I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: LifeOnHold on August 19, 2005, 07:14:29 PM
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What's the most ignorant thing someone has said to you regarding dialysis?
My 'winner' was: "Boy, I wish someone would make ME sit in a recliner for four hours!"
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What's the most ignorant thing someone has said to you regarding dialysis?
My 'winner' was: "Boy, I wish someone would make ME sit in a recliner for four hours!"
As you know I am in a wheelchair, and what really pisses me off is when someone says:
"Woah I got to get me one of those"
Yet they are perfectly healthy and walking. Or I also hate it when someone says:
"Boy that looks like fun"
Talking about how I speed past them.
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I have a co-worker who was trying to lose weight and told "I'LL GIVE YOU ONE OF MY KIDNEYS, I do need to lose 15-20lbs that would take care of that problem." I wanted to say why don't you just quit eating so much crap and might end up losing more than 20lbs.
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I have a co-worker who was trying to lose weight and told "I'LL GIVE YOU ONE OF MY KIDNEYS, I do need to lose 15-20lbs that would take care of that problem." I wanted to say why don't you just quit eating so much crap and might end up losing more than 20lbs.
I have gotten to the point where nothing people say will shock or surprise me, people are idiots plain and simple. If they just thought about what they were saying first. I mean really think about it, they might realize how ignorant they sound.
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Today a co-worker came in and closed the door to tell me that she was really thinking about me and hoped that I got better soon.
I laid it right out to her. "I'm not going to get better. This is it and most likely, since I'm still producing some urine, it will only get worse. Don't ask me how I feel or if I feel better because I don't. If you want to do something for me go learn what CKF is and what dialysis is. Then you won't sound so ignorant!" She then asked me... "well, what exactly is dialysis" I pointed to the door and told her to go look it up on the internet because they can explain it much better than I can and it exhausts me to try and explain it from the beginning." I don't liker her anyway~ :-X
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The newest dumb question: If you stopped dialysis would your kidneys fail? This is an educated adult woman!!! ;D
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Sounds like that woman needs brain dialysis! >:D
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Rerun,
I hope you had informed her the truth......Jamie-G
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When a co-worker saw the scars on my arm from the graft and then the fistula one day she asked me if I had tried to kill myself. I wanted to just say yes!
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I had the winner yesterday, I was talking with my sister and one of her friends and explaining I was tired because I took off 5 kilos on dialysis last night. Next question was how many pounds is that? I sad about 12lbs and her friend acutally said "How can I get on one of those machines that would be awsome to loose 12lbs in 3 1/2 hours". AMAZING!!!!!!!!!
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I had the winner yesterday, I was talking with my sister and one of her friends and explaining I was tired because I took off 5 kilos on dialysis last night. Next question was how many pounds is that? I sad about 12lbs and her friend acutally said "How can I get on one of those machines that would be awsome to loose 12lbs in 3 1/2 hours". AMAZING!!!!!!!!!
And cutting her head off would be an even QUICKER way for her to lose 12 pounds! >:D
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When I first started this crap in September I was on Weight Watchers at work. After my first dialysis I lost like 6 pounds. The instructor went nuts and I got a STAR and a BOOKMARK. I didn't say anything and just took the applause! ;D 8)
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Ignorant things people say #354:
"When I feel down and depressed... I just think of you and all you have to go through......."
Great! When things are shit in your life just think of me!!! And when I'm down and depressed, I just think of Terri Shivo! Cheers me right up! :P
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OK, I know that people praying for you is supposed to be a good thing... but to hear "The ladies in my _______ club are all praying for you" is like saying, "Hey! Your life is such a nightmare, we're all praying to our favorite religious figure that you have the strength to keep going, because WE sure couldn't imagine having to live like that!"
It's also weird to hear people claim they are praying for you, when previously the only prayers they said were that they didn't get caught doing whatever they were doing! As if they believe that if they change their behavior, God will somehow 'credit' your account! (They don't seem to realize that this totally negates what Jesus did on the cross-- but that's a whole 'nother subject!)
So I just say "Thank you!" and try to change the subject. Most of the people I talk to are quite surprised that I don't yak about how God is my life-line, I 'accept' dialysis as my cross to bear, blah blah blah... personally, I think that anyone who thinks God has decreed that they experience dialysis as some sort of penance really needs to examine their own religious beliefs and find out why they believe God is punishing them!
I mean, if you want to get technical, being on Earth at ALL, even in a healthy body, is punishment, because we're not in Heaven with God... and dialysis is a choice, not something that automatically happens to you when you get kidney failure. You make the choice to live every day that you park your ass in the dialysis chair-- if God was really 'punishing' you, people would come to your house and DRAG you to your treatments!
If there's any 'punishment' going on, it's dialysis patients having to listen to the same stupid questions over and over again despite having already explained this stuff a million times to people who purport to care!
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When I went back on dialysis a doctor said, You may have to wait six months to a year for a transplant? If only he knew what he had said. 17 years and still counting.
Kevno
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I have freckles on my face. I have always hated them and everyone said I would grow out of them I'm 44 and they are still there.
Today in the waiting room at the Dr. office this lady (who couldn't speak English very well) asked me "if the spots on my face were from kidney failure."
I said "yes these are liver spots and you will get them with kidney failure." She said "oh" and put her hands to her face as if to try and feel if they were there yet. >:D
Also, her little boys were running all over and trying to break the Venetian blinds on the windows. I yelled at them and told them to "GO SIT DOWN RIGHT NOW AND BE QUIET." They did.
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Rerun, you are not getting grumpy in your Old Age! ;D
Kevno
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How about
"Did you know so and so's brother passed away from a heart attack one night after he came home from dialysis."
Three people at work felt they had to tell me this information. Why did I need to know that?
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Go ahead....Ask me one more time....
Are you on the transplant list yet????
Katherine
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That is the MAIN reason I got on the list! To shut people up! Well, now they ask "How long have you been on the list?" AND "How long do people have to wait?" AHHHHHHHHHHHHHHh :P
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Tell me about it :o :o :o I get asked by the same people every year "are you on the list?" good job I know them :-\ :-\ Even by the Doctors >:( >:(
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I entered a meeting with all the salespeople and they made a comment as to how tan I was.
It was the middle of winter and I don't go to tanning salons, but my Vitamin D injections darken my skin from time to time.
"I wish I could get a free tan, you look great."
Morons.
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Some people do say some stupid things, but you have to realise that most people havent even heard of dialysis. When I met my now fiance he hadnt heard of it, neither had his family. They have all asked some stupid questions, its understandable.
I too am a bit sick of being asked if Im on the list, I know they mean well, but having to explain things 500 times is annoying. Im not on the list because as soon as I lose some weight, mums giving me a kidney. I have to explain this each time argh!
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My neighbor was on me about having a drink on Saturday night. I said "I'm on fluid restriction." She said "I thought people with kidney problems were supposed to drink lots of water." :o
Well.......that would be if you HAD working kidneys~ !! >:D
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My neighbor was on me about having a drink on Saturday night. I said "I'm on fluid restriction." She said "I thought people with kidney problems were supposed to drink lots of water." :o
Well.......that would be if you HAD working kidneys~ !! >:D
GOD I hate ignorant people. I hate it when people tell me to eat alot of vegetables to help clean my system out. >:( ::)
Also I have heard that too, you should drink lots of water. >:( ::) What I REALLY FREAKING HATE is when I tell people my bones won't heal and they tell me to drink lots of milk. >:( >:( >:( >:( >:( >:(
- Epoman
Damn now you guys (members) got me all upset. >:(
;D
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"soak your feet in a combination of water and mustard powder, the water will turn black but apparently its great for clearing out toxins from your blood" ??? ???.
try herbs like parsley and corriander, great for removing toxins!!!
well, anyway, I hope you get better soon, I hope you get well soon.
So how long will you have to do this dialysis thing ?.
some of the strange things :-[
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My Mother in law makes me want to scream....
She only lives 20 mins away... my Father in law works with my husband nearly everyday..
EVERY time I see her she asks... "Do you still have to go to the clinic?" Didn't you get a kidney yet?? " Ummm .. I think you would have heard about it if I did .. dumbass.... ??? :o
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mine was a nurse telling me if I hadn''t emptied my bladder this ultrasound wasnt going to work I told her I hadn't and she got quite upset . then I told her I hadnt emptied it in 3 years
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My Mother in law makes me want to scream....
She only lives 20 mins away... my Father in law works with my husband nearly everyday..
EVERY time I see her she asks... "Do you still have to go to the clinic?" Didn't you get a kidney yet?? " Ummm .. I think you would have heard about it if I did .. dumbass.... ??? :o
GOD, I hate clueless people like that. You should have told her no, can I have BOTH of yours. >:D
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It is amazing how many people think that my problem could be solved by 'drinking lots of water'!!! That is a piece of advice I get almost daily from people who are not close to me. [ The ones that are close to me are always monitoring how much I drink and reminding me of my limits.]
It is as if I always have to teach Kidneys and Dialysis 101 over and over again. - "Yes, drinking lots of water is good for people with functioning kidneys. With kidney failure, it just means more that has to be taken off at dialysis, resulting in blood pressure drops, etc."
Everyone is an expert!!
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My beef is with my close friends they always ask how I'm feeling but have never made an attempt to look into what dialysis is or even signed a donor card... needless to say I count my friends now by who came to see me in the hospital when I was there for months on end.
oh another one is the holier than thou crew who see my bulging fistula with the obvious needle marks and assume that I'm a heroin addict... I've had enough of the disapproving stares but I will never stop wearing T-Shirts.
I never mind telling people what dialysis / Kidney failure is... the more people that know such things exist the more people who will sign donor cards... I just don't understand why a person would refuse to sign... gawd knows most of us could use the points with the big guy upstairs.
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About a year before I started dialysis, a cousin of mine convinced me to go for "therapy" where the therapist placed warm compresses (soaked in various herbs, etc.) on my back, over my kidneys. I was told that the therapy would expand the filters in the kidneys, and unclog them, causing all the toxins to come out in the urine.
Sounded good to me! :o
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It is amazing how many people think that my problem could be solved by 'drinking lots of water'!!! That is a piece of advice I get almost daily from people who are not close to me. [ The ones that are close to me are always monitoring how much I drink and reminding me of my limits.]
It is as if I always have to teach Kidneys and Dialysis 101 over and over again. - "Yes, drinking lots of water is good for people with functioning kidneys. With kidney failure, it just means more that has to be taken off at dialysis, resulting in blood pressure drops, etc."
Everyone is an expert!!
Gah the thing about drinking lots of water always ticked me off so hard.
I knew this guy who used to tell me over and over " if only you had drunk more water you wouldn't have had your problems ... but don't give up it's never too late! You still need to drink tons of water ".
When he found I got my transplant he had the nerve to tell me the same speech " I still think you should have drunk more water " ..... violence came over me and I wanted to smash him in the mouth ( but this was over the internet so no harm done ;D )
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I am not a big drinker but when I go out with friends to have a drink an acquaintance will ask me, "Won't your kidney's get worse? Haven't your ruin your kidney's enough with alcohol? (as they finish their sixth drink) and I reply... "no that's your LIVER" yikes.
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Here, Here!!!
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WOW!
I can't believe I have never seen this thread before!
I have had sooooo many ignorant people tell me things that they think they have the 'right answer' and that I need their input!
Not to say anything against these people as some of them are my friends .. but it is nice to have a place to vent when you get this repeatedly and just want to tell them to shut up :-[
One of my friends told me repeatedly (and I had to work with him for a few years so that made it worse!!) to eat vegetables and eat whole wheat instead of all the "junk" he saw me eating. The "junk" was tuna on white bread and iced tea. He would tell me to drink juice and tell me to tell the doctors that I don't need dialysis because I should have all herbal supplements that would get my failed transplanted kidney to work again!
I even tried to explain to him how dialysis worked (I was on PD so that made it harder to explain to him)!! He was a University student taking Biology so of course I thought he was smart enough to grasp the simple concept .. but when I showed him a diagram of the Peritoneum .. he said, "I got a better pic!" and flipped the page to the page with a kidney cross cut...
Ever have one of those days when you think, "Even my little niece would be able to grasp this concept and YOU CAN'T!?!?!?"
Another was one of my cab drivers when I had Pneumonia and had a hard time breathing. He kept saying, "What you need is a large glass of water!!" .. this is a guy who knew I was going for dialysis 3 times a week every week ... ::)
I am not a big drinker but when I go out with friends to have a drink an acquaintance will ask me, "Won't your kidney's get worse? Haven't your ruin your kidney's enough with alcohol? (as they finish their sixth drink) and I reply... "no that's your LIVER" yikes.
I've heard that one as well! Also one of my friends said, "When you start dialysis you will be able to drink all you want right??"
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I was at clinic yesterday, and the nurses were even asking me if I was on the tranplant list... I was very pollite and told them that as far as I knew, I was.. but in my mind I was thinking.. geez, shouldn't you know this?
When I first started dialysis, I was 12 years old.. I was in the hospital for 2 months, and was actually the first child to go home on dialysis in the province.. anyway.. when I did get out of the hospital and went back to school, a lot of the kids were asking me if in order to come back I needed to have a transplant... how were they supposed to know? they were the same as me... what bugged me was that my mom left my Living with Kidney Disease book with my teachers, so they could get a grasp of what was going on... the only teacher who took an interest was the one teacher I couldn't stand....after she gave the lesson, and we were all working on whatever it was she gave us to do, she would walk around the room with that book... and every once in a while she'd stop and ask me a question on it... now, I was just leanring this stuff myself, I mean, I didn't have years to get used to the idea of kidney failure.. it happened pretty quick for me... so I usually didn't have an answer... so I just gave her my best guess, or a bunch of bs so she would go away....
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I hate it when I wanna get the time on dialysis to go fast and I sleep then 20 minute's later a stupid doc comes in shakes me awake and asks how are you today and then goes away. Then I usually can't sleep anymore :(
What I also hate is when I'm at a party and wanna have fun and talk about other things the only thing people seem to talk to me about is dialysis.
ARGH
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I got one for you all. How about the training people, docs and nurses who decide to come in and see YOU because you are the interesting patient today? I have had more damn trainees stop in to see me because I have a urostomy and have kidney failure than you could shake a stick at. Can I see? Is what they ask. Oh sure why the hell not, everyone and their damn brather has been in here already!
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I got one for you,
cos I`m young and relatively healthy, and only just started dialysis, 2 months now. I saw my consultant last night who popped his head through the door to ask if I was back to work full - time. I told him I was and he said to me "you`ve done me proud!"! I`m sorry, I`ve done YOU proud??? What am I, some kind of lab experiment or something!!!
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I got one for you,
cos I`m young and relatively healthy, and only just started dialysis, 2 months now. I saw my consultant last night who popped his head through the door to ask if I was back to work full - time. I told him I was and he said to me "you`ve done me proud!"! I`m sorry, I`ve done YOU proud??? What am I, some kind of lab experiment or something!!!
If we don't do it, they certainly won't! ;)
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The most common comment I heard from people when I first started dialysis was, "You have to go three times a week for five hours each time?! That's horrible! How long does that go on for?" After a few years on dialysis, the most typical question I got was, "If dialysis is so much trouble for you, why don't you get a transplant instead?" These are the sorts of people on whom we have to rely for sane and humane public policy with respect to the medical care of renal patients, and from whom we have to hope we will someday get a transplant. "I'm not going to sign my kidney donor card," many people will tell you, "because those kidney patients got sick because they didn't take good care of their heath, the way I do!"
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I love it when ignorant people tell me "drink more water, it will help clean your blood" >:( ::)
Or "have you tried eating more vegatables?" >:( ::)
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On explainng to someone (for the millionth time) why my son had to go on dialysis, I was asked
"Oh. What do the kidneys do?" followed by the next question "Where are they anyway?" ::)
It never ceases to amaze me how ignorant some people are of their bodies and how they work.
Perhaps the one thing that really angered me was a couple of years ago my son applied for a job. He was front runner to get the job as no-one else had applied. He really wanted that job. At the last moment another young lad was sent for interview. The other lad got the job. He wasn't on dialysis you see. I felt so sorry for Ian as he'd really pinned his hopes on getting that job and had all but been promised it. He looked so dejected and there was nothing I could do or say to make him feel any better. The irony was, it was as a trainee phlebotomist in our local hospital >:(
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I still get "are you still going to dialysis"? I just stare at them and try not to grab their nose and twist it as I say "YESsssss I am"!!
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What's wrong with just saying "Yes. You still breathing?" ,ReRun ;D
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Oh Ignorance is bliss, isn't it? I swear people think you can run down to Kmart or Walmart or your nearest hospital and just jump onto the transplant list. "Aren't you on the list yet?" If I hear it one more time.....
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If a doctor is proud of you I wouldnt complain.
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If a doctor is proud of you I wouldnt complain.
Did I miss something? ???
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Some one said to me, "You look like you have one foot in the grave."
20 years later, he's dead and I'm still quite alive! >:D
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I try to have compassion because I'm sure I've said some really dumb but well meaning things in my time, too. Probably still do, if not about dialysis.
I do get tired of the transplant question about my son...I have to admit. People don't understand that transplant is not a "cure"...
Mom 3
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Tell that to some of the members here >:D.
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Reading this kinda lifts my spirits a bit...
You see, my friends are good friends (although one can be... sticky fingered at times) and they understand my dialysis better then most Adults do! the sheer ignorance I had to suffer from my Teachers while I was at school... well lets say i was glad that kids and teenagers are usually self-centred (in other words, they don't give a flying monkey, as long as i could still play cricket/football/whatever) on the plus side, I have MY name put onto the big achievements board in the assembly hall (funny enough its listed under "Fortitude in Adversity" ... all I did was get on with it and my life...) from now till the school gets knocked down >:D >:D (and on another note... the school nurse...*shudder* god... ignorance of the highest order there, and missing a couple hundred brain cells to boot!)
anyway, my friends usually come round and keep me company while I'm on dialysis (sometimes till its gone 4 in the morning!) and they understand how and why my dialysis works, how the transplant list works etc. and it helps a lot. And we usually have a blast playing our computers and such together and that ;D.
- Shades
P.S does anyone else here have an aversion to alcoholic drinks? I can't stand them, although i will try and enjoy some wine at Christmas and such (but never more then half a glass)
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Reading this kinda lifts my spirits a bit...
You see, my friends are good friends (although one can be... sticky fingered at times) and they understand my dialysis better then most Adults do! the sheer ignorance I had to suffer from my Teachers while I was at school... well lets say i was glad that kids and teenagers are usually self-centred (in other words, they don't give a flying monkey, as long as i could still play cricket/football/whatever) on the plus side, I have MY name put onto the big achievements board in the assembly hall (funny enough its listed under "Fortitude in Adversity" ... all I did was get on with it and my life...) from now till the school gets knocked down >:D >:D (and on another note... the school nurse...*shudder* god... ignorance of the highest order there, and missing a couple hundred brain cells to boot!)
anyway, my friends usually come round and keep me company while I'm on dialysis (sometimes till its gone 4 in the morning!) and they understand how and why my dialysis works, how the transplant list works etc. and it helps a lot. And we usually have a blast playing our computers and such together and that ;D.
- Shades
P.S does anyone else here have an aversion to alcoholic drinks? I can't stand them, although i will try and enjoy some wine at Christmas and such (but never more then half a glass)
Shades_Elfen, youve reminded me of something that happened to me at school. I was on PD for 9 months while in yr9 and during that time I either didnt go to school, or I went, and ended up going home halfway through the day. My report card for that year was pretty much blank, and most of the comments said "too difficult to grade". Then at the end of that year I got a transplant, and continued onto yr10 the next year without repeating. As a result of the transplant, I was attending school normally and my grades came back to normal. Because of that I was in the running for the "most improved in y10" in which you got a scholarship to attend a learning seminar thing at one of the top universities here. I didnt think I would get it, but I did, and I was pretty proud. I felt sort of bad about it though as the only reason why my grades came back up was because I was actually well enough to attend school. I dont think I really spoke to my friends much about dialysis or what I was going through, except for when I was going in for surgery I told them. A couple of them were more fasinated in seeing my catheter, which I really felt uncomfortable with.
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Shades_Elfen, youve reminded me of something that happened to me at school. I was on PD for 9 months while in yr9 and during that time I either didnt go to school, or I went, and ended up going home halfway through the day. My report card for that year was pretty much blank, and most of the comments said "too difficult to grade". Then at the end of that year I got a transplant, and continued onto yr10 the next year without repeating. As a result of the transplant, I was attending school normally and my grades came back to normal. Because of that I was in the running for the "most improved in y10" in which you got a scholarship to attend a learning seminar thing at one of the top universities here. I didnt think I would get it, but I did, and I was pretty proud. I felt sort of bad about it though as the only reason why my grades came back up was because I was actually well enough to attend school. I dont think I really spoke to my friends much about dialysis or what I was going through, except for when I was going in for surgery I told them. A couple of them were more fasinated in seeing my catheter, which I really felt uncomfortable with.
I can relate to you there, there were days when i just wanted nothing more then to curl up and stay in bed all day (and i still get like that sometimes) and the bit about people wanting to see your catheter, THAT i can definitely relate to...
I wonder what went through my teachers minds when they saw "Ghost" come in... (Ghost is a nickname i had in school, because of how pale I was)
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Hi Shades,
before I was diagnosed with Alports, I used to drink like a fish! Now though, I don`t really like the taste of alchohol at all. Not only do I not want to use up my fluid allowance (2ltrs a day) by drinking booze but for some reason, I`ve gone right off the taste of it altogether.
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I can think of only one time I've been rat-@ssed - at a wedding... I got into a fight with a tree.... I think it was a draw... it lost a branch, I got a scar on my forehead (that is almost impossible to see it now)
as expected, I haven't gotten drunk again... mainly because I can't stand the taste of alcohol...
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I do not like the taste of alcohol either (but i sure do love the effect) ::) Every now and then i do indulge in a Margarita or 2 or 3 or 5, lol, but not as much as i used to. I used to slam shots of tequila like it was nobody's business and chase it down with a nice cold Budlight, ahhhhh, the good ol' days, now i just take shots now and then to relax (their only 2 oz.) and then only a couple of swallows of beer, not that bad eh? lol, i know it's not good either but hey, i am going to party til i cant party no more (just in moderation) ;)
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When I was in Grade 10 I hardly was in school as all as I had to go on PD and the teacher wouldn't let me do it at school unless I agreed to do it in an old locker room where it had one of those doors with a vent in it made of wood that was broken. Back in 1990 when you had to do PD in a sterile environment I had to turn that room down so I was forced to do it at home. My mom was mad at the principal who tried to have me do it in the locker room because the principals exact words were, "Accept that locker room or go home! Those are your choices!" She made me feel like I was unappreciative if I didn't accept it when I was only trying to do what was best for me without getting Peritonitis!
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"You mean you can't pee ... where does it go?" :o
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"You mean you can't pee ... where does it go?" :o
lol ya I have been asked that too ;)
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I can think of only one time I've been rat-@ssed - at a wedding... I got into a fight with a tree.... I think it was a draw... it lost a branch, I got a scar on my forehead (that is almost impossible to see it now)
as expected, I haven't gotten drunk again... mainly because I can't stand the taste of alcohol...
What Shades hasn't told you - he wasn't quite 14 at the time >:D It was my friend's eldest daughter's wedding and he disappeared into the crowd with her youngest daughter who's the same age. Our bold hero was only helping himself to people's drinks when they were up dancing and trying to impress the girls. Nothing like learning the hard way >:D
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Its seems to me that people don't really care how there body works, which is strange, and nobody wants to know. when I first got sick I didn't know what kidneys done really, I didn't know I had something called a peritoneum, or how red blood cells are created. I mean people have more important things to think of than how it all works, many of those people who ask stupid questions don't know simply because they have no need to know, allthough I like to think that if I had a friend with a medical problem I would learn something about it so that I would know what they were going through, it ticks me off when people don't seem to care, blissfully ignorant.
Heph
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Funny you said that heph because I was like that to before I met Angie. I didn't know jack about kidneys and what they do and what people do when their kidneys failed. As you so well put it, I didn't have a need to know because I myself, don't have that problem and I didn't know anyone anyone suffering from perminate kidney failure. Obviously, I don't get out to often. :-X
But was it blissful ignorance not knowing? Depends on how you look at it.
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Well as long as people are willing to explain to the ones who don't. I don't mind explaining .. just some of the determined people who have it in their heads that they know more than me even though I have been going through this for over 20 years now ... they are the ones who get to me :P
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I am always ready, willing and able to listen. It's just that it's very hard to find someone knowledgeable, willing to explain things to me that I do not understand in the best way they can. I know that there are plenty of situations out there where the "best" way to fully understand something is to experience it for yourself but, it is not the "only" way to learn. Which is why I try to seek answers from experienced personnel. ;)
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When I get dumb questions my questions start..I figure if their dumb enough to ask such questions they may just give up their kidney up so I ask for theirs. LOL..They usually change the subject, which is fine with me. >:D because if they can't intellegently discuss it then move on. I find that most are aftraid your are going to ask them for a donation anyway. so they avoid the conversation.Or run time they discover you are in kidney failure. But the stares. :o..kinda like they are expecting you to do something strange right there in front of them..Now we know we all wait till we're alone for that! ??? :-\ >:DSassy
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" that's like the best hangover cure ever!"
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"You mean you can't pee ... where does it go?" :o
lol ya I have been asked that too ;)
" so when you wake up you don't need to go to the bog straight away?..cool! >:(
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"Really? Your kidneys have failed? You don't look sick."
It's called "make-up," idiot. How bad am I supposed to look?
Then there was the ditzy doc who piped up at my first appointment with "We should be able to get you a kidney right away!" What? Have you even heard of the waiting list? I was still at about 30% function at the time - there was no need to even be thinking about transplants and dialysis yet. (That doc didn't last long with me!)
( I know this is an old post, but I've been reading all the older ones, trying to see if I've missed any helpful info. This one just struck me as absolutely hilarious!)
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"Really? Your kidneys have failed? You don't look sick."
It's called "make-up," idiot. How bad am I supposed to look?
Then there was the ditzy doc who piped up at my first appointment with "We should be able to get you a kidney right away!" What? Have you even heard of the waiting list? I was still at about 30% function at the time - there was no need to even be thinking about transplants and dialysis yet. (That doc didn't last long with me!)
( I know this is an old post, but I've been reading all the older ones, trying to see if I've missed any helpful info. This one just struck me as absolutely hilarious!)
Jbeany, that is why Epoman keeps the old posts here, for all the newcomers to see... Please dont ever hesitate to post in any "old threads" :2thumbsup;
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How about the nurse who walked into my room and when I asked if I could have a cup of tea, turns to me and says you can have tea? I told her a little cup of tea would not kill me off. She had to get an okay, but brought me a hot cup of tea to soothe my sore throat. I love nurses.
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Ok, just read throu this whole post. Quite interesting.... :D
One thing that makes me want to smack ppl into last week. When I tell someone about the weight loss and they say "cool, wish I could lose weight that way". I'm just thinking ur F'ing Nuts. How could someone say something SO stupid? ? ?
Now this person is very close to me and it really upsets me that she says this to me often. If I'm having an off day, tired, feeling sick, feet hurt from working, aching back...etc, etc.....she tells me..... get over it GET OVER IT! ! !, WTF...how can you tell someone to "get over it" gheesh....
Oh, here is a favorite.....Can't believe a friend asked this. I told him I haven't peed in 5 yrs.
He asked....Do you still have a penis? ? Duh....it shriveled up and fell off! ! ! What the heck do u think ! !! If he wasn't twice my size I would of smacked him. >:D
I don't mind ppl asking me questions. It's just the ones that ask idiotic questions and the ppl that ask the same questions over and over again.
I almost foregot. A couple months ago I ran into an old friend at a night club. He hadn't seen me since the osteoporosis. When he saw that my back was curved, he told me to do yoga. He said his back started to curve (yea, ok whatever) and he did yoga. Presto, his back was straight again. I told him I had osteoporosis and the vertebrae had collapsed and fused together and nothing could be done. He just kept saying yoga would fix it. *sigh* some people......
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My favorite lately is from people wo have no idea what dialysis does to your fluid restrictions.
"Oh I thought if your kidneys were bad drinking more water would help"
"Oh you should take diuretics. You won't gain so much water weight. " Now where is that water going to go when my cells no longer have it in them and it is in my bloodstream?
Oe when you order a glass of ice in a restaurant and they bring you half a glass of ice, or the fast food restaurants who just do not understand how to fill, really fill a cup with ice, then fill it with drink.
"But you are not getting much soda." One says to me. I said "That is the idea. I can have the taste but not the liquid this way.
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When he saw that my back was curved, he told me to do yoga. He said his back started to curve (yea, ok whatever) and he did yoga. Presto, his back was straight again. I told him I had osteoporosis and the vertebrae had collapsed and fused together and nothing could be done. He just kept saying yoga would fix it. *sigh* some people......
Ya I know what you mean! I have a friend that told me if I took herbal supplements that my kidney would start working again ..
I mean .. it is not the fact so much that people seem to not think logically but that even when you explain to them that they still keep going on with the first thing they were saying. Nothing you say can prove to them their mistake in how they see it. Like that guy who kept on with yoga my friend kept on with herbal supplements.
And ...
My favorite lately is from people wo have no idea what dialysis does to your fluid restrictions.
"Oh I thought if your kidneys were bad drinking more water would help"
"Oh you should take diuretics. You won't gain so much water weight. " Now where is that water going to go when my cells no longer have it in them and it is in my bloodstream?
Or when you order a glass of ice in a restaurant and they bring you half a glass of ice, or the fast food restaurants who just do not understand how to fill, really fill a cup with ice, then fill it with drink.
"But you are not getting much soda." One says to me. I said "That is the idea. I can have the taste but not the liquid this way.
Ya my cab driver insisted that all I needed was water when I couldn't breathe because of fluid overload when they changed me from PD to HD and didn't know yet my dry weight because of all the weight loss I had when I got Peritonitis. I went home only to have to come back to the hospital (it turns out I had a 2nd bout of Pneumonia at that time) and the cab kept saying, "I can get you a glass of water. That is what you need is just some water" grrr...
And when I was at A&W and I asked for a child size drink and while waiting for my order the girl says, "want me to top it up since you've been waiting?" Well that was nice and all but the whole reason I ASKED for a CHILD size was to not have a lot. I find myself having to explain WHY a lot :(
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Sometimes I just let the weird looks go on by me when I order the ice cup or something unusual. Why bother to explain to someone who does not give a rat's ass about me anyway!
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Sometimes I just let the weird looks go on by me when I order the ice cup or something unusual. Why bother to explain to someone who does not give a rat's ass about me anyway!
I think it's easier to let it go than to explain. When I first started my low everything diet, my girlfriend felt she needed to explain once why we were being so picky at a fancy shmancy restaurant. The waiter had this blank look on his face, not only did he not give a crap. he was at a loss as to what to say. I felt sorry for him.
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I hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.
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I hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.
Yeah, I dislike that to. They never ask if you want a refill or not. Does anyone ever think that maybe I was DONE drinking that water???
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I hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.
Yeah, I dislike that to. They never ask if you want a refill or not. Does anyone ever think that maybe I was DONE drinking that water???
Well they figure that if you don't want to finish it that you will just leave the rest since water is free.
But they don't realize SOME of us may be MEASURING!
Sometimes it is just easier to call in advance, say that you are coming in and have a special diet and measure your drinks. Then they realize and remember .. usually that is.... :banghead;
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I hate it when I'm at a restaurant and I have water......they keep toping it off and then I lose track of how much I've had. I try to move my water glass WAY out of the way and she still seems to find it.
Yeah, I dislike that to. They never ask if you want a refill or not. Does anyone ever think that maybe I was DONE drinking that water???
Well they figure that if you don't want to finish it that you will just leave the rest since water is free.
But they don't realize SOME of us may be MEASURING!
Sometimes it is just easier to call in advance, say that you are coming in and have a special diet and measure your drinks. Then they realize and remember .. usually that is.... :banghead;
Want a solution? To stop waiters from filling up your cup/glass without asking, just place a napkin on top of your glass. :thumbup;
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Ohhh, that's a GREAT idea Epoman, :thx;
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I was drinking iced tea one day and had a fit when the waiter went to top it off. I said "I have the right amount of tea, to ice, to sweetener, please do NOT screw it up." He never came back again! LOL
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This might not be ignorant, as I think the people who ask do care, but I hate when I get the "How are you doing?" and I say "fine" (because since I started dialysis, much as I hate it, I do feel so much better) then they look at me and say "No - how are you REALLY?" Are they hoping I feel like crap? Would they really want to listen to my complaints anyway?
Here's another one...a woman at my church is really into this "raw foods" diet. She came up to me a few weeks ago and said "Well, are you ready to try a new diet while you are waiting for your transplant to be rescheduled?" I told her I was on a renal diet, and that I have a dietitian that I see regularly. Wouldn't you think that is all that I needed to say? Nope - she seemed to think she had the right diet for me. I tried to explain some of the basics of the renal diet, but she just kept looking at me like she knew better. Finally I told her that my diet was restricted enough and I didn't really need to add a second diet and restrict it even more. I know she was trying to help, but people don't realize there is not a magic anything to make this disease go away - ever.
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Here's another one...a woman at my church is really into this "raw foods" diet. She came up to me a few weeks ago and said "Well, are you ready to try a new diet while you are waiting for your transplant to be rescheduled?" I told her I was on a renal diet, and that I have a dietitian that I see regularly. Wouldn't you think that is all that I needed to say? Nope - she seemed to think she had the right diet for me. I tried to explain some of the basics of the renal diet, but she just kept looking at me like she knew better. Finally I told her that my diet was restricted enough and I didn't really need to add a second diet and restrict it even more. I know she was trying to help, but people don't realize there is not a magic anything to make this disease go away - ever.
I have someobne like that who tells me to eat whole wheat products, more vegetables and fruits, a lot of water and no meat. No matter how hard I try to tell them I HAVE to eat this way they just don't get it. She actually told me once I don't drink half as much as I should be drinking. I just smile at her and tell her I will take her advice under consideration, basically yes her to death.
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Of course, we all have the friend who 'knows somebody' who treats all manners of diseases with herbs. I explained just last week that I have End Stage Renal Failure, there ain't no going back! All I got was a blank look and the insistance that this person has done wonders with people with all kinds of ailments (but he didn't include non-functioning kidneys!).
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One of the people I used to work with was one of those "Herbs cure everything" people. She insisted that if I ate a cinnamon stick every day, my diabetes would go away. Now I realize there are a few studies that say cinnamon helps the body effectively use insulin, but hello, I've got juvenile. I don't make ANY insulin, so all the cinnamon in the world is not going to kick start my pancreas.
Besides, straight cinnamon? How much tree bark can anyone eat in a day? Ewwwwww :P
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I can think of only one time I've been rat-@ssed - at a wedding... I got into a fight with a tree.... I think it was a draw... it lost a branch, I got a scar on my forehead (that is almost impossible to see it now)
as expected, I haven't gotten drunk again... mainly because I can't stand the taste of alcohol...
I am laughing so hard that my sides hurt! That is just too damn funny....
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It annoyed me when my friend tried to tell me of ways to make my transplanted kidney work again when it now has 0% function (well less than 5% anyway) and the body doesn't accept it .. he doesn't seem to realize that a transplanted kidney is not like an original kidney that the body won't fight off ...
.. another thing that annoys me is no matter how many millions of times .. this is how every meal goes:
"oh look at the desserts! Oh YOU can't have them because they have sugar."
Excuse me? I think I know my diet better than YOU person who doesn't even know what a kidney is for! Geeze! :banghead; I can understand a person not knowing .. but TELLING me I can't have something that I can? It is bad enough the people who tell me to drink more water and that I should eat "healthier" but to tell me I can't have the one thing I can have?? I am not diabetic! It is bad enough I can't have everything else :P
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I got a call from work (where I use to work) inviting me to the Christmas party. I asked what day and they said Dec. 14 which is a Thursday......um I have dialyzed on T, Th, Sa for a fricking year...... Then they said well maybe you could come to Sandra's retirement party which is November 14.....a Tuesday......um no I dialyze on Tuesday......Then they say "well if they change your day or time let us know." Like I was the problem.
Then they asked me to send them the Christmas story I wrote 2 years ago because they wanted to read that again at this year's party. Sure........no problem.
That is so hurtful to me that nobody can remember that I have dialysis on Tuesday, Thursday and Saturday!
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A supposedly good friend demonstrated recently how little he had listened to what I had told him in the past about kidney disease. I always make sure I don't bore friends to death with too many details and I've only discussed it with him (his name is Ray) when he has broached the subject. I have known this guy for 25 years and for 18 of those years I have been diagnosed with kidney disease and just recently have gone onto dialysis so I assumed that from our occasional conversation on the subject,he was aware of at least the basics. A recent conversation with Ray went like this
Ray< Ken, I saw a piece in my local newspaper to day that may be of interest to you, I'll cut it out and send it.
Me< What would that be then Ray?>
Ray< Well, a recent study into a drug used for the treatment of obesity has been found to hold properties effective in treating.........
....Wait for it DIABETES!!!
Me < And why would that be of interest to me Ray?>
Ray<Well.......erm....er Isn't that what you have?
Me < I have kidney failure>
Ray< Isn't that the same thing?>
I rest my case
Fixed Bold - Rerun Moderator
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
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Because truly serious disease is rare in the human population, particularly since we have been evolving for the last million years in such a way as to weed susceptibility to these problems out of the gene pool, most people simply assume everyone conforms to the same paradigm they do, which is: 1. Get sick; 2. Go to the doctor/hospital; 3. Get treated and become healthy once again; 4. Return home. They cannot understand how it is possible that someone can have been to the doctor or stayed in the hospital and not come home well. "Congratulations! You're out of the hospital now. You must be feeling a lot better!" Or, coversely, they assume that if you are not well, it is because you haven't done what every sensible person should do, and that is go to the doctor or the hospital to be treated and get well. The final possibility is that they assume if you are not well after having been to the doctor it must be because you are not taking your medicine or following the instructions. And I'm sure we have all heard this one: "Why don't you just get a transplant if dialysis is taking up so much of your time?"
The frightening thing is that the general public, people with this degree of misunderstanding about serious illness, are ultimately the one's who, through their representatives in the legislature, determine health care policy, deciding whether there should be public healthcare or private insurance, whether the existing transplant laws are adequate, how much money should be spent by the government on medical research, how much money the public purse should devote to dialysis care, etc. What is the legitimacy of a democracy if the majority understands our problems about as well as goldfish understand a bicycle race?
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I got a call from work (where I use to work) inviting me to the Christmas party. I asked what day and they said Dec. 14 which is a Thursday......um I have dialyzed on T, Th, Sa for a fricking year...... Then they said well maybe you could come to Sandra's retirement party which is November 14.....a Tuesday......um no I dialyze on Tuesday......Then they say "well if they change your day or time let us know." Like I was the problem.
Then they asked me to send them the Christmas story I wrote 2 years ago because they wanted to read that again at this year's party. Sure........no problem.
That is so hurtful to me that nobody can remember that I have dialysis on Tuesday, Thursday and Saturday!
Oh I feel for you Rerun! Like we can just change what day we do dialysis? Oh ya let's skip a day or move it a day. Like that will have NO effect on us!! ::) :banghead;
When there is a long weekend because of a Holiday on Friday or Monday (I dialysize on M/W/F) the cab driver always says, "Oh it is a long weekend so the dialysis unit isn't open right? Does this mean I take you on Tuesday instead??"
:banghead; :banghead; :banghead;
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Ya I had the same thing happen to me while i was in the hospital last year for 6 weeks!
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I got a call from work (where I use to work) inviting me to the Christmas party. I asked what day and they said Dec. 14 which is a Thursday......um I have dialyzed on T, Th, Sa for a fricking year...... Then they said well maybe you could come to Sandra's retirement party which is November 14.....a Tuesday......um no I dialyze on Tuesday......Then they say "well if they change your day or time let us know." Like I was the problem.
Then they asked me to send them the Christmas story I wrote 2 years ago because they wanted to read that again at this year's party. Sure........no problem.
That is so hurtful to me that nobody can remember that I have dialysis on Tuesday, Thursday and Saturday!
Oh I feel for you Rerun! Like we can just change what day we do dialysis? Oh ya let's skip a day or move it a day. Like that will have NO effect on us!! ::) :banghead;
When there is a long weekend because of a Holiday on Friday or Monday (I dialysize on M/W/F) the cab driver always says, "Oh it is a long weekend so the dialysis unit isn't open right? Does this mean I take you on Tuesday instead??"
:banghead; :banghead; :banghead;
Yeah only if you want to take me to the cemetary! :banghead;
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Because truly serious disease is rare in the human population, particularly since we have been evolving for the last million years in such a way as to weed susceptibility to these problems out of the gene pool, most people simply assume everyone conforms to the same paradigm they do, which is: 1. Get sick; 2. Go to the doctor/hospital; 3. Get treated and become healthy once again; 4. Return home. They cannot understand how it is possible that someone can have been to the doctor or stayed in the hospital and not come home well. "Congratulations! You're out of the hospital now. You must be feeling a lot better!" Or, coversely, they assume that if you are not well, it is because you haven't done what every sensible person should do, and that is go to the doctor or the hospital to be treated and get well. The final possibility is that they assume if you are not well after having been to the doctor it must be because you are not taking your medicine or following the instructions. And I'm sure we have all heard this one: "Why don't you just get a transplant if dialysis is taking up so much of your time?"
The frightening thing is that the general public, people with this degree of misunderstanding about serious illness, are ultimately the one's who, through their representatives in the legislature, determine health care policy, deciding whether there should be public healthcare or private insurance, whether the existing transplant laws are adequate, how much money should be spent by the government on medical research, how much money the public purse should devote to dialysis care, etc. What is the legitimacy of a democracy if the majority understands our problems about as well as goldfish understand a bicycle race?
Sad but true. I have a cousin who was in the military. He has the mentality that the people who are sick should get out of the way and make room for the people who in his words "can contribute to society" meaning those of us who are not well should just go off and die somewhere. I said to him karma is a bitch--one day you'll be all well and fine and BOOM you can get hit by a car and be disabled. He laughs at me. Smug little bastard......... >:D
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I have met people who do not even know WHERE their kidneys are in their bodies...
Uninformed comments do not surprise me at all... :banghead;
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I have met people who do not even know WHERE their kidneys are in their bodies...
Uninformed comments do not surprise me at all... :banghead;
So true! I have met so many people that don't know. Did I ever tell of the University student who had a biology book open so I decided to explain where the Peritoneal dialysis is done? There was a perfect picture of the Peritoneum and he says, "I got a better pic!" and flips the page to a pic of a kidney
::)
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I will confess to being ignorant (gasp!). :lol; Before all this with Joe, I did not know anything about dialysis, kidney failure, etc. I don't even remember knowing dialysis existed. It was just something I had never been exposed to or educated on.
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I will confess to being ignorant (gasp!). :lol; Before all this with Joe, I did not know anything about dialysis, kidney failure, etc. I don't even remember knowing dialysis existed. It was just something I had never been exposed to or educated on.
Well, I'm sure I say stupid things to liver patients or heart patients. Why would a normal healthy person know about kidney disease? But, once you are a patient you just get tired of the dumb questions......
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I will confess to being ignorant (gasp!). :lol; Before all this with Joe, I did not know anything about dialysis, kidney failure, etc. I don't even remember knowing dialysis existed. It was just something I had never been exposed to or educated on.
Same thing here Sara. I knew very little about kidney disease before I met Angie. Now it's like I have entered a completely different world. Rerun is right. Why would a normal, healthy person want to seek information about something that does not effect them?
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I will confess to being ignorant (gasp!). :lol; Before all this with Joe, I did not know anything about dialysis, kidney failure, etc. I don't even remember knowing dialysis existed. It was just something I had never been exposed to or educated on.
Well, I'm sure I say stupid things to liver patients or heart patients. Why would a normal healthy person know about kidney disease? But, once you are a patient you just get tired of the dumb questions......
exactly but it is more than that. I can handle questions as there are no "dumb" questions .. but it is the ones you explain to over and over again and don't get it that get to me. :banghead;
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It's not the questions that bother me. When someone wants to know about dialysis, or kidney failure, or how to navigate getting disability, I'm glad they asked. If they don't know anything, I'm glad to share what I do know. My problem is with the people who don't know anything about it but assume that they know all the answers and solutions - the ones who think cranberry juice and cinnamon sticks will solve all my problems. Those are the ignorant ones.
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I think that in most cases, most people don't really know the difference between acute and chronic kidney failure. That is what I have been noticing from my co-workers who start asking me questions about my girlfriend Angie.
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I get the "weight" joke quite a bit....I DO offer my machine to anyone who wants to do dialysis just for fun. The other one I get is "it's just a needle (2)...I donate blood and it's not a big deal....yeah right.
I have a GREAT sense of humor. I can take a joke...but don't tell me that"you should be thankfull that this technology is available now a days...otherwise you would be dead"....I can't take that :-\
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I get the "weight" joke quite a bit....I DO offer my machine to anyone who wants to do dialysis just for fun. The other one I get is "it's just a needle (2)...I donate blood and it's not a big deal....yeah right.
I have a GREAT sense of humor. I can take a joke...but don't tell me that"you should be thankfull that this technology is available now a days...otherwise you would be dead"....I can't take that :-\
How can they say "Its just a needle"??? The f&%&$ing needles are only one of the minor parts of being on dialysis!!! Do they give blood 3 times a week for 4-6hrs? And if they dont they will die? Pffft!!!
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It's not the questions that bother me. When someone wants to know about dialysis, or kidney failure, or how to navigate getting disability, I'm glad they asked. If they don't know anything, I'm glad to share what I do know. My problem is with the people who don't know anything about it but assume that they know all the answers and solutions - the ones who think cranberry juice and cinnamon sticks will solve all my problems. Those are the ignorant ones.
exactly!!
I get the "weight" joke quite a bit....I DO offer my machine to anyone who wants to do dialysis just for fun. The other one I get is "it's just a needle (2)...I donate blood and it's not a big deal....yeah right.
I have a GREAT sense of humor. I can take a joke...but don't tell me that"you should be thankfull that this technology is available now a days...otherwise you would be dead"....I can't take that :-\
How can they say "Its just a needle"??? The f&%&$ing needles are only one of the minor parts of being on dialysis!!! Do they give blood 3 times a week for 4-6hrs? And if they dont they will die? Pffft!!!
Ya and those needles are HUGE that we get cannulated with! :(
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This is an enlightening thread! I had no idea what some of you have to listen to.
- It's fun to be in a wheelchair?! :o
- The machine is a great way to lose weight?! :o Yes, and so is an amputation. But maybe they already had one - of their brain...
With the exception of those who ask such inexcusable questions, I think most people are truly interested and want to show their concern and support (at least I hope this is their motivation). Many people really don't know much about ESRD and dialysis and don't understand the difference between long-term treatment of a chronic condition v. eventual cure; also, maybe they want to believe that dialysis is a cure because if ESRD could happen to you - a coworker, acquaintance - it could also happen to them; and that's a thought too frightening for many to entertain.
I have to admit I have asked patients about the transplant list; I had no idea you're so sick hearing about it. Usually I would ask transient patients - to make conversation and show an interest - but sometimes even patients in our clinic (we averaged 76-78 pts, and unless you were assigned to a patient as the primary nurse the workload did not allow us to read many charts). I'll try to get that info from my patients' hospital charts in my upcoming job.
DeLana :grouphug;
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I had the winner yesterday, I was talking with my sister and one of her friends and explaining I was tired because I took off 5 kilos on dialysis last night. Next question was how many pounds is that? I sad about 12lbs and her friend acutally said "How can I get on one of those machines that would be awsome to loose 12lbs in 3 1/2 hours". AMAZING!!!!!!!!!
I actually remember my Mom and my sister joking during my training that they would love to use dialysis as a way to lose weight (although neither of them is overweight), and then the head nurse answered that if that were possible, he'd be rich!
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I have to admit I have asked patients about the transplant list; I had no idea you're so sick hearing about it. Usually I would ask transient patients - to make conversation and show an interest - but sometimes even patients in our clinic (we averaged 76-78 pts, and unless you were assigned to a patient as the primary nurse the workload did not allow us to read many charts). I'll try to get that info from my patients' hospital charts in my upcoming job.
DeLana :grouphug;
Don't stop communicating with your patients verbally. You can only read the cold hard facts in the charts, you can't begin to get to know the PERSON through a chart. I don't mind questions from people as long as they don't try to tell me how to cure myself with herbal teas and coffee enemas! (Yes... someone suggested that to me once)
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I think the difference is between people asking a stupid question just out of not knowing about ESRD and showing an interest and people who think they know how to make our lives better with. `drink more water' or something similar and when you explain why we do not do that they just do not listen or comprehend that more water would be harmful.
I do not mind people asking me stupid questions as long as they are prepared to listen to what I have to say.
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I think the difference is between people asking a stupid question just out of not knowing about ESRD and showing an interest and people who think they know how to make our lives better with. `drink more water' or something similar and when you explain why we do not do that they just do not listen or comprehend that more water would be harmful.
I do not mind people asking me stupid questions as long as they are prepared to listen to what I have to say.
Good point Alasdair!!! :2thumbsup;
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I have to admit I have asked patients about the transplant list; I had no idea you're so sick hearing about it. Usually I would ask transient patients - to make conversation and show an interest - but sometimes even patients in our clinic (we averaged 76-78 pts, and unless you were assigned to a patient as the primary nurse the workload did not allow us to read many charts). I'll try to get that info from my patients' hospital charts in my upcoming job.
DeLana :grouphug;
Don't stop communicating with your patients verbally. You can only read the cold hard facts in the charts, you can't begin to get to know the PERSON through a chart. I don't mind questions from people as long as they don't try to tell me how to cure myself with herbal teas and coffee enemas! (Yes... someone suggested that to me once)
Oh, I wouldn't. But I'm glad that working in the hospital dialysis unit will give me a chance to look at the chart first so I won't make a major blunder - like ask a pt who is ineligible for transplant due to a rare infection if he's on the transplant list.
DeLana
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Just yesterday: "What do you mean you don't pee? Where does it go?"
I told the person I'm great on long trips!
:beer1;
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Wow, so many of these things people have said to me!! It's ridiculous!
Some more that I haven't seen mentioned:
Myself a friend, and a friend of hers whom I've never met were on a crowded NYC subway. I was sitting across from them. The clueless friend literally YELLS across the friggin' subway: "So wait, you don't pee? Do you still... you know... poop then?" I just turned my head and acted like I didn't know her. :o
Another one I get -- ALOT is, "Aw, but you're so young!" --- yea, a-hole, like I don't know that? I get that one SO often, it irks me. Even doctors or nurses say it.
And my doctor, whom I've been seeing every month for the past 5 years - every. single. visit. he says "So are you on the list yet?" WTF man? YEA! I'm still on 4 lists.. One of my techs told me he just says that to make sure I'm staying on top of things.. yea.. right.
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Myself a friend, and a friend of hers whom I've never met were on a crowded NYC subway. I was sitting across from them. The clueless friend literally YELLS across the friggin' subway: "So wait, you don't pee? Do you still... you know... poop then?" I just turned my head and acted like I didn't know her. :o
Oh, my - I'm speechless! :o
DeLana
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Myself a friend, and a friend of hers whom I've never met were on a crowded NYC subway. I was sitting across from them. The clueless friend literally YELLS across the friggin' subway: "So wait, you don't pee? Do you still... you know... poop then?" I just turned my head and acted like I didn't know her. :o
Oh, my - I'm speechless! :o
DeLana
Ya I have been asked that as well!
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Myself a friend, and a friend of hers whom I've never met were on a crowded NYC subway. I was sitting across from them. The clueless friend literally YELLS across the friggin' subway: "So wait, you don't pee? Do you still... you know... poop then?" I just turned my head and acted like I didn't know her. :o
Oh, my - I'm speechless! :o
DeLana
Ya I have been asked that as well!
You should have offered to poop them a gold brick!
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Myself a friend, and a friend of hers whom I've never met were on a crowded NYC subway. I was sitting across from them. The clueless friend literally YELLS across the friggin' subway: "So wait, you don't pee? Do you still... you know... poop then?" I just turned my head and acted like I didn't know her. :o
Oh, my - I'm speechless! :o
DeLana
Ya I have been asked that as well!
You should have offered to poop them a gold brick!
Kitkatz, you nearly killed me. :rofl; I am looking at this in a classroom in our community college. A class next door is having a test. When I read that, I laughed out so loud!!!
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And the funniest part is...you couldn't share it with anyone!!! Right Bajanne?
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Oh, I don't know if this qualifies as ignorant...and I'm not really trying to offend anyone...and this was said to my husband (not me) by a co-worker:
God told me your wife is going to be healed by her kidney transplant and everything's going to be fine.
I can't wait until I go to the next work function and tell Mr. Religious, "neener weener...either you were playing "telephone" with God and misuderstood what he said, or God was trying to "punk" you.
Michelle ~ Treasure <~~~~ transplant lasted two months...pffth! and my son won't take it back, either, the brat!
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God told me your wife is going to be healed by her kidney transplant and everything's going to be fine.
Holy crap I thought I was the ONLY one who had people tell me that!!!
I have had 2 people tell me that in the last 5 years!
Man if I took them seriously I would have been very disappointed as I was "supposed to" have a kidney transplant last summer according to the one man!! But instead I ended up in the hospital for 6 weeks and had to give up PD and go to HD and was taken off the list temporarily! Guess he was wrong eh? lol :banghead;
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Oh, I don't know if this qualifies as ignorant...and I'm not really trying to offend anyone...and this was said to my husband (not me) by a co-worker:
God told me your wife is going to be healed by her kidney transplant and everything's going to be fine.
I can't wait until I go to the next work function and tell Mr. Religious, "neener weener...either you were playing "telephone" with God and misuderstood what he said, or God was trying to "punk" you.
Michelle ~ Treasure <~~~~ transplant lasted two months...pffth! and my son won't take it back, either, the brat!
lol, DAMN KIDS!!!
Seriously though, what a wonderful gift he gave you. Very selfless young man.
On the other topic, I believe people say things like that because it gives them some level of comfort in a situation they cannot understand. :beer1;
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
OUCH! Sorry they put you through that...
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
Ya it is amazing what some staff don't understand! When I went to London, ON (2 1/2 hrs up north) to where my transplant hospital is, as part of the transplant work up, a nurse there was telling me that I had to have a full bladder for one test. I told her over and over again how that was not possible and she tried to tell me that if I didn't have the full bladder that the test would have to be cancelled til I came in with a full bladder. I just ignored her and went in anyway and the test was never cancelled :P
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I hate when I go to the hospital and they want a urine sample... and you explain to them your on dialysis and you will pee when you pee if you pee....and the nurse leaves... and then comes back with water and says try drinking something! I'm like, uhm are you trying to overload me with fluids??? ::)
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I had someone look at my fistula, and it is quite "raised" or pronounced.. anyway someone said after I got them to feel the thrill/buzz (it's my party trick, it almost always freaks people out! LOL). Anyway they said "hey do you have batteries in there doing that? How can you go through security at the airport?"
*shakes head*
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
Just remember that you have the right to refuse any and all medical treatment - since you know that you can't possibly produce any urine, don't let them cath you.
When I worked on hospital floors, I realized that many nurses know little about the ESRD pt; they should, but unless they ever worked in dialysis many just don't realize that ESRD pts may not produce any urine at all, have strict dietary limits, fluid restrictions, and special accesses. If in doubt, have them call a dialysis nurse - there should at least be a nurse on call who can advise the floor nurse (or lab tech!)
Sorry this happened to you.
DeLana :grouphug;
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
Just remember that you have the right to refuse any and all medical treatment - since you know that you can't possibly produce any urine, don't let them cath you.
When I worked on hospital floors, I realized that many nurses know little about the ESRD pt; they should, but unless they ever worked in dialysis many just don't realize that ESRD pts may not produce any urine at all, have strict dietary limits, fluid restrictions, and special accesses. If in doubt, have them call a dialysis nurse - there should at least be a nurse on call who can advise the floor nurse (or lab tech!)
Sorry this happened to you.
DeLana :grouphug;
Ya that is true! Don't let them do anything to you that you know isn't right! you have every right to be a difficult patient and then when they are proved that you are right and they were wrong you will feel better about yourself for staying strong!
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]Not sure if this qualifies as ignorant or just plain stupid.
I had one nurse tell me to stop coming to this site becuz I ask too many questions now.
Another nurse said...and she agrees with the doctor. That this site is bad becuz it makes patients depressed.
Thats just ridiculous. You're most likely depressed becuz of what you're going throu. Also becuz this site is more informed then most doctors. You're coming here becuz you want/need support and info that doesn't come with BS from your docs/nurses/surgeons.
Plain and Simple---this site HELPS not depressess
EDITED: Fixed color, kitktz-Admin
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I think it is healthy to vent. Believe it or not....... :P but most people I know tell me what a good attitude I have. WELL, that is because I come here to bitch so they never get my rath.
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Not sure if this qualifies as ignorant or just plain stupid.
I had one nurse tell me to stop coming to this site becuz I ask too many questions now.
Some of them hate informed patients - they have to actually be informed to deal with us!
( A big fat raspberry Pbbblt to them, for their attitude, too!)
EDITED: Fixed color-kitkatz,Admin
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There is too much information on this site for us, the patients, and some medical professionals do not like us to be informed. I agree... big fat red raspberries to anyone who says not to use this site. Tell them to take two :chillpill; :chillpill; and call us in the morning!
I know I am able to deal with the stress of dialysis because there is somewhere for me to vent and talk to other people who have been where I am or are going through similar things. Also I feel good when I can help another patient with a problem or with advice because I have been there and done that. I wish this site had been around eight years ago when I started with this mess. It would have been invaluable. I struggled for years by myself. Every time the social worker said I am going to get a patient forum together at the dialysis center she weaseled out of it, or it was scheduled for a day I was not there or when I was on the machine. Thank goodness for Epoman and his site. I can deal a lot better with things related to dialysis with normal people who do not understand dialysis. I have a place to vent so my hubby and family do not get all of the anger focused onto them. It is hard to have a disease that you know is out to get you day in and day out. And the waiting for the transplant list gets to me and so I come here to vent and rant.
I am going to get off of my high horse now and let this topic go. Thank you all for being here!
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Tonight I went to a wedding (Sandman was supposed to come but had to go home early because the car company screwed him) and you shoulda heard some of the things people said about my health. One person was telling me, "Come on drink something!" and I said I can't and she said, "I have seen you drink before! Come on and drink!" and I said, "Ya .. when I HAD a kidney!!" and she just looked at me dumb like and I said, "you do know why I am on dialysis right?" and she said, "I thought that was because you only have one kidney!" :banghead;
Another said when I said I can't drink really because I have to watch how much I take in because I don't pee, said, "so you have a catheter for your pee?" and I said, "why would I need a catheter if I have no kidney?" and she just looked at me dumbfounded. :banghead;
Not sure if this qualifies as ignorant or just plain stupid.
I had one nurse tell me to stop coming to this site becuz I ask too many questions now.
Some of them hate informed patients - they have to actually be informed to deal with us!
( A big fat raspberry Pbbblt to them, for their attitude, too!)
As for coming to THIS site ... I will say that this site promotes support and communication! something we do NOT get from our staff!! Right? Sure I have had my problems with the administrator of this site but we are all in this together and I will never say that this site is a bad thing. Infact, ever since this site, I have become more informed and have impressed my dialysis nurses with my knowledge and even the Nephrologist said only 2 months ago that I will put him out of a job with how much I know ;) I say Good Job to all who help run IHD! :2thumbsup;
EDITED: Fixed color-kitkatz,Admin
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Just playing devil's advocate for a moment here.. I can actually understand in a small way why some medical types are upset about patients being informed and coming to a site like that - not for the support or the ability to vent, but because say something is discussed that involves something they are facing, and they read someone else's experience which might be quite bad which then worries them, and they ask the meds "hey I read that this happened to someone... could it happen to me?" - the other thing I think is that there is a general belief that anything on the internet could be wrong (and it is true, to some extents) and thus you might be getting incorrect information. Note I am NOT suggesting that about this site, just a general comment. I think one thing this site has confirmed even in the relatively short time I have been reading it is that everyone has different perspectives and experiences and it is actually comforting to me. I actually feel a little better about where I am at.
Anyway my response is that the medical staff should WELCOME our questions - whatever the basis behind them. They are there to help us help ourselves, and knowledge is power. Luckily the staff I deal with are always happy to answer even the dumbest question and explain things to me. I think it's important to know. For me, understanding helps to accept what is going on and why things are. Of course in my professional life (in IT) I like to try and explain to clients what is going on so they can understand more than "the computer doesn't work" - hopefully understanding willbring apprieciation for the problem and time/effort taken to fix it... mostly that works and people seem to apprieciate being given an explanation. And as a paitent I sure like the same in return.
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Back on Topic.
I was talking to a lady the other day and the subject came up as to why I didn't work. I told her I had kindey failure. She says....."one or both kidneys; Oh my gosh I hope only one failed" I am just speachless for a minute trying not to reach over and choke her.
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Choking her would not help. A new brain would help in the long run for someone that dumb!
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]Not sure if this qualifies as ignorant or just plain stupid.
I had one nurse tell me to stop coming to this site becuz I ask too many questions now.
Another nurse said...and she agrees with the doctor. That this site is bad becuz it makes patients depressed.
Thats just ridiculous. You're most likely depressed becuz of what you're going throu. Also becuz this site is more informed then most doctors. You're coming here becuz you want/need support and info that doesn't come with BS from your docs/nurses/surgeons.
Plain and Simple---this site HELPS not depressess
Agreed. Nurses are required to teach patients (and so are MDs, of course) and part of that is reassuring them about things they have heard or read - and not just on the Internet! It's amazing what some patients have been told by others - family members, acquaintances, neighbors - about procedures they are about to undergo. They should ask their nurses or doctors about this, and medical professionals should welcome this opportunity to reassure the pt.
BTW, what's even worse - I have heard a dialysis patient (a very unhappy, bitter individual) tell his neighbor, who was scheduled for a thrombectomy for his clotted graft, "Oh, I don't know if I woud agree to this - I know people who have died from this procedure!" :o It took a lot of reassuring for the frightened pt - who, of course, survived the procedure just fine*.
DeLana :grouphug;
*Of course, as with any procedure or operation, there is a very small risk involved. But it is remote and, although it needs to be addressed (see consent forms), it definitely does not need to be emphasized to a pt who has no other choice but to undergo the procedure (yes, he could get a perm cath instead, but he might just as likely - or unlikely - die from that procedure!)
EDITED: Fixed color-kitkatz,Admin
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I was talking to a lady the other day and the subject came up as to why I didn't work. I told her I had kindey failure. She says....."one or both kidneys; Oh my gosh I hope only one failed" I am just speachless for a minute trying not to reach over and choke her.
Oh, my :o
DeLana
P.S. Well, at least she knew that most people have two kidneys ::)
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I was talking to a lady the other day and the subject came up as to why I didn't work. I told her I had kindey failure. She says....."one or both kidneys; Oh my gosh I hope only one failed" I am just speachless for a minute trying not to reach over and choke her.
Oh, my :o
DeLana
P.S. Well, at least she knew that most people have two kidneys ::)
lol ya it is amazing how many people don't even know that!
it still kills me that my own brother's wife didn't know that you can live on one kidney and that I had none. She actually thought I was on dialysis to HELP MY REMAINING KIDNEY! :banghead; I can't believe she was like "drink! Come on have a drink" and thought I wasn't drinking because of my mom was at the wedding! :banghead;
Maybe that is why one of my friends thought that my dialysis was attached to my kidney ::) :banghead;
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I don't wish to insult anyone but I have been noticing something awkward here. Everyone here is disgusted with how informed society is ( or lack of it ) pertaining to CKD and I don't blame you for getting upset when someone decides to offer un-sound advice on how to clear that problem up. Obviously, they do not understand what's going on. But insulting or physically attacking those idiots does not help them to understand. I found that in most cases, you have to explain it in a way that only a child could understand.
But then again, some people just don't want to listen or don't even care because it does not effect them. Others maybe to horrified to believe something like this could actually be for real. I bet some of you never thought about that, huh? I tell you this though. If everyone actually knew what CKD is, you would all have a more sympathetic ear.
I'm thinking that maybe our schools should start teaching our childern in health class, what happens to you when your organs fail.
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Well, I'll admit to not being informed about a lot of things that I haven't had personal experience with. I didn't know much about Parkinson's until the mess before the election with Michael J. Fox and Rush Limbaugh. I looked some of it up on the internet. But I didn't need to know the details of the illness to understand that Limbaugh's comments were ignorant!
I'm thinking that maybe our schools should start teaching our childern in health class, what happens to you when your organs fail.
Actually, given the number of people who don't have any idea what their kidneys are, let alone where in the body they are located or what they do, I say they should start with basic biology, which seems to be sorely lacking.
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I'm sure we all take a diplomacy pill before we talk to these people. This thread is just a place to come vent our frustrations and make fun of what "little" people really know about CKD.
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I don't wish to insult anyone but I have been noticing something awkward here. Everyone here is disgusted with how informed society is ( or lack of it ) pertaining to CKD and I don't blame you for getting upset when someone decides to offer un-sound advice on how to clear that problem up. Obviously, they do not understand what's going on. But insulting or physically attacking those idiots does not help them to understand. I found that in most cases, you have to explain it in a way that only a child could understand.
But then again, some people just don't want to listen or don't even care because it does not effect them. Others maybe to horrified to believe something like this could actually be for real. I bet some of you never thought about that, huh? I tell you this though. If everyone actually knew what CKD is, you would all have a more sympathetic ear.
I'm thinking that maybe our schools should start teaching our childern in health class, what happens to you when your organs fail.
The main purpose of this site sandmansa is not to inform the general public, this site is here to allow dialysis patients to rant and vent about those ignorant people. There will ALWAYS be ignorant people in the world no matter how much we try to educate them. The members here will always be welcomed to rant and verbally attack this people, this is our little place on the Internet. :thumbup;
I think one of the problems is that most healthy people think "oh that could never happen to me" So they have no reason to inform themselves about serious medical issues. I still meet people to this day that have no idea what dialysis is.
- Epoman
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Today's grit-my-teeth-in-the-face-of-ignorance moment - 10 minutes after explaining to someone about the whole BMI under 30 to get on the transplant list business, and a lovely discussion of the 10 pounds I've lost and the 20 to go, they offered me dessert. And got annoyed when I said I didn't want any. "You'll be too skinny if you lose that much weight."
What? I just explained that losing 20 pounds would get me from the obese category to the overweight category. I am not about to become anorexic, for pete's sake. And I am not doing this for vanity's sake, either. Looking better will be a nice side effect, but if that was all I needed for an incentive, I'd have lost the weight a long time ago!
:banghead; :banghead; :banghead;
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I don't wish to insult anyone but I have been noticing something awkward here. Everyone here is disgusted with how informed society is ( or lack of it ) pertaining to CKD and I don't blame you for getting upset when someone decides to offer un-sound advice on how to clear that problem up. Obviously, they do not understand what's going on. But insulting or physically attacking those idiots does not help them to understand. I found that in most cases, you have to explain it in a way that only a child could understand.
But then again, some people just don't want to listen or don't even care because it does not effect them. Others maybe to horrified to believe something like this could actually be for real. I bet some of you never thought about that, huh? I tell you this though. If everyone actually knew what CKD is, you would all have a more sympathetic ear.
I'm thinking that maybe our schools should start teaching our childern in health class, what happens to you when your organs fail.
I have thought of that Jeff and I think that last line is great but you know with the failing education system they are not about to add that :P
I am always patient and have never belittled anyone for asking. I take the time and explain. But it gets frustrating and here is the perfect place for all of us dialysis patients to vent about this. I mean we can't vent to those "idiots" as you called them :P
I love explaining .. but sometimes it frustrates me when I realize that the people I have always been open with about my health has never even listened to a word I say and then tells me to drink at a wedding I go to with them ... :banghead;
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I'm not saying that it should be up to you ( the patients ) to teach the world about your health problems. I was just making note of how poor our education system is and what I would like to see future generations learn so this kind of aggravation does not have to happen.
Also, I was getting the impression that some of you were may have been biting people heads off for there ignorance. My apologies if I was mistaken.
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Also, I was getting the impression that some of you were may have been biting people heads off for there ignorance. My apologies if I was mistaken.
*Angie bites off Sandman's head*
lol don't worry.
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I am not going to argue about the educational system here in America, however let me point out one thing. As a teacher it is my educational responsibility to teach your children how to read, write, and do math. With the curriculum written as it is, I do not have time to teach anything else, much less the healthy way to live. Parents take your responsibilities back!
There I hijacked this thread. I am now returning you to your regular topic!
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Because serious illness is extremely rare in a human population which has been evolving for a million years to weed out all the genetic types likely to become sick, most people can abuse their body with drugs, drink, excessive food intake, lack of exercise, and lack of sleep and yet still remain essentially healthy. Just look at all the street people sleeping in cardboard boxes and drinking mouthwash for the inexpensive alcohol they can get from it and eating little else -- they all must have two perfectly functioning kidneys, even after years of living like that, or they would be dead!
As a result, when you let some healthy person know how sick you are, he will automatically assume you must have severely abused your body in some dreadful and stupid way in order to have become that ill, because in his own experience, no matter how careless of his health he may be, he simply cannot get sick.
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Because serious illness is extremely rare in a human population which has been evolving for a million years to weed out all the genetic types likely to become sick, most people can abuse their body with drugs, drink, excessive food intake, lack of exercise, and lack of sleep and yet still remain essentially healthy. Just look at all the street people sleeping in cardboard boxes and drinking mouthwash for the inexpensive alcohol they can get from it and eating little else -- they all must have two perfectly functioning kidneys, even after years of living like that, or they would be dead!
As a result, when you let some healthy person know how sick you are, he will automatically assume you must have severely abused your body in some dreadful and stupid way in order to have become that ill, because in his own experience, no matter how careless of his health he may be, he simply cannot get sick.
Stauffenberg, That is so true! I find it so strange that a lot of people think I must have done something to make my kidneys fail, and so now I "deserve" having dialysis because of whatever it was that I did. I didn't do anything! I got vasculitis! I want to say to some people, "This could happen to you, too, you know!"
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As a result, when you let some healthy person know how sick you are, he will automatically assume you must have severely abused your body in some dreadful and stupid way in order to have become that ill, because in his own experience, no matter how careless of his health he may be, he simply cannot get sick.
Amazingly enough that has been proven true as people keep asking me if I lost my transplant from DRINKING!! WTF!?!?!??!?!?!?!?! :banghead; :banghead; :banghead; :banghead; :banghead;
a lot of people think I must have done something to make my kidneys fail, and so now I "deserve" having dialysis because of whatever it was that I did. I didn't do anything! I got vasculitis! I want to say to some people, "This could happen to you, too, you know!"
EXACTLY!!! I had reflux!! It wasn't my fault the doc never believed my mom enough to run tests and find it and operate when I was a baby!! But ya .. maybe that is why people don't care about donating kidneys .. :( :'(
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As a result, when you let some healthy person know how sick you are, he will automatically assume you must have severely abused your body in some dreadful and stupid way in order to have become that ill, because in his own experience, no matter how careless of his health he may be, he simply cannot get sick.
one more example of that . .
My mother and aunt both died from liver failure. Every doc I've ever had automatically assumes during my family history discussion that it was alcohol related. Neither one of them drank - my mother's was medical error; my aunt's was genetic. There are plenty of reasons for liver failure that have nothing to do with cirrhosis.
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Or to me as they are reading my chart..."You're diabetic, right?" "No asshole. Read the chart. I am not diabetic." I hate the assumptions just because a lot of other people have ESRD and are diabetic, I fit the mold. Sheez!
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Or to me as they are reading my chart..."You're diabetic, right?" "No asshole. Read the chart. I am not diabetic." I hate the assumptions just because a lot of other people have ESRD and are diabetic, I fit the mold. Sheez!
Exactly
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Or to me as they are reading my chart..."You're diabetic, right?" "No asshole. Read the chart. I am not diabetic." I hate the assumptions just because a lot of other people have ESRD and are diabetic, I fit the mold. Sheez!
Oh so your not diabetic, my bad. >:D
Hope your stick is not too close. Aw that hurt. Next time I will make sure I satnd a little further from Kitkatz BIG stick. That grumpy diabetic. You know what she is like when her blood sugar drops. Aw, need to stand further, Aw, Back. Damn that BIG stick Aw.
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:rofl; :rofl; :rofl;
If that were any funnier, I would be laughing!
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Oooooops....is this a site for Dialysis patients?....oooops....wrong site ....I have Dualyisis.... >:D
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Oooooops....is this a site for Dialysis patients?....oooops....wrong site ....I have Dualyisis.... >:D
See attachment :P
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Hmmm . . - wouldn't that be Duelalysis? Make one of them the patient and put one in a white coat - :D
I think my doc would be much more helpful if I had a light saber. . .
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Hmmm . . - wouldn't that be Duelalysis? Make one of them the patient and put one in a white coat - :D
I think my doc would be much more helpful if I had a light saber. . .
:D hahahahha!!! :clap;
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Because serious illness is extremely rare in a human population which has been evolving for a million years to weed out all the genetic types likely to become sick....
What are you talking about? Serious illness is extremely rare?
Tell that to folks with breast cancer, or colon cancer, or prostate cancer, or AIDS, or heart disease, or diabetes, or Hepatitis C.
Your theory doesn't wash.
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Because serious illness is extremely rare in a human population which has been evolving for a million years to weed out all the genetic types likely to become sick....
What are you talking about? Serious illness is extremely rare?
Tell that to folks with breast cancer, or colon cancer, or prostate cancer, or AIDS, or heart disease, or diabetes, or Hepatitis C.
Your theory doesn't wash.
Well said.
DeLana :2thumbsup;
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There are tens of thousands of different TYPES of disease, but some of these types are represented by only a handful of individuals per country, such as Hutchinson-Gilford's Disease, Progeria, von Recklingshausen's Syndrome, etc. Anecdotal impressions to the contrary, hard epidemiological data shows that only a small percentage of the population is ever seriously and chronically ill. Just look at renal failure: it may look like a major issue to us, but in fact, only one person in a thousand is on dialysis in the U.S. -- that's 0.1 %.
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There are tens of thousands of different TYPES of disease, but some of these types are represented by only a handful of individuals per country, such as Hutchinson-Gilford's Disease, Progeria, von Recklingshausen's Syndrome, etc. Anecdotal impressions to the contrary, hard epidemiological data shows that only a small percentage of the population is ever seriously and chronically ill. Just look at renal failure: it may look like a major issue to us, but in fact, only one person in a thousand is on dialysis in the U.S. -- that's 0.1 %.
Well that would explain why there isn't a lot of commercials educating everyone like there is for cancer or smoking even ::). I remember how they went all crazy with education for AIDS.
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There are tens of thousands of different TYPES of disease, but some of these types are represented by only a handful of individuals per country, such as Hutchinson-Gilford's Disease, Progeria, von Recklingshausen's Syndrome, etc. Anecdotal impressions to the contrary, hard epidemiological data shows that only a small percentage of the population is ever seriously and chronically ill. Just look at renal failure: it may look like a major issue to us, but in fact, only one person in a thousand is on dialysis in the U.S. -- that's 0.1 %.
But of course what I was saying was that many people, if not most, know someone who is seriously ill.
Lets get real. Progeria??
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I'll grant that most people probably know someone who is serioiusly ill, but how well do they know what the illness really means? Most people who knew me when I was on dialysis either did not know I was a renal patient at all or, if they did, thought renal disease meant you had to take diuretic pills to urinate.
But the actual incidence of severe chronic illness -- after a million years of human evolution when everyone carrying either these inherited diseases, the disposition to develop them, or a lack of resistance to them was killed off by natural selection -- is small. For example, the military with the strictest criteria in the world for accepting draftees for military service is the United States armed forces, and in World War II, when a high degree of nearsightedness, flat feet, insufficient teeth to chew hardtack, homosexuality, extreme tallness, shortness, or obesity, such that standard army issue boots and uniforms would not fit, were all reasons for rejecting people as "medically unfit" for service, 67% of all draftees were nonetheless found fit. If even such trivial and common "problems" were grounds for finding someone unfit, the number of people rejected for truly serious medical conditions must have been a very small part of the 33% group of those unfit for service.
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When people hear that Jenna has kidney failure and needs a transplant they ask, of course. "Is she on the list?"
I look at them and ask, "List?"
I love watching them try to explain it.
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You should see their faces when I explain that the list is 8 years loooooooong. Usually they look to the other side.... ::)
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When people hear that Jenna has kidney failure and needs a transplant they ask, of course. "Is she on the list?"
I look at them and ask, "List?"
I love watching them try to explain it.
:rofl; :rofl; :rofl; :rofl;
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I was talking to a lady at the bustop the other day and she was telling me about the church she goes too. As usual I just pretend Im listening and she said she would put in a prayer for me. I thought that was lovely of her until she said how many people have benefited from their prayers and that hopefully if she puts one in for me I wont need a kidney. What the??
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So the medical field doesn't know all that much either....everytime I go to the ER, they ask for your history of course, and I have to say I had a kidney transplant before. Everytime, this is the first question after I say that.. "Which kidney?"... Which kidney WHAT?? I had a whole new kidney put in... WTF.... where do these people go to school??? .."Was is it the right or left kidney?" uhm, neither? My kidneys failed and I had a new one put in.. so I have 3 kidneys in me, all of which dont work now. ::)
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many people have benefited from their prayers and that hopefully if she puts one in for me I wont need a kidney. What the??
What the? lol
Some people .. I have come across that. Yes I am a strong believer in miracles .. but do they honestly think we can live without a kidney with out even any artificial kidney or anything? We need a kidney!
It really is amazing how little people know but what bugs me more (since I don't mind explaining) is the ones who THINK they know and try to tell YOU as if they have MORE experience with kidney disease than we do! :banghead; :banghead; :banghead;
So the medical field doesn't know all that much either....everytime I go to the ER, they ask for your history of course, and I have to say I had a kidney transplant before. Everytime, this is the first question after I say that.. "Which kidney?"... Which kidney WHAT?? I had a whole new kidney put in... WTF.... where do these people go to school??? .."Was is it the right or left kidney?" uhm, neither? My kidneys failed and I had a new one put in.. so I have 3 kidneys in me, all of which dont work now. ::)
What??? I have never been asked "WHICH Kidney" that is absurd! Why would they ask which kidney? I don't get that! That is truely the MOST absurd thing I have ever heard! I mean, really, what difference does it make if it was left or right? It doesn't work, left or right do the same as each other! wtf :banghead;
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Angie, when are you going to stomp your feet and yell at these stupid people?? Join me in standing up for yourself with the medical community! Nice only goes so far.
Now that I have said some ignorant things, I return you to the original topic. Thank you!
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So the medical field doesn't know all that much either....everytime I go to the ER, they ask for your history of course, and I have to say I had a kidney transplant before. Everytime, this is the first question after I say that.. "Which kidney?"... Which kidney WHAT?? I had a whole new kidney put in... WTF.... where do these people go to school??? .."Was is it the right or left kidney?" uhm, neither? My kidneys failed and I had a new one put in.. so I have 3 kidneys in me, all of which dont work now. ::)
Maybe they think it's like a heart transplant - take the old one out and put the new one in the same place? You would think ER staff would have a clue, though.
I was talking to a lady at the bustop the other day and she was telling me about the church she goes too. As usual I just pretend Im listening and she said she would put in a prayer for me. I thought that was lovely of her until she said how many people have benefited from their prayers and that hopefully if she puts one in for me I wont need a kidney. What the??
Ooooh, I want some of that kool-aid!
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Hmm mmm...*clears throat*
OK, I ran into this lady that lives in my building. She looked at my arm/fistula and said; Oh my, that looks SOOOOOOO swollen. ::)
I told her it's not swollen. Thats just how it looks. Then she tells me; she thinks they need to start using a different spot. :banghead; :banghead; I told her there is no other spot. This one works great, my fistula is strong and it gets bigger over time as you use it. She just kind of shook her head and walked away.
I tell ya, it seems like I explain the same thing to the same people over and over again. Aarrgggggg :banghead; :o
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People just don't understand but what gets to me is when they THINK they understand more than you :P
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Well, I am still learning more and more. ;)
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Well, I am still learning more and more. ;)
I wasn't referring to you :P
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Well, I am still learning more and more. ;)
I wasn't referring to you :P
I never said you, or anyone else here was referring to me. I just wanted to jump in but couldn't come up with a complaint or rant about ignorant things said that dealt with dialysis or kidney failure that was not already brought up and I didn't want to sound repetitive.
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You should see their faces when I explain that the list is 8 years loooooooong. Usually they look to the other side.... ::)
I'm going to hell...because I usually add at that point..."and I ain't gonna live that long" <wicked grin>
actually, when i got on the list 2 years ago, they said it would be at least a 10 year wait...(i wasn't worried, though, because i had a living donor). but then they discovered that i had a high pra...and then i had two transfusions during my failed transplant... and unless i hire a rather effective hitman, i won't be reaching the top of any list, but the fbi most wanted.
michelle ~ treasure <~~~~~~~~ could be on the most attractive female prisoner list-- aready have the scars...
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It was just the other day when I was at work, some of my fellow co-workers were picking on another co-worker. they were discussing why the one needs to use Viagra. ::) Anyway, he made note that he needs several pills to to keep an erection.
I made note to him that with taking so many pills, that he needs to keep an eye on his blood pressure as high blood pressure could damage his kidneys. His comment was I don't need kidneys to have sex. I told him, that maybe true but you won't live long if you can't pee. His next comment was that he could have some sort of pee bag surgically implanted. :o I couldn't help but think to myself, what an idiot. So I told him, if your kidneys fail then you can't make pee so his pee bag idea was not going to do him any good. I also told him that if his kidneys failed, that he would need to go on dialysis. He asked me what that was so I tried my best to explain it.
The only thing out of his mouth then was simply "Oh." That is what your girlfriend is on, right? :-/
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It was just the other day when I was at work, some of my fellow co-workers were picking on another co-worker. they were discussing why the one needs to use Viagra. ::) Anyway, he made note that he needs several pills to to keep an erection.
I made note to him that with taking so many pills, that he needs to keep an eye on his blood pressure as high blood pressure could damage his kidneys. His comment was I don't need kidneys to have sex. I told him, that maybe true but you won't live long if you can't pee. His next comment was that he could have some sort of pee bag surgically implanted. :o I couldn't help but think to myself, what an idiot. So I told him, if your kidneys fail then you can't make pee so his pee bag idea was not going to do him any good. I also told him that if his kidneys failed, that he would need to go on dialysis. He asked me what that was so I tried my best to explain it.
The only thing out of his mouth then was simply "Oh." That is what your girlfriend is on, right? :-/
I love how people try to tell you what they would do, like they KNOW what happens... It sounds like you made him go speechless after telling him what really happens... I bet he felt stupid. ::)
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Tell that ignorant ass, that "the Pea bag" does not prevent kidney failure. And he can cram his opinion where the sun does not shine!
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Ya people like him who think it is no big deal and that he can "just get a pee bag" don't realize that without kidneys you die and that is why we encourage people to sign their donor card. It is people like him who don't sign because they think it is no big deal.
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I love how people try to tell you what they would do, like they KNOW what happens... It sounds like you made him go speechless after telling him what really happens... I bet he felt stupid. ::)
Well, I don't know how stupid I made him feel but I sure hope I gave him something to think about.
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Slight hijack.. not something ignorant that was said to me, but something ignorant that was GIVEN to me.
From my father. A dentist by trade...
So for my birthday what does he give me? A 750ml bottle of bubbly?!!
HELLO?!?!?!! WHAT WERE YOU THINKING?!?!
(note: I live alone). Who am I goint to drink it with? the cat?
the mind boggles....
So I asked him about it and he said "oh you could drink it with family etc" yeah, thanks....
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I know. My Mother gave me a Mrs. Tea Maker right after I came home from starting dialysis eight years ago. What in the hell was I supposed to do with that? I was a brand new dialysis patient and just starting to have to watch fluid gains. Stupid gift!
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I'd like a tea maker ... send it over to me. :o
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Sorry it was returned and I bought nightgowns to hang out in while I was ill.
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I'd like a nightgown!
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Okay - I want my official club membership card now!
I got my dialysis schedule - it's T-TR-Saturday, starting at noon. The family Christmas party for my side of the family is scheduled for Saturday. I don't expect them to change it - it's been scheduled for almost two months now, and everyone else has reworked their schedules to fit. But I did tell dad and stepmom that I would be arriving late, since the party will be starting at 4, and I have an hour and half drive from the center to their place.
Stepmom says "Can't you just skip it?
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Stepmom says "Can't you just skip it?
skip it.....well, unfortunately i do it often. especially if i go to my moms for the weekend. i wont come home till monday night so i missed monday dialysis. then i have to go sat, sun, mon and tues without dialysis.
anyways...............
i was talking to a co-worker about doing dialysis becuz my kidneys dont work. she asked, which one? ? ? LOL
that made my day.....
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Okay - I want my official club membership card now!
I got my dialysis schedule - it's T-TR-Saturday, starting at noon. The family Christmas party for my side of the family is scheduled for Saturday. I don't expect them to change it - it's been scheduled for almost two months now, and everyone else has reworked their schedules to fit. But I did tell dad and stepmom that I would be arriving late, since the party will be starting at 4, and I have an hour and half drive from the center to their place.
Stepmom says "Can't you just skip it?
I just love it when they say "can't you just skip it".... i'm like, were you even listening to me when I explained to you what dialysis is and why I need it? Obviously not if your saying just skip it... ::)
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I'd like a nightgown!
Flannel or lace? :rofl;
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I'd like a nightgown!
Flannel or lace? :rofl;
oh oh, if ur giving 'em out. i want lace.
i want to feel pretty, oh so pretty.
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If you choose lace, I must insist you get the matching slippers, Tubes. :clap;
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If you choose lace, I must insist you get the matching slippers, Tubes. :clap;
:rofl;
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I need to see pictures of both of you so I can pick the right nightgowns. Did you want the lace teddy or the midnight blue crotchless panties? LOL
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if im getting slippers to match i MUST have the panties also.
midnight blue crotchless panties kitkatz...now thats what im talking about, all lacey thou
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Now, you are sending me the cash for these things? No? Oh well. It will have to be a dream.
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Okay - I want my official club membership card now!
I got my dialysis schedule - it's T-TR-Saturday, starting at noon. The family Christmas party for my side of the family is scheduled for Saturday. I don't expect them to change it - it's been scheduled for almost two months now, and everyone else has reworked their schedules to fit. But I did tell dad and stepmom that I would be arriving late, since the party will be starting at 4, and I have an hour and half drive from the center to their place.
Stepmom says "Can't you just skip it?
I just love it when they say "can't you just skip it".... i'm like, were you even listening to me when I explained to you what dialysis is and why I need it? Obviously not if your saying just skip it... ::)
Ya no kidding! That is exactly how I felt when family members have said that to me (not immediate family but close enough where they have heard me explain dialysis at least a few times over the last 5 frickan years!! :banghead; )
I really feel like they do NOT listen to a word I say! Yet they ask as if they are interested and I am dumb enough to fall for it and believe they really want to know. My mom has always told me that I am too dumb to realize when people are "just being polite" .. :-[
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People who are just being polite usually do not make insensitive comments to you about your disease! A little foot stomping may be in order around some people!
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I hate to talk about my own family ... but... when I come home from dialysis and feel like crap they phone and tell me - "oh well, tomorrow you'll be better". I find this kind of conversation very dismissive.
Or...I love it when they tell you - "gee you look great, you must be exaggerating how crappy you're feeling". I don't get how the exterior is an indicator of the interior.
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Or the cowroker who walked up to me one day I am feeling pretty good and says: "You look awful". Well thanks a bunch!
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Hey Richard
I'll come and drink it with you Richard......I am always in Melbourne on business.
I can't believe it....my dad is a lawyer and he would have done exactly the same...and he is on dialysis himself
You wonder how they got through uni don't you...
Sorry, I just had to LOL because it was all too familiar
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How about the medical professional who says: You look pretty good for someone who has been on dialysis for as long as you have."
Just what is the right answer to that one?? "Gee thanks. I try hard." or "See what dialysis can do for you." or "Yeah, it is great way of life."
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So the medical field doesn't know all that much either....everytime I go to the ER, they ask for your history of course, and I have to say I had a kidney transplant before. Everytime, this is the first question after I say that.. "Which kidney?"... Which kidney WHAT?? I had a whole new kidney put in... WTF.... where do these people go to school??? .."Was is it the right or left kidney?" uhm, neither? My kidneys failed and I had a new one put in.. so I have 3 kidneys in me, all of which dont work now. ::)
Forgive me for my ignorance but I have been asked the same question because my transplanted kidney was put in my right abdomen. Knowing the answer is extremely important should you need further abdominal surgery. So you may have 3 non-functioning kidneys in your body but one is a left kidney, one is a right kidney and the transplanted one is? If your torso is like mine, you have so many scars, you can't tell which is for what!
And you might be interested in knowing that the left kidney has longer vessels and is usually the one used. This is now the subject of debate since the left kidney is routinely taken from living donors even if the right doesn't function as well (which doesn't seem fair - to give the better kidney to the recipient) It is now also the subject of studies as to whether laparoscopic donors can just as easily donate the less functional kidney.
Frankly, I don't find this ignorant at all.
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OK, so Tuesday was my first double stick for my fistula, They have to stick me way done by my wrist so it's pretty sensitive, needless to say I started crying ( I normally do not cry) Anyway my one nurse had the guts to tell me I would never be able to get a tattoo, Granted I don't have any tattoos, but I have to say that a dialysis needle is a whole heck of a lot bigger than a tattoo needle. What do all of you that have tats and do dialysis think? Should I be upset?
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Devlinswife attack on nurse <SMACK>
Unbelievable.
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I take it the nurse (1) doesn't have any tattoos, (2) doesn't have any sense, and (3) may be in the wrong business.
I have a tattoo of flowers that encircles my wrist, which took a very long time to execute. Yes, I felt it, and yes, it hurt sometimes, but it couldn't have been anything compared to getting big needles poked in your fistula! The tattoo needles are smaller, and do not actually penetrate very deeply.
Pfffbbttt to that nurse! >:( (and feel free to quote me!)
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Pfffbbttt to that nurse! >:( (and feel free to quote me!)
I second that.. Pfffbbttt, ;)
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I've had 3 tattoos done, the last of which was VERY painful, and I'd still run in fear of those dialysis needles. So the very fact that you were able to sit there and allow them to stick you, is testament to your pain threshold. Don't let the stupidity get you down! :cuddle;
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Pfffbbttt to that nurse! >:( (and feel free to quote me!)
I second that.. Pfffbbttt, ;)
I third that.. Pfffbbttt, ;)
It amazes me to think about some of the ignorant nurses I have met in my time. It makes me wonder if they were "giving" away free nursing licenses at one point. Some people should just NOT be a nurse, but what really bothers me are nurses who talk about things like they have the facts, yet they know nothing about the matter and they do it to save face.
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OK, so Tuesday was my first double stick for my fistula, They have to stick me way done by my wrist so it's pretty sensitive, needless to say I started crying ( I normally do not cry) Anyway my one nurse had the guts to tell me I would never be able to get a tattoo, Granted I don't have any tattoos, but I have to say that a dialysis needle is a whole heck of a lot bigger than a tattoo needle. What do all of you that have tats and do dialysis think? Should I be upset?
You have every right to be. As I nurse, this makes me cringe :-[
DeLana :grouphug;
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Hi DeLana, great to see your back, hope all is well with you :2thumbsup;
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there's being a few, I've only being on dialysis for 6 mos.,there is plenty of time!!
well, the most recent one was from a friend who told me to drink a gallon (per day) of this wierd
mexican herb tea. another was about the weight I've lost. A friend told me,
man, I need to get on that dialysis thing so I can loose some weight!! :banghead;
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Girl at a party I was at last night, "Wow I wish my skin was that pale". Said this after hearing me discussing my lack of rbc to a friend. I just gave her the "you poor stupid girl" smile and walked away.
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Girl at a party I was at last night, "Wow I wish my skin was that pale". Said this after hearing me discussing my lack of rbc to a friend. I just gave her the "you poor stupid girl" smile and walked away.
Sometimes all you can do is just shake your head.
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Wonder why carrying weapons in public dwelling is illegal these days..... some people are only alive because it is against the law to kill them. >:D :)
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Girl at a party I was at last night, "Wow I wish my skin was that pale".
That's when you say, "Really!? Because I could arrange that for you." >:D
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Wonder why carrying weapons in public dwelling is illegal these days.....
There are lots of reasons actually but #1, It's against the law. Only law enforcement officers are allowed to brandish weapons in public. Simply because the officers are properly trained in the use or their firearms and they are the ones getting paid to up-hold public safety.
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Wonder why carrying weapons in public dwelling is illegal these days.....
There are lots of reasons actually but #1, It's against the law. Only law enforcement officers are allowed to brandish weapons in public. Simply because the officers are properly trained in the use or their firearms and they are the ones getting paid to up-hold public safety.
Sorry I must have forgotten to put up my Sarcasm Flag.
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Simply because the officers are properly trained in the use or their firearms and they are the ones getting paid to up-hold public safety.
Yeah, tell that to the guys in NYC who were shot just for being black. :'(
I know, off topic ... but maybe not. >:D
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The most ridiculous thing I have ever had someone say to me was from my own farther.
He asks.....
I know your on a machine to keep you alive, But how is your health?
my reply after much screaming.........I'm on a f*cking machine that beats me senseless and makes me sick three times a week and your asking about my health?
OH MAN!
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Only law enforcement officers are allowed to brandish weapons in public. Simply because the officers are properly trained in the use or their firearms and they are the ones getting paid to up-hold public safety.
BS :banghead;
Apply that to the First Amendment and just see how far that lead balloon flies.
"Limit free speech to only the Press as they are the ones properly trained in the use of free speech."
BTW law abiding citizens use firearms for protection of life and property many more times per day than the police do.
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The most ridiculous thing I have ever had someone say to me was from my own farther.
He asks.....
I know your on a machine to keep you alive, But how is your health?
my reply after much screaming.........I'm on a f*cking machine that beats me senseless and makes me sick three times a week and your asking about my health?
OH MAN!
Ya some of the things people say .. but they are just curious but don't know the right questions to ask. I like that more than people who just jump and make assumptions about our health. Like the ones that say my dialysis is in the way of Christmas dinner and can't I just skip it as if I am the one putting them out! Heck THEY can do dialysis for me instead! :P ::)
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The most ridiculous thing I have ever had someone say to me was from my own farther.
He asks.....
I know your on a machine to keep you alive, But how is your health?
my reply after much screaming.........I'm on a f*cking machine that beats me senseless and makes me sick three times a week and your asking about my health?
OH MAN!
I don't see that as an ignorant question. More like an inaccurate question.
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since there was mention of weapons and guns, i thought i would mention this.....
a law was past in ks that allows civilians to carry concealed firearms. you have to take a training class and pay so much money before you are licensed. i dont know if any other states have the same law.
anyways......
if i cramp real bad and complain a few nurses like to say...'you couldn't handle having a baby', then they do the breathing exercises in my face. at first i didnt like it, but now i just joke along with em.
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I know your on a machine to keep you alive, But how is your health?
OH MAN!
...hmmmm. Funnily enough, those of us on the Home Haemo prog. at our hospital,
have to fill in a questionnaire once every couple of months. One of those 'pick a number from 1-5' types,
to give the level of yes/no answer. The question "do you consider yourself as healthy as the next person?"
and a couple of similar ones is on there. Difficult to answer these with a "1" or even a "5" when you want
to actually write a paragraph....
If the "next person" is terminally ill, it's a "1"
" " " " is on the national athletics squad, the answer is about "35" ::)
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The most ridiculous thing I have ever had someone say to me was from my own farther.
He asks.....
I know your on a machine to keep you alive, But how is your health?
my reply after much screaming.........I'm on a f*cking machine that beats me senseless and makes me sick three times a week and your asking about my health?
OH MAN!
I don't see that as an ignorant question. More like an inaccurate question.
I think it is a fair question. I'm also on a machine, but my health is good. I have good energy levels and feel that I am able to be as active as everybody else in my office if not more so than some. As opposed to somebody who might have a chest line infection and is ill.
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I swear, by all that I've ever found holy, the next person who gives me a pitying look and says, "You're much too young to be this sick," is gonna get smacked.
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When the photographer was at our house taking pictures for the news story, he asked Jenna:
"What do you think about when you are at the dialysis clinic?"
Jenna's reply "I try not to think at all."
He asks, "Well, do you ever meditate, or think about what you're going to do when you get off that day?"
Jenna said, "No. I will tell you what it's like, being at dialysis. It's like waiting for a bus."
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( me talking to myself) " To dialysis or not to dialysis, that my friend IS the question"
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My mother has been around me since the beginning of dialysis eight years ago. I cannot figure out why she says when I say I am tired and taking a nap: "Why are you so tired?" Is she just a nitwit or just does not get it? I work as a teacher for eight hours a day, i then do four hours of dialysis on top of that for four hours each treatment and she has the balls to ask me why I am tired! WTF!!!
I am going to lose it all over her one day! Lord, please help me!
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This one couple we camp and fish with all summer got into a habit of asking me if I would mind picking up her groceries after I run home and dialyze. Ya, no problem, that's just what I feel like doing after dialysis. After about 4 times of saying, " ya, ok" (always the nice guy) I lost it! No I'm not going shopping at 8 or 9 at night before I come back out to camp! Get off your fat ass get in your own truck and go to town! Or maybe, plan a little better, geez.
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since there was mention of weapons and guns, i thought i would mention this.....
a law was past in ks that allows civilians to carry concealed firearms. you have to take a training class and pay so much money before you are licensed. i dont know if any other states have the same law.
There is only 3 states in the union that don't have that law. Wisconsin is one of them,and I am really pissed that they don't pass it.
A co worker knowing I am leaving for dialysis-"hope you have a nice night" ::)
EDITED: Fixed Quote Tag Error - Sluff, Moderator
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I show people my dialysis arm and they totally freak out. Or the kid who asked: What happened to your arm? I tell the kids I had surgery. Adults just totally freak out over the look of the graft in the left arm. So now I wear longer sleeves. "What the hell happened?" or "Gross."
It stops people dead in the water if they think dialysis patients have it easy. I just roll up the sleeve and let them look at it. It is my badge of courage now.
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I had kinda forgot about this until I talked to my one daughter earlier tonight. We used to live in the same neighborhood as a ex-famous, ex-WWF wrester. All our kids were around the same age and were friends. Their dad had a brother who was a dialysis patient but would go lay on the beach in the states for a week at a time and show up back at dialysis very ill. He'd stay for a couple of weeks until he felt a little better the off he'd go again skiing for a week or whatever. That went on for about a year and he eventually died. Jai came home one day sobbing. My friends mom says your going to die because your on dialysis. Some of the conversations "adults" had with my kids really pissed me off. You try so hard to educate them on what's going on. They all got really good at filtering through things people said. I had one parent want to know why I had "track" marks. Too many mom's in that neighborhood had nothing better to do but shit like that.
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The neighborhood kids walked up to me as I was getting out of my car and asked me if I had AIDS/HIV. I had a bandage on my arm and looked like hell. I told them no, I had kidney failure and was on dialysis. I don't think they believed me. They never talk to me.
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I would say just "**** them all". They'll face their day of reckoning one day and may or may not regret their deeds.
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What REALLY gets to me is not the ignorant questions of strangers or acquaintances (at least, not anymore) but the REPEATED stupid questions of family and good friends. Example: Me arriving at family whatever (insert birthday or holiday) get together:
My Dad, as I walk in the door, "What can I get you to drink.?"
Me, "Nothing, right now. I'll have something with dinner."
Dad, "Don't you want a glass of wine or a beer?"
Me, "No, I'll have something with dinner."
Step-mom, "We have water."
Me, "No, thanks."
Dad & Step-mom together in harmony, "Can you have some soda or juice?"
Me, (taking out my concealed weapon for which I do not have a permit and pointing it at their surprised faces...) "IT'S QUANTITY NOT QUALITY AS I'VE TOLD YOU FOR THE LAST FREAKIN' 17 YEARS!)
Then we have the conversation about how they didn't put any salt in the ham that they're serving for dinner....did I mention my Dad is supposed to be on a low salt diet for his heart.....so, yeah right, good choice...no added salt in the ham...thanks.
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Ah, good family times! :rofl;
I asked for a small glass of water at the last family gathering. My dad asked me if I wanted a shot glass, or something bigger. Ah, well, at least he remembers that I'm fluid restricted!
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My mother has been around me since the beginning of dialysis eight years ago. I cannot figure out why she says when I say I am tired and taking a nap: "Why are you so tired?" Is she just a nitwit or just does not get it? I work as a teacher for eight hours a day, i then do four hours of dialysis on top of that for four hours each treatment and she has the balls to ask me why I am tired! WTF!!!
I am going to lose it all over her one day! Lord, please help me!
Well, after all, you have a light workday, not like you're digging ditches or anything. Then you just sit around in a chair at dialysis. Come on Kit, buck up!
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LOL :rofl; :rofl; :rofl; :rofl;
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A Nurse once asked me how do you pee without kidney's??? I told her through my finger. She gave me a strange look and left, thank God!!! I thought she was kidding.
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A Nurse once asked me how do you pee without kidney's??? I told her through my finger. She gave me a strange look and left, thank God!!! I thought she was kidding.
A nurse? I thought any nurse would know you can't without kidneys :o
Of course one time I was told that I HAD to have a FULL bladder for some test after my kidney stopped producing anything .. and she kept arguing with me that I couldn't go for the test even though it was my Nephrologist who scheduled it (I think he would know I would not be coming in with a full bladder ::))
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:rofl; :rofl; :rofl; You guys are so funny!
I thought all the morons were attracted to just me. I think I have heard all of the above. Although my GP (local doctor) asked me if they transplant one or two kidneys. O.k that may sound reasonable..... but I was being worked up for a LIVE donation transplant! :o You would think she would know the answer! :banghead; aahhhhhhh
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Sometimes I wonder where/how some nurses get licensed. The nurse at my ob/gyn sees me every year and always ask me very nicely, with a kind of sad puppy look, if I'm still on dialysis, "Yes" I say; then she hands me the cup and points to the restroom and says "Just bring it up to the front when you're done." I'm often tempted to pour some Mountain Dew in there and turn it in.
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Sometimes I wonder where/how some nurses get licensed. The nurse at my ob/gyn sees me every year and always ask me very nicely, with a kind of sad puppy look, if I'm still on dialysis, "Yes" I say; then she hands me the cup and points to the restroom and says "Just bring it up to the front when you're done." I'm often tempted to pour some Mountain Dew in there and turn it in.
Or some red Gatorade and shock them into thinking you are peeing blood. >:D
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:rofl; :rofl; :rofl; You guys are so funny!
I thought all the morons were attracted to just me. I think I have heard all of the above. Although my GP (local doctor) asked me if they transplant one or two kidneys. O.k that may sound reasonable..... but I was being worked up for a LIVE donation transplant! :o You would think she would know the answer! :banghead; aahhhhhhh
hehehe :rofl; :urcrazy; :rofl; Now that's a REALLY generous living donor!!
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First silly comment i had was while waiting around at the hospital, a woman sat next to me decided to tell me all her troubles , then asked what i was there for , When i told her i had kidney failure , she said , 'oh i've never heard of that , is it catching? Then there is my 'best' friend, who thinks my life is one long holiday, her passing comment was , 'oh your so lucky ,not having to go out to work every day'!!!
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"I swear, by all that I've ever found holy, the next person who gives me a pitying look and says, "You're much too young to be this sick," is gonna get smacked."
I hate being told that!!! I am 29 now, but we found my kidney disease when I was 14, so I have heard it thousands of times.
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I'm not on dialysis yet, but I've heard my share of stupid statements.
When I was first diagnosed with CKD, my now-ex-mother-in-law (who sees herself as an expert on nutrition) told me I should just drink more water. She implied that it was my fault somehow that I had CKD, that I didn't drink enough.
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I'm not on dialysis yet, but I've heard my share of stupid statements.
When I was first diagnosed with CKD, my now-ex-mother-in-law (who sees herself as an expert on nutrition) told me I should just drink more water. She implied that it was my fault somehow that I had CKD, that I didn't drink enough.
That reminds me, I've been having a sore throat and a cold all week and I told one of the nephrologists who does rounds at dialysis how I was feeling. He looked at my throat and said it wasn't infected then he said to me (remember this is while I was on dialysis) Keep hydrated and drink a lot of hot teas with lemon and honey. I stared at him for a second and said If you say so. :banghead; :banghead; :banghead; Dumb ass!
LOL
Donna
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That reminds me, I've been having a sore throat and a cold all week and I told one of the nephrologists who does rounds at dialysis how I was feeling. He looked at my throat and said it wasn't infected then he said to me (remember this is while I was on dialysis) Keep hydrated and drink a lot of hot teas with lemon and honey. I stared at him for a second and said If you say so. :banghead; :banghead; :banghead; Dumb ass!
LOL
Donna
Oh, no! Well, at least it's not just nurses whose ignorance can be striking ::)
DeLana
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The person who made a comment to me was not really being stupid or ignorant, but more insensitive than anything. First, I will provide you with a little back story. One time back in 1994, when I was taking my first run at this dialysis thing, I had decided I was just plain mentally tired of the whole dialysis process. The physical component is draining, but the real strength we have lies in the fact that we are able to walk through those clinic doors (hopefully with our heads held high) three times a week. Anyway, on the night that I felt completely drained, I called up my grandmother and asked if I could stay with her. She made me scrambled eggs (post dialysis munchies), I got a good night sleep and felt refreshed in the morning. That day, I got the call for the transplant. Part of me associates this good luck with my grandmother, who is very important to me. Fast forward to this past summer. I am now married to a wonderful woman who helps me through the rough times. Unfortunately, she was in another city because her dear uncle passed away, so I was alone. His death affected me, so I knew I was going to have one of those psychologically draining nights. I decided to call my grandmother and ask if I could come over after dialysis.
I was talking to my mom about this and she asked me why I was being such a wuss and why couldn't I be alone. There have been a lot of postings about strangers, acquaintances and co-workers being ignorant, but when a family member asks the infamous question, it really throws you for a loop.
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The person who made a comment to me was not really being stupid or ignorant, but more insensitive than anything. First, I will provide you with a little back story. One time back in 1994, when I was taking my first run at this dialysis thing, I had decided I was just plain mentally tired of the whole dialysis process. The physical component is draining, but the real strength we have lies in the fact that we are able to walk through those clinic doors (hopefully with our heads held high) three times a week. Anyway, on the night that I felt completely drained, I called up my grandmother and asked if I could stay with her. She made me scrambled eggs (post dialysis munchies), I got a good night sleep and felt refreshed in the morning. That day, I got the call for the transplant. Part of me associates this good luck with my grandmother, who is very important to me. Fast forward to this past summer. I am now married to a wonderful woman who helps me through the rough times. Unfortunately, she was in another city because her dear uncle passed away, so I was alone. His death affected me, so I knew I was going to have one of those psychologically draining nights. I decided to call my grandmother and ask if I could come over after dialysis.
I was talking to my mom about this and she asked me why I was being such a wuss and why couldn't I be alone. There have been a lot of postings about strangers, acquaintances and co-workers being ignorant, but when a family member asks the infamous question, it really throws you for a loop.
:) Mmmmm Grandma.
My grandmother was the most remarkable person. She made me feel so good.
Just being near her had a very calming effect on me. She died when Jenna was
almost 2. I would love to be with her. I have her in my heart, but I wish I could
go to her house and feel that comfort! So I am with you! Enjoy it whenever you
can and especially when you need it!
Your mom is probably a little jealous. You don't ask her for that comfort, and
she may feel inadequate or something...? I don't know. Family can basically
suck! They say things that boggle the mind!
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if i cramp real bad and complain a few nurses like to say...you couldn't handle having a baby', then they do the breathing exercises in my face. at first i didnt like it, but now i just joke along with em.
actually, lamaz breathing helps with the pain of cramps until you can get enough fluid to relieve them.
EDITED: Fixed quote tag error - Bajanne, Moderator
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Did I post the dentist statement already? I am at the dentist office Wednesday and he pops into the room and asks:
Have you your transplant yet?" I have been seen here for three months at the most. Transplant, yeah sure. Ran right down to Walmart last month and got me one! Uh huh! Sure did! Big Dummy!
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Someone once said to me "You must be well up the list by now!"
Two of my friends met once, and one said to the other, "how's Bill I haven't seen him for ages" and he said, "haven't you heard Bill Died......
but he's alright now!"
What he should have said was Bill had to be taken back by the crash team ???
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My nurse said to me "why don't you have a kidney already?" I was like "huh??" and I said, "I have been waiting since 2001" and she said, "Really that long? Well you should have had one by now!" and I said to her, "Do you realize how long the waiting list is? Plus I have had a transplant before so that means I have more antibodies and am harder to match this time around! Plus I have had a lot of blood trasfusions that also raise my antibodies!"
Turns out she thought I was not even complete the transplant workup because she hadn't heard about me doing it. Why would she know? I did that back in 2001 when I was on PD and not HD so there is no reason she would have known me. It seems she assumed that when she first met me in 2005 that was when I first "got sick" ::) And just because another guy in the HD unit (Al) got his transplant only a month after being put on the list that she thought it was THAT FAST!! She didn't understand first transplants get called faster than anyone waiting for their 2nd or third .. plus he was a different blood type than I.
But it is just what bugs me is the nurse seemed to assume it was something I was doing that was the reason for me not getting a transplant as of yet... Made me want to scream! !
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Just found this discussion, so thought I would add my 2 cents. I had to sign Levi out at the school's office
to take him to dialysis, and the secretary said, well Can't you do that to him while he is in class?? yeah, right!!
Let's just roll up the machine while he's in P.E.!! No problem right??? And maybe next time he has to have a surgical
procedure we will just have it in the class down the hall. Some people are just clueless.
Sherri :twocents;
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Just found this discussion, so thought I would add my 2 cents. I had to sign Levi out at the school's office
to take him to dialysis, and the secretary said, well Can't you do that to him while he is in class?? yeah, right!!
Let's just roll up the machine while he's in P.E.!! No problem right??? And maybe next time he has to have a surgical
procedure we will just have it in the class down the hall. Some people are just clueless.
Sherri :twocents;
Yeah, show and tell. Good idea.
Idiot. and she has a JOB! :banghead;
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How about chocolate? I'm not allowed to have it, nor nuts. Invariably I'll hear from people,
oh, what a wonderful way to lose weight!! Gosh, you are so lucky!!!! Excuse me? For not
being able to be happy with chocolate, I am happy?? Get a life! I WANT MY CHOCOLATE
(dark, of course)!!!!!
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I ran into a friends wife the other day and she asked me if I was going to a tanning salon I said no and my complextion was from the drugs they give me because of dialysis.. Well she goes "oh what a bonus" ::)
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When I tell some nurses I had a kidney transplant, I get this response.. "Which kidney, or was it both?" Im like, wtf are you talking about? I HAD A TRANSPLANT, they put a NEW KIDNEY in me. ::)
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I would have to say that its when people that don't have a clue what dialysis is are total experts on a dialysis diet.
Umm do you think you should be eating that?
I wouldn't think you can have bread.
Fruit, I thought fruit would near kill ya :-\ :banghead;
Kim
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I was very fortunate to have a friend's husband donate his kidney to me. When I told people that I was getting a kidney from someone I knew, many asked me "Oh, what is he dying of?"
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Well, here in the Caribbean, people (older people) feel there is a bush for every ailment. Just put some leaves in boiling water and make a tea. That will help your kidney. Just Saturday at the funeral of a lady who was on dialysis, the lady I sat next to rolled off a list of herbs that would help me. And of course, she ended with the now unavoidable "And you must drink a lot of water. That is your problem. Drink a lot of water and it will help your kidneys" (!!!!!!!!!!!!!!!!!!!!!!!)
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I was very fortunate to have a friend's husband donate his kidney to me. When I told people that I was getting a kidney from someone I knew, many asked me "Oh, what is he dying of?"
Too funny Kelli :rofl; Maybe they thought you were going to 'bump' him off! >:D
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Well, here in the Caribbean, people (older people) feel there is a bush for every ailment. Just put some leaves in boiling water and make a tea. That will help your kidney. Just Saturday at the funeral of a lady who was on dialysis, the lady I sat next to rolled off a list of herbs that would help me. And of course, she ended with the now unavoidable "And you must drink a lot of water. That is your problem. Drink a lot of water and it will help your kidneys" (!!!!!!!!!!!!!!!!!!!!!!!)
Some people are just sooo clueless arent they? :-\
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You are now an angel in heaven looking down at the water suggestion lady saying "Now look where I am!"
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My sister in an argument with me one day, actually said, "well at least I haven't wasted the last 4 years of my life lying around pretending to be sick."
Or at a camping trip, one friend commented on how nice it must be to not have to go pee every few hours.
Or one friend said I was lucky I didn't have to go to work everyday.
And the same friend said how nice it must be to have my parents help me out financially instead of having to go to work and make money myself.
Yet, another friend told me it must be nice to be able to blame my weight on medication.
My goodness, am I ever surrounded by ignorant people.
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I think ignorance is catching! :bump; :bump; :bump;
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I think ignorance is catching! :bump; :bump; :bump;
And some times it's us kidney patients, as well.
:beer1;
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True, true, true
The patient next to me one day, commented on the bottle of Diet Coke, sitting on my table (while in all honesty was my fiances). He said, you know, you aren't allowed to have Diet Coke on the renal diet. Meanwhile, I have nicknamed him Pizzaman because every shift he comes up with two huge pieces of pizza from the cafeteria. I said, "Thanks for your concern, but I am pretty sure we shouldn't have pizza either."
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actually the pizza is worse. 1 slice of pizza has 198 mg of phos and 171 of potassium. 12oz (standard can) of cola 36 phos and 7.2 potassium. i really think the problem is the cola is empty calories, nothing usefull for anyone, my neph goes ballistic if he even thinks i'm drinking coke, but then i'm not supposed to eat pizza either. too much calcium. (slightly off topic, but oh well,)
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In Canada, where I live, the federal government requires the provinces to provide all 'medically necessary' services free of charge if they want to receive federal funding for healthcare. But at the provincial level, where the influence of right-wing forces is especially strong because the governments are smaller and less powerful than the federal authority, there is a campaign to define more and more services as "not medically necessary" in order to privatize them. Then the capitalists are happy, since they can't stand such a giant cash cow as the demand for healtcare to go unexploited as a source of their private profit, no matter how many patients would be denied any healthcare at all under a for-profit system.
While I was on dialysis, a nurse from Alberta, one of the most right-wing provinces which had defined away the largest number of services as "not medically necessary," said to me: "I think it's a good idea that patients in Alberta now have to pay for part of their healthcare costs, since that teaches them to take better care of their health." Well, what would have been the use of charging us dialysis patients $20 per treatment? Nothing anyone could do could save us from these treatments! And most of us, myself included, could not have done anything to prevent our renal failure, no matter how high the cash incentive or how long in advance we had had the warning! Even the typical doctor has to say to the patient: "You may feel fine now, but the tests show that in five years you'll be on dialysis." If he can't do anything for any amount of money to prevent that, how can the patients?
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"I think it's a good idea that patients in Alberta now have to pay for part of their healthcare costs, since that teaches them to take better care of their health."
This is so typical of someone that is healthy, I am 100% sure that that same person would not utter those words if she or a sibling or a child of hers needs dialysis, I am so freaking sick and tired of people that have no experience in what they speak get on the highest soapbox and make others listen to their crap
Kim :-\
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While I was on dialysis, a nurse from Alberta, one of the most right-wing provinces which had defined away the largest number of services as "not medically necessary," said to me: "I think it's a good idea that patients in Alberta now have to pay for part of their healthcare costs, since that teaches them to take better care of their health." Well, what would have been the use of charging us dialysis patients $20 per treatment? Nothing anyone could do could save us from these treatments!
Evidently the person cannot see the difference between those with chronic conditions that must be treated to live and those that people do to abuse the system, such as emergency room treatment without actually being an emergency.
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My friends were trying to plan my wedding shower. I explained to them that it would have to be on a Sunday as i have to travel 3 hrs to get there and i have dialysis on Saturday. One of them could not get a babysitter on the Sunday and she actually said that i could just miss dialysis for a weekend as it would not kill me. so she expects ,me to go from Thursday until Tuesday with no dialysis. It may not kill me but I would be so miserable that I might have to kill her. ;D
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My friends were trying to plan my wedding shower. I explained to them that it would have to be on a Sunday as i have to travel 3 hrs to get there and i have dialysis on Saturday. One of them could not get a babysitter on the Sunday and she actually said that i could just miss dialysis for a weekend as it would not kill me. so she expects ,me to go from Thursday until Tuesday with no dialysis. It may not kill me but I would be so miserable that I might have to kill her. ;D
"My friends ......" I think you may want to change that description or at least take one off the list. She doesn't sound like a friend to me. It's your shower and they should be thinking about YOU !!!
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My friends were trying to plan my wedding shower. I explained to them that it would have to be on a Sunday as i have to travel 3 hrs to get there and i have dialysis on Saturday. One of them could not get a babysitter on the Sunday and she actually said that i could just miss dialysis for a weekend as it would not kill me. so she expects ,me to go from Thursday until Tuesday with no dialysis. It may not kill me but I would be so miserable that I might have to kill her. ;D
I have a lot of friends that just dont undestand how dialysis works, and how important it is.......Ignorant ppl!!
I have had a few ignornant comments also... i got told it was "A shame that i was sick, and i was a waste" ... some ppl are so kind!! :thumbdown;
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"If you're on the list now, does that mean you still have to go to dialysis?"
I managed not to burst out laughing when I heard this, but it was an effort!
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It just amazes me at some of the things you all have heard.
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i overheard the dietitian telling a patients wife, "if he eats any cheese his phosphorus will never go down" i just kept walking, my ears rolled over and hid!
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i ran into a friend who, when i told i was still doing dialysis told me, "Why havent you gotten a transplant yet? I heard that people die without a kidney" Grrrrrrrrrrrrr, goes to show the ignorance of the uninformed >:(
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After i had my transplant, my friends got together and threw me a party at out local pub. Sorta a fundraiser/congratulations party. A lot of the regulars were there and one of the woman actually said to me. " Oh, this party is for you, I thought you died, I am sure glad to see you still alive" Why thank you so much for your kind words, you drunken slag!!!!!!!!!
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I try to cut people some slack if their ignorant questions aren't rude or thoughtless, as I realize that if you or a loved one are not living with a particular disease you would have no clue about the details of treatments, syptoms, diet, etc.
HOWEVER.... since my transplant, I cannot believe how many people ask me if my "other" kidney still works OK. They are assuming that only one of my kidneys have failed. This is usually after I have stated that my sister donated one of her kidneys, and that you can live with one kidney, so if my "other" kidney was still working OK, why would I need hers? ??? ??? ???
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i ran into a friend who, when i told i was still doing dialysis told me, "Why havent you gotten a transplant yet? I heard that people die without a kidney" Grrrrrrrrrrrrr, goes to show the ignorance of the uninformed >:(
You can probably thank the National Kidney Foundation for that.
The ends justify the means? :-\
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"I did not know you were under stress." a coworker.
Sheez, if they only knew.
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My mom's a bit of a bimbo. Whenever I go to visit my parents she will ask me if I'd like something to drink. Sometimes I'll say yes and have a small tea with her. THEN she'll bring out the cheese and whole grain crackers, or ask me if I'd like a sandwich made with whole grain bread, butter, cheese and some nice salty deli turkey. She'll put out a bowl of peanuts to snack on (my mom's one of these luncheon ladies who does nothing but specialize in hospitality).
I'll kid with her and say, "what, are you in a hurry to get rid of me?"
I also work with a bimbo who can't believe that I don't drink anything. She'll say something like "you need to drink or you'll get dehydrated" or "well, if you don't drink, how do you pee?" or "what do you mean you have 3 kidneys?"
Yes, I also get the "nice tan, have you been away?" Ever notice it's only in my face? My hands and neck are pasty white?
And finally, I did get (and only one time) the old "when are we expecting the little one?". Well, I'm only 5'2", 48 kgs but I have a little dialysis belly. I'm so glad it was the village loudmouth who asked because I was able to say, "I'm not pregnant you twit, it's from my dialysis"... :clap;
I have to admit, though, I do enjoy being able to go for a nice flight or long road trip without a pee break!!
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I've been asked a few times: Did you get bitten by a shark? (My old graft is in a big loop and looks like a shark bite!)
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Yesterday I ran into an acquaintance who had recently heard that Jenna finally got a transplant.
Her question was, "So does she still have to do dialysis?"
Uhhh no, they kicked her out and won't let her back for now!
:urcrazy;
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One of my techs is pregnant, and she's having a hard time of it. She was talking to a couple of us about it the other day, and asked us "Do you know what it feels like to wake up every morning and you don't feel bad, but you just don't feel right either?" The two of us listening both paused, grinned, and answered a resounding "YES" in unison. She realized what she had said and who she had said it too, and then we all started to laugh. ;D
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Besides my closest family and friends and my boss at work, nobody is aware of my condition. I'm so glad I don't have to put up with such moronic blather. :D
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I don't know if this is ignorant, but a girl at work approached me today and asked if my kidneys are okay. During a very brief conversation (if you can even call it that) she said to me that if something were ever to happen to her she would be interested in giving me one of her kidneys. She was trying to converse onward and mentioned a friend of hers who is diabetic, and her commitment of one of her kidneys to him.
I really didn't even want to talk about it, she came at me out of nowhere. All I could say was that if you are interested to learn about donating I could print something off for you. Her intentions were there but I suspect she hasn't a clue.
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I have a list here.....
1) Just barely a week after my husband was released from the hospital after his aorta surgery (auto accident), who I thought was my best friend says "Oh we were just talking about it here that 'Mike and Anita have it made' 'Mike and Anita have it made' ".....Ok I almost lost my husband in a tragic accident and we have it made...eff her and the canoe she sailed on.......we are friends again though since many things got worked out.....but proir to we really had some verbal knockdowns and dragdowns and I have the emails to prove it...lol...
2) I happen to be talking to one "friend" on the phone and she knows about my depression problem and she asks me smiling very sweetly "What are you doing this weekend?" "Kim, I have a lot of errands to do", she said smiling very sweetly "Well you need to do something fun".......You stupid lady, I don't need that cr*polla from you.......she is the world's biggest idiot and she is too pollyanna for my tastes...sorry Charlie Lady.......
3) When I was teaching and had to fill in one class, one of the kids stole my cell phone, then in the teacher's lounge I happen to mention it to one teacher who I thought was alright and she goes "Didn't your mother ever teach you to not to put your purse out in the open?", OK Lady, for all you know I could have been raised in an orphanage or pinballed around in foster homes not that it is any of your buzwa to even begin with........now she is suppose to know better than to talk about people's mothers since we have to teach the children not to do that....
Don't worry I will think of more.....
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Rob's family steams me when it comes to talking about his condition. His mother is still confused as to what he can eat. I gave her a list of foods he can't eat last year and she still asks me if he still can't eat cheese. Duh, no he can't.
So for Easter this year, she was all distraught because Rob can't eat ham. She was thinking of having a ham and turkey breast. Ok, lady, you know ham is your son's favorite food, why the hell would you make one, have everyone eat it and then give him turkey? I also told her he can't have potatoes, that plain white rice is the best. She gets brown rice and makes a huge batch of mashed potatoes. I could see if there were a ton of people at her house for the holidays, but it's just them, us and his sister, her hubby and son. Not a heck of a lot of people. I think they can handle not having ham & potatoes for one freaking day!
His Dad actually had the gall to say to us that we have no idea what his mother goes through trying to plan a meal for him, it's very hard on her. Are you freaking kidding me? I said to him, try being the one with the disease, then get back to us. I said you have no idea what your son is going through. Planning a meal every now and then is nothing compared to being the one with it or living with it.
It's a wonder why they don't like me very much :rofl;
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Stupid, inconsiderate and downright hostile things people have said to me: (and the responses
I wish I had given)
"I pray for you!"
(Really? It doesn't seem to be working. Are you sure you didn't piss off God somehow?)
(on seeing my access) Are you a heroin addict?
(No, I'm high on life, and epogen!)
You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
(Really? and to think, I could have escaped 5 years of dialysis if I had just spent $10 at my corner drugstore!)
(said to me by someone sitting next to me at a meeting)Er, your disease isn't contagious, is it?
(It is, but only when when I'm careless around others with my Swiss Army knife)
I wish I could give you one of my kidneys!
(I wish I could give you some of my brain)
You know, you could actually buy yourself a kidney in India!
(I wish I could buy you a conscience in the USA)
You know (the name of some celebrity) had bad Kidneys...
(Oh good! I'm a cause celeb! What color is our ribbon?)
Larry from Long Island
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You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
(Really? and to think, I could have escaped 5 years of dialysis if I had just spent $10 at my corner drugstore!)
I really hate this too. I have several acquaintances that constantly send me information on homeopathic cures and are offended when I explain that herbs can't regenerate organs. :urcrazy;
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Today the lab tech asked if Dani's anemia was from her not getting enough Iron in her diet wtf, when I told her it's from kidney failure she put her hand on Dani's and said "you poor thing you sure are going through alot." :banghead; I know she was trying to be nice but it's none of her business why Dani has anemia.
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I feel you lola... when people used to ask me as a child, it was annoying... I grew used to it realizing they are just interested in whats going on is all. :grouphug;
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Even though I was diagnosed in the early 90's I am really just starting the hard part of this long journey. I haven't been placed on food restrictions yet, nor fluid. I've just been instructed on moderation, etc. In the last few weeks, since being told I had to get my fistula and since getting my fistula, I've had a couple of people (friends) say "I knew you had kidney problems, but I thought you were over it. You don't sound/look sick". Who goes to a specialist for 15 years with just a "kidney infection"? I guess I should get used to it. :)
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Since my transplant, I have had many people ask "do you still have to do dialysis?" To which I tell them that dialysis is not necessary if a person has a functioning kidney.
I also have been asked "does your other kidney still work?" I remind them that a person can live on one kidney and if either one of my kidneys worked I would not have needed one of my sister's kidneys. Why would I leave her with one just so I could have two?
Most of the time I don't feel these are ignorant questions, it's just that people have NO IDEA what kidneys do or much about kidney disease. I am more than happy to enlighten them!
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Since my transplant, I have had many people ask "do you still have to do dialysis?" To which I tell them that dialysis is not necessary if a person has a functioning kidney.
I also have been asked "does your other kidney still work?" I remind them that a person can live on one kidney and if either one of my kidneys worked I would not have needed one of my sister's kidneys. Why would I leave her with one just so I could have two?
Most of the time I don't feel these are ignorant questions, it's just that people have NO IDEA what kidneys do or much about kidney disease. I am more than happy to enlighten them!
I agree with you Jill... I get these same questions (among others), and even from NURSES, geesh. I agree, we need to enlighten them and educate them. :)
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There are things known
and things unknown
and in between
are the doors
Jim Morrison
open ONE every day of your life
DC
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There are things known
and things unknown
and in between
are the doors
Jim Morrison
open ONE every day of your life
DC
I hear ya, man. I hear ya.
8)
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You should really try (the name of some stupid home remedy or over the counter product). It works wonders!
I get asked this about my son's ADHD all the time. Damn it pisses me off!
The winner on the kidney disease, though was from my boss (who's normally pretty on top of it, he just says the first thing that comes to his mind)...a woman who works for our company but lives out of state was just diagnosed last weekend with kidney failure, guess who got to tell the boss? The one who knows the most about it, of course. His first question was: "Is she going to die?" ??? I sure wish I could revisit that conversation and really educate him about it, but I was just so taken aback that all I could say is, "no, she can do dialysis". :banghead;
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I had passed out about 2 and a half years ago from super low blood sugar. I woke up to find 3 EMT's standing over me. One of them, my husband later informed me, had started yelling him and blaming HIM for my blood sugar crashing! Yes, my husband can telepathically remove the sugar from my blood! He likes to see me passed out on the floor! :sarcasm;
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I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".
Adam
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I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".
Adam
:rofl; Maybe she thought you said scuba diving?
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I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".
Adam
WTF?? I'm going to wondering about that all day, thanks a lot, Adam!! LOL.
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I can't remember if I've mentioned this elsewhere, but I think the most "ignorant" thing someone has said to me was one time when I went to a convenience store to get some stuff. The cashier asked me how I was doing, and I said I was feeling kind of bad because I had a rough dialysis treatment (I was in-centre at the time). She looked straight at me, with a perfectly normal expression on her face, and said "I could never do dialysis, I hate water" WTF, I still have NO clue where she came up with that. Hmmm, "underwater dialysis".
Adam
Yeah, I've been trying to figure out what word related to water sounds like dialysis since yesterday. I got nothing! ???
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Naturally when it was too late, I figured I should have asked her what she meant by that comment. I haven't seen her at the store since, so that may forever be a mystery.
Adam
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So this is sad. I am sitting in the chair (at dialysis) and I overhear a conversation next me between a new patient and a nurse. The nurse is inquiring about an intention to receive a transplant which the lady replies, "well I'm not sure, I thought dialysis would make me better."
I realize that this may have been a sudden onset but did nobody discuss anything with her in the hospital, surely she had to spend a day or so there before winding up in a unit.
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on another site, a message board i had been frquenting since 2001, after diagnosis and treatment had begun for me, i was sharing my experience when certain individuals decided to inform me that my condition was due to wrong thinking.
another, rather bent person told me that he was going to put a curse on me, and he still continues to post a countdown to Oct 31, when, he says his 'curse' will be activated.
crazy people say crazy things.
love
~LL~
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I've tried to chalk up all the frustrating comments to either a lack of knowledge about kidneys or a desire to want to say something positive and just stumbling. The sheer volume of people praying for me, adding me to prayer lists, sending me prayer blankets, etc. is, I realize, something they CAN do, and human nature is one (generally) of wanting to reach out and do something. So I set aside my personal religious beliefs, thank them and tell them "it must be working, I'm still here." Then I size 'em up and wonder how healthy their kidney might be...hehehehehehe
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LL did you tell them you had already been cursed with dialysis?
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So this is sad. I am sitting in the chair (at dialysis) and I overhear a conversation next me between a new patient and a nurse. The nurse is inquiring about an intention to receive a transplant which the lady replies, "well I'm not sure, I thought dialysis would make me better."
I realize that this may have been a sudden onset but did nobody discuss anything with her in the hospital, surely she had to spend a day or so there before winding up in a unit.
There is an amazing lack of education when you're in the hospital for kidney failure (maybe other things too, but ESRD is my experience). I got sent home with a PD cath a year ago and NO education on how to care for it. On the other hand, if she had acute failure, it's possible that her kidney function would resume, but not BECAUSE of dialysis, just because that's the way acute failure works sometimes.
I agree, though, it's sad that she was allowed to begin dialysis with that impression.
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on another site, a message board i had been frquenting since 2001, after diagnosis and treatment had begun for me, i was sharing my experience when certain individuals decided to inform me that my condition was due to wrong thinking.
another, rather bent person told me that he was going to put a curse on me, and he still continues to post a countdown to Oct 31, when, he says his 'curse' will be activated.
crazy people say crazy things.
love
~LL~
Do you mind telling what message board this is? >:D
Donna :bandance;
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I found out I had kidney disease in 2001. They said I would eventually need dialysis. i told everyone at work. About six months later, one co-worker asked me "Are you sure you have kidney failure? You look so good and you haven't started dialysis." I wish she could come to the center and sit with me while I lie there motionless with two needles in my arm.
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
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Hate people like that.
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I know polite society wouldn't condone this- but first I would have told him to stfu- then gf himself, then he was going to hell for being a pecker!! geeze!
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
*Ding ding ding* I think we've got a winner folks, that has got to be the most IGNORANT thing anyone can ever say >:( I am sorry you even had to listen to this ignorant person Highlite, geeeeze, some people :thumbdown;
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I know polite society wouldn't condone this- but first I would have told him to stfu- then gf himself, then he was going to hell for being a pecker!! geeze!
:bow; :rofl; :rofl; :rofl;
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
Ummm, if that is true to what he said, then why is here there in the care of people. He could just pray it away couldn't he? :rofl;
That sucks donkey balls that there are people like that, Idiotic moronic asswipes!
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This week I went to my Bunko group. One of my friends mentioned she had to re-new her drivers license here in California and she told us she decided against signing a donor card because she's afraid they will "jump the gun" and take organs prematurely. She said she can't figure out why anybody would want to sign a donor card. She knows I'm on a kidney donor transplant list. I just smiled and said,"I guess some people feel that way." How do you educate someone like that?
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
Oh geeeez..................LOLOLOL What a Fruit Loop!! I would have played with his head a little and told him every time he cut his toenails or cut his hair he wasn't a "complete" person and was going to hell too. I would have told him every time he farts that's his eternal soul leaving him or something just as stupid.
Donna :bandance;
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you have to wonder where some people get their ideas from, sometimes.
other times, all you can do is shake your head and walk away.
the problem is that 'healthy' people don't give much thought to illness and they don't even want to hear about it, most of the time. some will even react violently, if you mention your condition, and try to make themselves feel better by implying that sick people are being punished for some transgressions or 'sins.' that kind of stipidity doesn't seem too healthy, to me, at least, mentally healthy.
people are pretty darn weird.
love
~LL~
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
Oh geeeez..................LOLOLOL What a Fruit Loop!! I would have played with his head a little and told him every time he cut his toenails or cut his hair he wasn't a "complete" person and was going to hell too. I would have told him every time he farts that's his eternal soul leaving him or something just as stupid.
Donna :bandance;
I found out from this guy's exwife (who visited him quite often at the nursing home ) that this guy was so nutty that even the CHURCH he went to and was part of chose to "disown" him and kick his lousy ass out of the congregation. I really couldn't stop laughing when I heard that piece of news..... I don't think that'll get him any closer to Heaven..... :P Oh wait...that's right....God loves him.....Maybe he'll just pray his ungrateful ass there...... :P
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South Park movies comes to mind when you said that. Depends if your familiar with South Park though where Kenny is on his way to Heaven and near the top is a button to push for accessto Heaven. He pushes it and get's ACCESS DENIED! and is taken to Hell.
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
Wow...thats just total idiocy. That guy must not realize the concept of being buried or cremated, and the fact that you can't take anything with you. :banghead; :urcrazy;
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I've had some awful things said to me about dialysis....but the winner of them all was from a man who I met while I was visiting an old friend in a nursing home. I had already been transplanted and had previously been in the hospital with rejection. This man was the roommate of the friend I was visiting. When he found out that I had received a kidney from a friend of mine, he insisted on telling me that I was bound to go straight to HELL because I had taken the soul of another person when I got her kidney. AND THEN....he proceeded to tell me that the friend who donated would never be able to make it to Heaven because she was "no longer complete." He said that even the process of dialyzing was a way for doctors to make more money and what I should've done was pray about it because God can fix all things!!! I've never been so insulted in my life!!!
Wow...thats just total idiocy. That guy must not realize the concept of being buried or cremated, and the fact that you can't take anything with you. :banghead; :urcrazy;
Excellent point Josh *ahem* Patton ;) :2thumbsup;
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People just need to be a little more sensitive. Not everyone has the same views. :rant; I could spend all day ranting about people.
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Well, I just got back from the eye doctor's and I've got 2 of 'em for ya! Please excuse any typos as my eyes are VERY dilated! I had an assistant tell me about an herbal drink that stops kidney failuer!! Puh-leez! This was my first time to see this doctor and when he first walked in and read my chart, he said "but you're way too young to be diabetic and too young to be in kidney failure." Lord, what a visit! :o
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:rofl; I love that "your way too young..." I like to say stick it up you *&^!!! If i'm too young, take it back away from me, dipshyt. :)
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Oh geeeze, how sad is that, for a doctor to tell you something so stupid, what a moron :thumbdown;
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I was at my nieces Baptism last weekend and sitting talking to some friends of my sister-in-laws. One of her friends husband decided to come and quiz me on my health. This man would be in his 50's and until this time I thought him to be intelligent. He has known from the start that I was on dialysis but had no clue about PD, so I tried to educate him. Hard task, some people have no clue about medical procedures.
He went on with his verbal diarrhea about how I am too young for all this..... then he asked me if I never get offered a kidney how long was I expected to live? He assumed I was given a time frame of dying. What the? I said I had no plans to leaving the planet just yet. MORON :boxing;
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Isnt it sad (yet funny) that someone who thinks they know it all really doesnt know Jack Schitt? Hey, thanks to Chris, i now know i know Jack Schitt, lol, :2thumbsup;
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I was at my nieces Baptism last weekend and sitting talking to some friends of my sister-in-laws. One of her friends husband decided to come and quiz me on my health. This man would be in his 50's and until this time I thought him to be intelligent. He has known from the start that I was on dialysis but had no clue about PD, so I tried to educate him. Hard task, some people have no clue about medical procedures.
He went on with his verbal diarrhea about how I am too young for all this..... then he asked me if I never get offered a kidney how long was I expected to live? He assumed I was given a time frame of dying. What the? I said I had no plans to leaving the planet just yet. MORON :boxing;
To quote Mark Twain..... (with a small change)
"Rumors of my (imminent) demise have been greatly exaggerated."
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Okay, I got a couple of good ones.
After parking in the disabled spot and putting my sign up, some woman had the gull to say to me with a look of disdain, "You don't look handicapped!" As if you can tell by looking!
Another patient thought you could lose body weight through dialysis.
A complete stranger looked at my fistula scars and made a comment in a hushed tone to the person they were with abt thinking I was an IV drug user.
After my last transplant somebody said, "I'm so glad you're cured."
"Here's your sign!" People can be sooooo stupid!
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I was telling Jenna about this thread at dinner and she said people always surprised her about how little they knew about kidney failure. When she was a senior in high school a guy who was visiting from another school saw her fistula on her upper arm and said "Whoaa, what have you been doing to yourself??" She said "Uh, nothing. I am on dialysis," but he had no idea what that was. She attempted to explain it, but it was a pretty awkward moment.
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After parking in the disabled spot and putting my sign up, some woman had the gull to say to me with a look of disdain, "You don't look handicapped!" As if you can tell by looking!
:lol; I have had a handicap sign since I was 15/16, and I have mine for life... so I get looks ALL the time.. old people, staring, making comments... I simply respond "You know, not just old people are handicap." They look at me again, "I don't see one thing wrong with you..", I say "Please, live with my body just 1 day, c'mon.. I bet you will be singing a different tune!!"
::)
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This week I went to my Bunko group. One of my friends mentioned she had to re-new her drivers license here in California and she told us she decided against signing a donor card because she's afraid they will "jump the gun" and take organs prematurely. She said she can't figure out why anybody would want to sign a donor card. She knows I'm on a kidney donor transplant list. I just smiled and said,"I guess some people feel that way." How do you educate someone like that?
My EX husband voiced this belief to me several times in the course of our marriage. I guess since I had only ever had living donor transplants he figured it just didn't matter. He's a jerk AND an idiot, though.
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I get asked alllllll the time how long I have to get a transplant. I tell them 2 to 3 months LOL. They never know I am being a smart a**. Ask a stupid question... get a stupid answer!
The teacher I work with was talking to another coworker of ours. The coworker said she could not believe I was working. The teacher said... oh, she is on dialysis now.... she is all better. WTF??? What a genius!
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He's a jerk AND an idiot, though.
I can relate.
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He's a jerk AND an idiot, though.
I can relate.
Well, this is gonna be me telling on myself but...I never did the one on my license until I was in my mid 20's. I always figured since I was ill they wouldn't be able to use anything anyway. But then after I thought abt it for a while, I decided I was being selfish and even if they only use me for research I should sign the donor card! But I also think my family would've signed the consent anyway!
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Okay this one's kinda funny because of who said it to me!
One Saturday in Spring of 1997 my hubby was working and I was babysitting my oldest niece so I went out to see my dad. I had been on dialysis for abt a year at this point. We decided to go for a drive up to Chinook Pass at Mt. Rainier. As we're getting ready to go out the door my dad looks at me and asks, "Do you need to use the bathroom?" (Now I knew he was asking me if I needed to pee.) I looked at him and said, "That was a STUPID question!" And he just looked at me like he was confused! Then he realized what he had just asked and started :rofl;! I still give him a hard time abt that one! lol
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My father wanted me to go with him to a dinner party one of his neighbours was having. To avoid any embarassment on my part, we asked her what food she would be serving to make sure it was suitable for me. The neighbour was very nice about it and made something different for me - it was just some cold meat and salad as the main course was a chicken in tomato sauce which I can't have (cos of the tomatoes). All was going well at the dinner until the host said to me she had put my food to one side. At this point one of the guests (a middle aged busy body) said to me very aggressively "What's the matter with you, have you got a food allergy?". The conversation in the room stopped dead as some guests knew about me and some did not. I just said "No, I have kidney failure.". Well, you could cut the silence in the room with a knife.
Me and my Dad got out of there pretty sharply after that. I thought it was very rude to demand to know what is wrong with someone in that manner and it put me on the spot as well.
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I was at the hospital today having an abdominal CT scan for some unusual pain that I'm having. The tech asked me if I've had any blood in my urine, and I told him that I don't really pee anymore because I have kidney failure and I'm on dialysis. He then asked me "So, is your actual kidney function OK?" I was like "uh.....no, I'm on dialysis." He seemed kind of embarrassed with himself and he was very kindly asking me things about dialysis and how my treatment is going. An ignorant question ended up turning into a pleasant conversation, and another medical professional learned a little about "our" world.
Adam
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It really shows that the professionals have not done a good job about educating the masses. Almost all of the other chronic diseases, people have at least some idea. But every time the topic dialysis comes up, I have to do the Dialysis 101 crash course for people to understand. "Ohhhhhhh, I didn't know that" is the standard response. The other response, with unbelief "Four hours???!!!!!" and response number three "You need to drink a lot of water. It will flush out your kidney" (you mean it might flush me out of this life).
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OMG, This morning, as Sam was getting ready for work he asked me "do i have to go in today?" and i asked him "do i have to dialyze today" and he said in his sweetest and caring voice "honey, if you want to get better you do" OMG, WTF?? I couldnt help but cry my eyes out, he didnt realize what he said wrong and i had to openly say it, I WILL NEVER GET BETTER, BUT I WILL GET WORSE, THIS IS IT FOR ME, FOR THE REST OF MY LIFE, i know he was just trying to make me feel better and he really didnt know any different (i guess) all he could do was hug me and said, "you have me", and i have to admit, that did make me feel a little better but geeeze, did he think all this time i was actually going to get better some day, ohhhhhh what a way to start my day :banghead;
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Oh, Susie, I am sorry. My husband doesn't get it at all. He thinks I throw up because I ate something spicy. He thinks I can't sleep because maybe I am cold or hot. He doesn't go to the nephs office with me. He has gone to most transplant evaluation visits, but not all. He drops me off for the 6 hours of iron infusions. He just can't handle the truth. He is a good guy and we have spent our lives together. Sometimes he says the dumbest things---like Sam did----and I just want to SCREAM!!!! He says all the time "wish I didn't have to go to work" and I want to say "oh my God, I wish I could!" That is why Vegas was incredible-----nothing had to be explained. Everyone understood!
So go ahead and cry. Then hug Sam when he gets home. He is there and isn't going anywhere. Even those who love us will never really fully understand and probably because they love us, they just want us to be well. Wish we could go get lunch together and just hang out today! Love ya!
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Thank you so much Paris, i love you :cuddle;
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Our spouses mean well, don't they. They are our closest allies and yet, even they don't completely understand what it is to have kidney disease. I often need to remind my husband I would much rather be able to go to work than be on disability. If only I could have my old life back. If only...
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Well said Sunny ........ If only....
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When people learn that I don't make urine, they (sometimes) say something along the lines of: "Wow! I'm jealous! It must be nice to not have to take time out of your day every couple of hours to pee!" Um...yeah....it's absolutely wonderful getting stuck in the arm 3x/week as a trade off. :sarcasm;
My mom said, as I was drinking from my 1 liter bottle: "I can't believe you drink so much and don't pee. It's amazing!" Yeah, it's just amazing to collect the fluids in organs and tissue and blood as opposed to my bladder where I can expel it easily.
Another: "How long will you be on dialysis?" "Until I get a transplant." "How long will that take?" "Well it can be almost any time or never." "How do you live with not knowing?!" Um....pretty much the same way you live with not knowing when your time is up, dummy!"
And my favorite, once again from my mom. (First a bit of history...she's been a drug user, alcoholic, smoker, has had kidney stones a lot, and has had Hepatitis B, among other health and psychological issues): "Well if I can't donate to you when the time comes, I still want to do a donation. I want to donate my kidney to someone!" I know her intentions are good, but I've tried telling her repeatedly that with her issues, she won't be a suitable donor and they won't take it. She doesn't believe me and tells me at least once a week that she wants to donate.
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One more I forgot.
I went to the doctor about a month ago because I had bronchitis. While I was there the nurse came over and started cuffing up my left arm for BP. I told her to stop, that she couldn't use it because I have a fistula. She looked at me dumbly, as she continued to strap my arm and asked "What's a fistula?" :urcrazy;
I got her to stop before she started applying pressure, but damn!
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One more I forgot.
I went to the doctor about a month ago because I had bronchitis. While I was there the nurse came over and started cuffing up my left arm for BP. I told her to stop, that she couldn't use it because I have a fistula. She looked at me dumbly, as she continued to strap my arm and asked "What's a fistula?" :urcrazy;
I got her to stop before she started applying pressure, but damn!
Now, Sheila, you must be kidding. Is that nurse for real?
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I wish I could say I was kidding. The only (and not very good) defense I can come up with on that one is that she works for a doctor's office with just family practitioners. But even then she should have known what a fistula was....
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Are you sure she was a nurse? I encounter many people in doctors'
office doing inverviews or taking my vitals who act like Bryman School
rejects.
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Here is a good one!!
The neph who goes to my husband's clinic-
(niether one of us like any of the nephs in
this group, but we are captured) was making
his rounds, went to Les's chair, How Are You??
B.S, when my hubby told him he just got done
painting our kitchen, hall and living/ding room
The Dr looked at him and said "I never heard of
a dialysis patient being able to paint" HEL-LOOO!!! :banghead; :banghead;
this guy is a Dr, and instead of saying that's great,
you are doing well, etc- it is always a downer.
I don't see him, but would love to be able to tell him
about thoseof you who work out, teach, ride bikes, etc
I think he needs an awakening
Anne
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OMG, This morning, as Sam was getting ready for work he asked me "do i have to go in today?" and i asked him "do i have to dialyze today" and he said in his sweetest and caring voice "honey, if you want to get better you do" OMG, WTF?? I couldnt help but cry my eyes out, he didnt realize what he said wrong and i had to openly say it, I WILL NEVER GET BETTER, BUT I WILL GET WORSE, THIS IS IT FOR ME, FOR THE REST OF MY LIFE, i know he was just trying to make me feel better and he really didnt know any different (i guess) all he could do was hug me and said, "you have me", and i have to admit, that did make me feel a little better but geeeze, did he think all this time i was actually going to get better some day, ohhhhhh what a way to start my day :banghead;
I got a "I hope you get well soon." today from a woman whose husband had been on PD for years before he died. I thought about you, Nina, while I was thanking her for her very kind, totally ludicrous thought!
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I got the "So if you get a transplant your done, right? You're cured?" question last week. I wanted so badley to say "YES!!"...and mean it.
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I got the "So if you get a transplant your done, right? You're cured?" question last week. I wanted so badley to say "YES!!"...and mean it.
I get that too with having a pancreas transplant also. Cured from diabetes, yeah right!
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That would be the perfect question to be able to say "yes" to.
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Here is the very worst I've had, and it's from another kidney patient.
"You're lucky to get kidney disease so young, you can get a transplant. They won't let me have one because I'm eighty five."
That's nice to hear from someone who's been relatively healthy their whole life.
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Here is the very worst I've had, and it's from another kidney patient.
"You're lucky to get kidney disease so young, you can get a transplant. They won't let me have one because I'm eighty five."
That's nice to hear from someone who's been relatively healthy their whole life.
Uggggghhhhhh! :banghead; :banghead; :banghead; :boxing;
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I got the "So if you get a transplant your done, right? You're cured?" question last week. I wanted so badley to say "YES!!"...and mean it.
I get that too with having a pancreas transplant also. Cured from diabetes, yeah right!
I said sorry ::)
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When people learn that I don't make urine, they (sometimes) say something along the lines of: "Wow! I'm jealous! It must be nice to not have to take time out of your day every couple of hours to pee!"
I made a kinda joke with the people I'm close to abt that one by saying stuff like, "Go for me too!" When they announce they are going to the bathroom.
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Okay, I am sick to death of this...
When people, (yes even extended family members who know my kidneys failed when I was 7), find out I've 4 transplant of the same organ. The ask, "Why so many?" And also, "What didn't they work?"
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Went driving out of town with my sister every 15/20 miles she asked if i want to stop to use the bathroom, to pee. I said no i'm fine, remember my kidney's don't work. O' ok.
30min prior to our destination she pops the question, well when do you pee?
Baby sis I love you and know you love me, but brother only pees three times a week, monday, wednesday, and friday, how about you? :rofl;
watching a football game at a friends house, another guy asked me if i wanted a beer. :boxing;
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To be totally honest I usually get this....
Them: "How are you? How are your kidneys?"
Me: "Oh, I'm good. Actually, I just got my first fistu...
Them: "Oh hey!! When did you get here? I was hoping you would make it! <<<<walking away towards someone else>>>>
Me: sigh thanks for asking... :-\
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List... there's a list??
Oh I am getting senile.
Anyway, now that Jenna has her transplant people say "No more stress huh?"
Right. Of course, there is a lot less stress. But as has been said before, this kidney business is life-long, and most people have no idea.
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My uncle came up with this one the other night..."so since your mom's was a 3/6 antigen match and lasted 20 years, does that mean this 6/6 antigen match will last twice that?" Oh, if only...
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My husband gave me a newspaper article about how to clean in short 15 minute segments. "Isn't this really helpful and a good idea?" He could tell he upset me; I got very quiet. Was he saying I can't keep up with the housework? That I am becoming lazy? That I should be doing more? I think people just don't know how to handle someone with a life long disease. Even those closest to us. People just keep saying and doing dumb things. If nothing else, I have learned what to ask someone who is ill and then to really listen to their answer.
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Baby sis I love you and know you love me, but brother only pees three times a week, monday, wednesday, and friday, how about you?
:rofl; :rofl; :rofl;
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I love bill engvall - he is a comeidan whose line is "here's your sign" referring to people who say stupid stuff. here are a few dumbass things people have said to me
new medical student doing my interview a feww months ago after i told her i didn't have a job - "god that must be so hard", and after that she said that i must live in government housing since i woudnt be able to afford the rent elsewhere..i wanted to hit her so bad. and then she said..you must get food stamps and other kind of help because you don't work.
when i told a friend of mine a while ago thtat i was getting unemployment she said "i wish i was getting paid not to work"
new med students had never seen a fistula before and because i am so young they think they can say things and do things and i'll let them get away with it. The doctor was checking the thrill and the studetn came over and asked to feel it. I said yes and after seh did she ran out into the hallway and got several other med students and told me to come feel it. Never go to the hospital in June when all the med students come out of the woods. iI have a ton more but would be here all nite.
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The one that has always gotten to me but doesn't really apply to me now.
Whenever I would get a transplant people, and again even relatives who know how long I've had this, say, "Oh so you're cured!" Um, "No, transplantation is just another treatment! There is no cure."
My paternal grandmother tells me stuff like, "Oh you should just pray for God to heal your kidneys instead of asking for good matched transplant" I'm like, "Grandma, my kidneys are shriveled up and if God wanted me to be cured, I think he would've done it when I was 7!"
I love her but she drives me nuts with that one.
Also this one elderly man who used to dialyze at my center got conned into this fruit juice program that promised to cure his kidney disease! I don't remember what company or what fruit but he was totally suckered into it. If only there was some miracle fruit out there!
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Today I and my family got an email saying our situation is FAKE WTF. This guy is pissed because I won't send him a piture of Otto and Dani so he can do some "special" prayers and is flagging our craigslist plee and any other plees we write. How do I know this person isn't gonna do something weired with Dani's picture? But to call my family fake and our situation fake them is some fighting words
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One of the ladies who's making dinner for my family this week found out that this is my third transplant said, "gee, I hope this one takes for you." I didn't have the heart to tell her that the first one lasted 20 years, but I got it when I was 7.
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One of the ladies who's making dinner for my family this week found out that this is my third transplant said, "gee, I hope this one takes for you." I didn't have the heart to tell her that the first one lasted 20 years, but I got it when I was 7.
I know that one too! When people find out I've had 4 transplants they always assume they didn't work. I had my first one when I was 8 and it lasted eight years! Which at the time was better than I could ever hope for with the limited medications available in 1980.
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Okay, I don't know if I'd really call this ignorant but....
I belong to a few other forums and whenever I talk abt my health or my numerous family problems people always accuse me of just trying to get attention. A few have even accused me of making stuff up abt my health and family problems. It may seen unreal but it's very real for me! I wish it weren't but it is.
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One of the ladies who's making dinner for my family this week found out that this is my third transplant said, "gee, I hope this one takes for you." I didn't have the heart to tell her that the first one lasted 20 years, but I got it when I was 7.
I know that one too! When people find out I've had 4 transplants they always assume they didn't work. I had my first one when I was 8 and it lasted eight years! Which at the time was better than I could ever hope for with the limited medications available in 1980.
This goes right back to the fact that people that don't have CKD/ESRD truly believe that a transplant is the cure, when in fact it's not.
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:rofl; This is hilarious I only got through a few but I will be reading this for a long time.
I think the stupidest thing I had some one tell me was said to me after I told them I was severely depressed and did not want to leave my room because a negative reaction to a medication had caused dark spots all over my face his reaction was "I know how you feel I hate for people to see my feet"
I wanted to say you put socks on your feet everyday you friggin moron! I can't put a sock on my head!
FYI to everyone - never tell anyone "I know how you feel" especially when you are incredibly self absorbed and dense! :rant;
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My friend recently had face lift surgery to look good. Now she tells me "I know how you must feel having to live with kidney disease." YAH RIGHT!
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Question from the RN about to start my stress echo-cardiagram, after doing a medical history - "Do you feel good and healthy today?" Let's see - I just gave you the details of my health - a brittle diabetic dialysis patient with gastroparesis, anemia, and an out of control PTH, and told you that the test I am doing is so I can stay on the transplant list. Does that sound healthy to you?
She wanted to know if I felt up to doing the test - which I did. But what a way to word it!
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As I mentioned in another thread, I had to be taken to the ER on Sunday because I collapsed at church. One of the few things I can remember clearly about the trip to the hospital was when the paramedic was hooking the portable heart monitor up to me, and he had to put one of the probes right next to my catheter. He asked what the catheter was for and I said hemodialysis. I mentioned at some point after that I do my dialysis at home, and he asked if it was "the kind of dialysis where you put fluid into your belly and drain it out". Uh, no I just said I do HEMO dialysis and the catheter in my CHEST that you put the probe next to is for HEMO dialysis. If I hadn't been kind of drifting in and out I probably would have actually said that to him in a sarcastic, nasty way, so it's probably a good thing I couldn't. Then when they got me into the ER, a nurse was taking notes from the paramedics that brought me in, and they said "He does his dialysis at home six days a week (I did tell them it was hemodialysis, and they eventually got it), and I heard the nurse say as they continued wheeling me to my room, "Yeah, he's on CAPD". DOH!
Adam
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when my fellow teachers complain about having to pee so much during state testing
I think give me your urine-----please
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"So... you still doing dialysis? How much longer are they gonna have you do that?"
"Uh... as long as I want to live. Unless, you'd like to give me a kidney."
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"So... you still doing dialysis? How much longer are they gonna have you do that?"
"Uh... as long as I want to live. Unless, you'd like to give me a kidney."
That's the best answer I can think of! :rofl; Good job!
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"Oh. you have been on dialysis that long. You look good."
How am I supposed to look? :basket:
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I keep getting "You don't look like you are on dialysis." Gee, thanks. What is that supposed to look like? Is there a costume? A dress code, maybe?
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I keep getting "You don't look like you are on dialysis." Gee, thanks. What is that supposed to look like? Is there a costume? A dress code, maybe?
I have a shirt that says "I left my dialysis technician costume at home", but for people like that we need to have one that says "I left my dialysis PATIENT costume at home"
Adam
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I was wondering if there is a costume or a button I am supposed to be wearing? Or am I supposed to look like hell all of the time?
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I was wondering if there is a costume or a button I am supposed to be wearing?
Kit, I can't believe you've been on dialysis all this time and don't have your uniform yet. I've been told the hat is quite stylish, and the shoes aren't that hard to walk in. I'm surprised your centre hooks you up without it.
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What an outfit and I do not have it yet, after all this time?! Oh yes, it was the one with those needles and tape attached to my arm three days a week! I have had that outfit!
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What an outfit and I do not have it yet, after all this time?! Oh yes, it was the one with those needles and tape attached to my arm three days a week! I have had that outfit!
Kit, maybe you should wear that costume to a social function sometime, that MIGHT shut them up!
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One of my favourites ..i have several..is my perfectly healthy best friend telling me ..oh you dont know how tired i am , another is ..you are so lucky not to have to go to work. The last one she likes to say alot is ..oh im so broke , i got this bill and that bill to pay , like my bills are free! She has a partner so 2 full time wages coming in , free mobile phone and free use of a car (all paid for including petrol) You just cant win with some folk!
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One of my favourites ..i have several..is my perfectly healthy best friend telling me ..oh you dont know how tired i am , another is ..you are so lucky not to have to go to work. The last one she likes to say alot is ..oh im so broke , i got this bill and that bill to pay , like my bills are free! She has a partner so 2 full time wages coming in , free mobile phone and free use of a car (all paid for including petrol) You just cant win with some folk!
We must have the same friend! She's constantly complaining about being broke, yet her job pays for everything--car, car insurance, cell phone, gas, satellite radio! And she and her husband work full-time, with high salaries, and spend money like it's going out of style! I don't want to hear about your stupid house alarm and cable bills! If you can't afford 'em, don't get 'em! Try paying my medical bills, then you can whine about it. :banghead;
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I was wondering if there is a costume or a button I am supposed to be wearing?
Kit, I can't believe you've been on dialysis all this time and don't have your uniform yet. I've been told the hat is quite stylish, and the shoes aren't that hard to walk in. I'm surprised your centre hooks you up without it.
:rofl; :clap;
You are all crazy! and I love it :rofl;
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I keep getting "You don't look like you are on dialysis." Gee, thanks. What is that supposed to look like? Is there a costume? A dress code, maybe?
I get that one all the time!! Someone said to me a few weeks ago "You don't look like you're sick, maybe it's just a stage you're going through" WHAT?????? A stage????
Even my doctor tells me I look good. He told me I had nice healthy color the other day again. What am I supposed to look like on dialysis??
Donna
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:banghead; My NEPH filled out the paper work so I could obtain a Handi-cap sticker so I would not have to walk very far because of my fatguie, I don't drive hardly anymore because of it. My wife pulls in I slowly drag my weak body out, an walk towards the store only to hear an elderly woman scream out her window at me those are for people that really need them A**hole! I just waved.
EDITED: Fixed smiley tag error-kitkatz,moderator
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People say to me all the time "Wow, you look great!" Especially when they haven't seen me in a long time.
That's because over the past year, since my return to dialysis, I've lost over 20 pounds. (I've lost 120 since my largest size, too. A lot of that lost in my trials with illness.)
It just cracks me up that I've been losing weight because I'm freakin' sick, and people think I look "good". Kind of a messed up culture.
~Steve
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If someone asks me why I look so tired, I would love to give them an "I am sick" button.
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I had someone ask me how often I had to go to the dialysis center and for how long. I told her 3 days a week and I was on for 3 hours each time. She said "Oh - well, that's not bad. At least it's not like it's some big major thing." We were on the phone and I just wish she could have seen my face. I was so shocked I don't think I spoke for a full 2 to 3 minutes after she said that. :o
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I had someone ask me how often I had to go to the dialysis center and for how long. I told her 3 days a week and I was on for 3 hours each time. She said "Oh - well, that's not bad. At least it's not like it's some big major thing." We were on the phone and I just wish she could have seen my face. I was so shocked I don't think I spoke for a full 2 to 3 minutes after she said that. :o
WTF????
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It just cracks me up that I've been losing weight because I'm freakin' sick, and people think I look "good". Kind of a messed up culture.
I got that too, I lost like four dress sizes, but hhheeelllooo, I am really sick here! But people think that ??? :urcrazy; And know that I have stabilized they say I don't look sick.... kk I think you should make that shirt for us all.
Edited: Fixed quote tag - okarol/admin
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I was wondering if there is a costume or a button I am supposed to be wearing? Or am I supposed to look like hell all of the time?
Oh yeah, didn't you know? We're all supposed to be sick, constantly vomiting, helpless little creatures whose entire lives revolve around dialysis, or if we're not there, we're supposed to be lying in bed waiting for death to call upon us, or don't you watch Lifetime? :sarcasm;
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Rob's mother pissed me off last Sunday. We had dinner at her house, along with his siser and her family. After dinner, Rob went into the family room and took a nap. She turns to me and says, "Every time he comes here he takes a nap. It would be nice for him not to nap once in a while." I said, you try having diabetes and kidney failure, then do dialysis 5 days a week, work full time M-F waking up at 5, come home at 4 and in bed at 10 or 11. She mumbled something and went to do the dishes. PUUUULEASE! :rant;
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Skyedogrocks,
Next time he can make it easier on his mom & just take his nap at home. How happy would she be then?
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My husband (who has decided to divorce me after 24 years of marriage and CKD) keeps telling me that I don't look sick. What he is specifically looking for I don't know. ??? I also think he is trying to stall until I get my transplant. I have a living donor :yahoo; I keep telling him that this is only another form of treatment, but. . .
NolaGail
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NolaGail,
He's leaving you aftr 24 years?
What a jerk. You're probably better off without him. Just don't let him leave you high and dry financially.
I'm glad you don't look sick. More power to you.
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Today we went to the transplant clinic to find out about getting Otto a fistula and he ran into someone he know's and when we explaind why he was there the guy say's "well at least you have Dialysis I hear it's not so bad" :boxing; WTF!!!!!!!
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Today we went to the transplant clinic to find out about getting Otto a fistula and he ran into someone he know's and when we explaind why he was there the guy say's "well at least you have Dialysis I hear it's not so bad" :boxing; WTF!!!!!!!
Yeah, not so bad as:
Going before a firing squad
Getting kicked in the nuts 3 times a week
Being chased by blood sucking beasts through the gates of hell
Losing your entire family to the plague
Getting swallowed by a whale
See lola, you just need to put things in perspective! :urcrazy;
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OH silly me I guess DIALYSIS isn't so bad :sarcasm; Thanks (hehehe)
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:sir ken; just today I was telling my social worker and the director of the unit about this web site
the director said,"Why would anyone hate dialysis?"
Gee, I don't know........1. needles
2. sore bottom
3. blood
4. vomit
5. cramps
6. scales
7. thirst
8. diarrhea
9. lab results
10. directors of units
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:banghead; :banghead; :banghead;
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And that's when I push them into a chair and tape them down to be stuck and have to sit there for 3 to 5 hours. Then tell them you can't move much due to the needles.
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And you have to do it for three days a week for the rest of your life unless someone loves you enough to
give you a kidney or the right person dies. Your director deserves a kick in the ass for asinine statements
like that.
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How about print these replies and show it to them :rofl;
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That is why this site was created. Normal healthy people think we should be "thankful" to be alive. Well, that works for about a month! Then death doesn't look so bad!!
We need dialysis, but we can still HATE it.
To me.... acceptance is the last step before death. I still don't accept this life of dialysis!
Okay, now I need to go take a blood pressure pill!
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
Hmm wouldn't :sir ken; to throw them off and then :Kit n Stik; :Kit n Stik; :Kit n Stik; :Kit n Stik; work better. :rofl; :rofl;
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
It really isn't, according to my sister and stepdad. I mean, I get to sit in a (gross, sweaty Naugahyde) chair for 4 hours and watch (basic) cable TV for four hours a day, 2x a week and I get SSI to do nothing (except get jammed with needles and listen to this one attention whore named Angie who's old enough to be my mother (but acts like she's about 4) sit there laughing, screaming, shrieking, making herself sneeze and carrying on like she's a little child as she presses her buzzer for every stinking thing under the sun). Oh, and we can't forget the humiliating childish pamhlets they hand us featuring cute little cartoony pictures and smiling old people who supposedly love dialysis. Oh yeah, and the humiliating actiities they use to try and make us perfectly compliant little angels: Contests for perfect attendance, where if you go everytime for 3 months, you get a pillcase or something, contests for perfect compliance to the renal diet, where you get some disgusting renal-friendly food in an ugly cheap basket if you follow their diet totally, Like a basket of spaghetti (no sauce, too much potassium), gum, graham crackers, and white bread from the local Aldi's (which I could buy for about $4 if I wanted it.) is going to make me give up the foods I love...Mmmm hmmm, sure whatever you say, freaks.
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
Oh, and we can't forget the humiliating childish pamhlets they hand us featuring cute little cartoony pictures and smiling old people who supposedly love dialysis. Oh yeah, and the humiliating actiities they use to try and make us perfectly compliant little angels: Contests for perfect attendance,
I really hated that crap they had and given out. I told the dietician and Social Worker there what I thought about it. A couple people started clapping when I told them what I thought. Then there was the stupid smiley or frown face stickers for lab results. Give me the fricken lab values in real numbers, not kiddie crap!
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we get to play phos. bingo at my unit
Oh, what fun......It sucks and reminds me of teaching children.
coloring contest........ oh yeah....can't wait to do that
when we "play" Bingo the social worker calls out----What number do you need?"
If you want us to play a stupid game at least follow the rules
it was humorous the first time we played Bingo
patients were bingoing all the time
they were marking any pancakes not B pancakes, any coke not G coke
the social worker was upset that she had to explain how to play Bingo
well, it's been a long, long time since some of those patients played Bingo
we have dollars for good phos. numbers, I have yet to receive one
there is no interest in it during my treatment
and the prizes you get are crap
:rant;
make us feel like helpless children and you will always see results-------NOT
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I hate it when I get a cup of coffee at work and someone asks me, "Can you drink coffee"? I just want to kill them... :Kit n Stik;
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Can you have that?
Yes I can. I can eat anything I want to eat, thank you. (Asshole!) I am an adult thank you very much! :sarcasm;
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
Oh, and we can't forget the humiliating childish pamhlets they hand us featuring cute little cartoony pictures and smiling old people who supposedly love dialysis. Oh yeah, and the humiliating actiities they use to try and make us perfectly compliant little angels: Contests for perfect attendance,
I really hated that crap they had and given out. I told the dietician and Social Worker there what I thought about it. A couple people started clapping when I told them what I thought. Then there was the stupid smiley or frown face stickers for lab results. Give me the fricken lab values in real numbers, not kiddie crap!
When my home nurse gave me my annual Davita (Duh-vita) Christmas present, which was a pair of blue and yellow SOCKS with a li'l yellow Duh-vita star on them, I looked at her and said "Thank you, but I just have to say it, these things are absolutely retarded!" I was expecting her to just shrug her shoulders and change the subject or something, but she looked straight at me and said "Oh geeze you are not lying, those things are pathetic." :banghead;
Adam
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If one person walks up to me and says "Oh dialysis is not so bad." I swear :Kit n Stik; :Kit n Stik; :sir ken; :sir ken;
Oh, and we can't forget the humiliating childish pamhlets they hand us featuring cute little cartoony pictures and smiling old people who supposedly love dialysis. Oh yeah, and the humiliating actiities they use to try and make us perfectly compliant little angels: Contests for perfect attendance,
I really hated that crap they had and given out. I told the dietician and Social Worker there what I thought about it. A couple people started clapping when I told them what I thought. Then there was the stupid smiley or frown face stickers for lab results. Give me the fricken lab values in real numbers, not kiddie crap!
When my home nurse gave me my annual Davita (Duh-vita) Christmas present, which was a pair of blue and yellow SOCKS with a li'l yellow Duh-vita star on them, I looked at her and said "Thank you, but I just have to say it, these things are absolutely retarded!" I was expecting her to just shrug her shoulders and change the subject or something, but she looked straight at me and said "Oh geeze you are not lying, those things are pathetic." Oh, and lets not forget the "slogan" at the top of those stupid little "comic" things. "The first day of the rest of your life" Oh yeah, rub it in that a lot of us are going to be tethered to a bloody machine for the REST OF OUR LIVES" :banghead;
Adam
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Pardon my last post being messed up. I hit the quote tab instead of the edit tab. :oops;
Adam
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This wasn't said, but done, and I've gotta share.
Last May, I went to a convention for dialysis patients, and they had door prizes throughout the day, and of course the vendors had all sorts of freebies. One of the door prize baskets had two 32 ounce water bottles in it! One of the freebies given away by the company that makes Hectorol were 24 ounce water bottles. What were these people thinking?? :Kit n Stik; Oh yeah, they weren't! :banghead;
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Why does a cop always ask
"Do you know why I pulled you over?"
Well duuhhhh :Kit n Stik; Could it be I was speeding or did you just pull me over to say Hi! and wanted some small chit chat. :rofl;
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Why does a cop always ask
"Do you know why I pulled you over?"
Well duuhhhh :Kit n Stik; Could it be I was speeding or did you just pull me over to say Hi! and wanted some small chit chat. :rofl;
Chris, you are a comedian ;D
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Why does a cop always ask
"Do you know why I pulled you over?"
Well duuhhhh :Kit n Stik; Could it be I was speeding or did you just pull me over to say Hi! and wanted some small chit chat. :rofl;
I asked my husband (a cop) this. He gave a fairly long answer, but essentially, it's because sometimes you've only been pulled over for a minor traffic violation, but you might say something about those outstanding warrants against you. ;)
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Or if you're really stupid you might say "Because of the person in my trunk? uh, heh heh heh"
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:rofl; :rofl; :rofl;
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I told a nurse that my son was accepted at Colorado College of the Minds, she wanted to know if he would be performing at the circus......
Why hellooooo, of course, we are sending our son to an Ivy League college to perform at a circus...
He wants to play for A&M, so now I have to change all those Aggie jokes.
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I was with a group of ten women last week and one of them starts spouting off about how we have all been so lucky to be in good health at our age with no
major bouts of health problems. I felt like saying,"Speak for yourself. Did you forget about my battle with kidney disease?" Apparently she : A) did forget; or
B) didn't think my health issues were a major problem. After all, I look healthy, don't I? What do I have to do to make people realize? I thought I already had
made it perfectly clear to this group of women just how difficult my health has been. But when they see you looking O.K. for so long and if I don't talk about it
every time (Which I loathe doing), then people perceive me as being healthy and just like them. I suppose I could look on the bright side and be grateful I am
so good at covering for myself.
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Sunny and let me say now, I love your duck. I have a similar comment. I worked with a teacher for three years and we became great friends.
She left to teach in Willis and came back after 7 years. When she saw me she wanted to know if I was over "my little kidney problem". She knew all about my disease ??? Nope, I still have my little kidney problem, only it is worse.
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A colleague (male originally from Corsica) asked me once if I it was possible to have sex while hooked up to dialysis. The question was so stupid and actually incomprehensible to me that I thought he'd made a mistake in his english since it was his second language. So I asked him to repeat the question in french and sure enough there it was again. Moronic or what.
I also knew two kids who were very very different in their reactions to seeing me hooked up and we had talked about the purpose for dialysis. They were both about 7 at the time. One boy said "that would be great saving all the time you spend peeing" and the other (who probably should have been evaluated for depression) said quietly "if I had to do that I'd just kill myself".
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"if I had to do that I'd just kill myself".
Out of the mouths of babes come the truth. Cute story.
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"if I had to do that I'd just kill myself".
Out of the mouths of babes come the truth. Cute story.
Actually, I would be pretty concerned about a 7 year old saying this.
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Exactly right. I was concerned and am serious about him being quite depressed about his own life. He's now about 33 but I've lost touch although I've heard he's doing OK.
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Maybe I read it differently. What I meant was that they say what they are feeling when they are feeling it. I don't know if I would have immediately jumped to "depression" if this kid said it to me. I'm sure the thoughts going through his/her mind while looking at the machine and seeing everything she was going through hit him/her as serious and that he/she would never want to live that way. I hope I didn't offend by laughing! Definitely not my intension! :)
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Oh Kellyt please don't think I took any offense at all. Nothing is really simple is it? He was an odd kid, very serious and lots of trouble in his home life but without knowing all that he could easily have made a remark without it meaning anything or he could have heard some grown up say that, again not meaning it literally. I just thought it interesting the contrast between the two reactions and of course it shows how even very young we're all so different. I promise that if ever I take offense at anything said here I'll follow up and sort it out and I hope (I KNOW some will for sure) that others will do the same if ever I say anything that sounds offensive or whacky or whatever. I'm glad you found it cute.
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Thanks girl. I never want to offend. Life's to short, right? :beer1;
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I'm not offended, either, Kelly! I guess having graduated from college just a couple of years ago with a major in psychology got the better of me. I immediately started thinking about what must this child have heard at home? What kinds of coping skills is he/she being taught or not taught? That kind of thing. That's part of the problem with this kind of forum, though, you can't read voice inflections.
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An adult asked me how long would I have to wait on the transplant list. I said the average for me (0+ blood type) would be 5 to 7 years. They said "What?? You can't just get one?"
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An adult asked me how long would I have to wait on the transplant list. I said the average for me (0+ blood type) would be 5 to 7 years. They said "What?? You can't just get one?"
Sometimes you just wanna :Kit n Stik;
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Seems to be my life lately. :Kit n Stik; :Kit n Stik;
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An adult asked me how long would I have to wait on the transplant list. I said the average for me (0+ blood type) would be 5 to 7 years. They said "What?? You can't just get one?"
"Well, Costco has discontinued them and like a fool I let my Sams card expire. What do you suggest I do now, all-knowing Oz?"
"Well, I was going to with my tax refund, but I really want an HD Plasma TV."
" Oh yeah! Would you be a doll and pick one up for me on your way home from work tomorrow?" "Thanks.....dumbass!"
oh yeah... include :Kit n Stik; with any of the above responses.
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I forgot about this one....
This was more than a few years ago. I think my transplant was only 5 or 6 years old. I was married at the time and we had some people over to the house. A friend brought another friend over. Someone asked about my transplant and this friend of a friend said something to the effect that if your kidneys failed then it was God's will you should die.....it was some crazy mess like that. I don't even remember specifically what she said. Needless to say I never saw her again after that night. >:D
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Oh man! First, my jaw would have dropped, then, I would have told her to leave my house. The gall she had! :boxing; :Kit n Stik;
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Brightsky that takes the kidney (I mean the cake). WTF. I would have wanted to know if her kid had CKD would she feel the same way? What a twit.
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I forgot about this one....
This was more than a few years ago. I think my transplant was only 5 or 6 years old. I was married at the time and we had some people over to the house. A friend brought another friend over. Someone asked about my transplant and this friend of a friend said something to the effect that if your kidneys failed then it was God's will you should die.....it was some crazy mess like that. I don't even remember specifically what she said. Needless to say I never saw her again after that night. >:D
ding, ding, ding....WE HAVE A WINNER! We have finally heard the absolute stupidest thing ever said to a CKD patient! :o
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I just know someone will top it.
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I just know someone will top it.
I can not top it but I may be able to equal it-----
I had 4 misscarriages before we found out what was wrong...a fellow teacher remarked that God knows who will make good natural parents..
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OMG that is horrible, that person needed a good smack! :boxing;
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If God wants people to die when he lets their kidneys fail, perhaps he also wants them to starve to death when he doesn't put food in their mouths and chew it for them.
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OMG! I can't think of anything else to say, but OMG! :Kit n Stik;
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Twirl, that is absolutly horrible! And so wrong!
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I can not top it but I may be able to equal it-----
I had 4 misscarriages before we found out what was wrong...a fellow teacher remarked that God knows who will make good natural parents..
twirl...I think that about tops it. Geez...how insensitive can a person be.
Ever see that movie Two Weeks Notice? I swear in that movie she tells her boss "Before you speak you should probably check with me first." She says that to him right after he said something really stupid. :rofl;
EDITED - Corrected quote error - Bajanne, Moderator
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I can not top it but I may be able to equal it-----
I had 4 misscarriages before we found out what was wrong...a fellow teacher remarked that God knows who will make good natural parents..
twirl...I think that about tops it. Geez...how insensitive can a person be.
Ever see that movie Two Weeks Notice? I swear in that movie she tells her boss "Before you speak you should probably check with me first." She says that to him right after he said something really stupid. :rofl;
That was a cute movie. I believe she said that to him after he congratulated the large woman on being pregnant! I think Huge Grant is adorable.
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That reminds me of something my brother said to me a few months ago. He said something about how we should just get rid of medicine and let nature go back to natural selection.
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Please don't let him get to you. That's a silly and hurtful thing to say. Truth is that even though our bodies are flawed and seriously interfered with by kidney disease, our characters can become very strong indeed and we can develop the ability to feel for other people and be more compassionate. Its not the cards you're dealt that counts, it's how you play them. Having said that Laura, I'm so sorry that you're having to face all this and at such a young age too. Come here and complain about whatever hurts or bugs you so at least you don't have to feel like you're carrying the burden alone.
:Kit n Stik; That's for your brother. And so is this :grouphug; because I suspect he's really quite worried and sad but doesn't know how to show it due to his own immaturity.
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Too bad your brother's kidneys don't fail. I'd love to hear what he says then!
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I forgot about this one....
This was more than a few years ago. I think my transplant was only 5 or 6 years old. I was married at the time and we had some people over to the house. A friend brought another friend over. Someone asked about my transplant and this friend of a friend said something to the effect that if your kidneys failed then it was God's will you should die.....it was some crazy mess like that. I don't even remember specifically what she said. Needless to say I never saw her again after that night. >:D
I would politely explain to her what *I* believe about God's desire for me to live, since he provided scientists/doctors with the ideas to invent dialysis and the ability to perform transplants, then I would have just as politely and calmly invited to get the H*LL out of my house and never darken my doorstep again. DAMN!
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I like KT's response. :) Right on the money!
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Oh, here is a favorite.....Can't believe a friend asked this. I told him I haven't peed in 5 yrs.
He asked....Do you still have a penis? ? Duh....it shriveled up and fell off! ! ! What the heck do u think ! !! If he wasn't twice my size I would of smacked him. >:D
:rofl; :rofl; :rofl; Do you still have a penis? Was he serious?? :rofl; :rofl; :rofl; This one definitely takes the cake!
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lol I have an extra penis coming out of my belly. It's made of rubber, plastic, and titanium. Oh wait, that's just my PD catheter.
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Too bad some people's tongues don't quit.........
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I was at the clinic and told one of the techs I might be working for the city's Water Department...He said and I quote: "Isn't that funny? She can't drink water but she can work with it." This is a jerk who thinks he's God's gift to dialysis patients...
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I was at the clinic and told one of the techs I might be working for the city's Water Department...He said and I quote: "Isn't that funny? She can't drink water but she can work with it." This is a jerk who thinks he's God's gift to dialysis patients...
Funny guy. :sarcasm;
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I was leaving dialysis after treatment today carrying a quilt
a person walked past me and asked if I had to take a blanket to the doctor's office
I said yes--- they stopped letting us cover up with those paper sheets before we are examined
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Monday a resident doctor in the transplant clinic came in to see me first. First thing he did wrong was asked me if I was Chris M and last name. I said no, then he started to look me up on the computer. First thing, wtf, didn't you look up who you are going to see ahead of time and in which room. There where two Chris's with the same last name that day. Anyway he was going over my medical history and type of transplant and he asked me, "So you no longer have diabetes?" WTFF kind of question is that from a person studying medicine? We are all told that we still have diabetes, that we are not cured, but it is managed and under control. So when the real doctor comes in I tell her about this guy and then tell her I don't want to deal with him again till he's an A student and has a clue about the transplantation process. Hate to ask what he thinks about CKF and kidney transplant. Moron is all that comes to mind that day :rant;
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When I first started this crap in September I was on Weight Watchers at work. After my first dialysis I lost like 6 pounds. The instructor went nuts and I got a STAR and a BOOKMARK. I didn't say anything and just took the applause! ;D 8)
I was on Weight Watchers as well. I went back a few weeks into dialysis (had lost over 20lbs from when I was last there). Just imagine that reaction. "You must have been really watching yourself!" Yes, I've been watching my blood go in and out of the machine. ;D And this was after we had just had a discussion about my last few week's events. **sign**
I also enjoyed when I was in a clincial lab class at my school, before everybody in the class knew I had kidney failure. My teacher asked "If there is kidney failure do you think there is more or less urine output?" The general answer was "more?". Ok..kidney FAILURE?
The same teacher asked me if I felt better after my dialysis sessions. I said yes because I normally get close to 10lbs taken off each session. Without hesitation she said "Wow, I where can I sign up? I'd love to lose that much in 4 hours!" Did she not realize I GAIN that much between the sessions?!? :banghead;
~The same teacher's comment when she was in shock of just finding out I had ESRD (I had a drs. appt for my AV fistula and sent her an e-mail saying I wasn't going to be there. She had been sick a few days before, so she responded "OK I hope you feel better". I replied with something along the lines of "I'm not until transplant. Kidney failure." Boy was she waiting to talk to me after class). But anyway, she says "Let me know if you need anything." Umm ok cool, a kidney?!? My mom has answered people like that as well.
~About a month ago I was hanging out with my boyfriend, his friends, and one of his friend's new girlfriend. She saw the bandage on my arm and asked what happened. I casually said "oh I get dialysis." She goes "ooooh!" and smiles. Happiest person I've ever seen to hear that I'm on dialysis. A minute later, she goes "I don't know what dialysis is, please explain!". "OK. Well, my kidneys don't work, so I have dialysis 3x a week to clean my blood." She goes "Oh well I'd give you one of my kidneys, but I don't know how that would work?" I'm wondering if she knows a SURGERY is required? And her boyfriend tells mine a few weeks later: figure out what blood type she is cause my girlfriend (underage, mind you) is serious. And I'm thinkin, I seriously think STUPID would transplant as well. :Kit n Stik;
~I hate the "oh I know so and so is on dialysis too!" Yes, believe it or not, I'm not the only one human on dialysis.
~And also my boyfriend originally saying "if you wouldn't have held your pee so much, you wouldn't have kidney failure." Comes from the man who drank atleast 100 fl ozs of liquid yesterday, held it a good hour, and had to pee so bad he could barely stand up and was screaming oww oww oww as he ran to the bathroom when we arrived at his house. :urcrazy; I may be dating a camel. :rofl;
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When I first started this crap in September I was on Weight Watchers at work. After my first dialysis I lost like 6 pounds. The instructor went nuts and I got a STAR and a BOOKMARK. I didn't say anything and just took the applause! ;D 8)
And I'm thinkin, I seriously think STUPID would transplant as well. :Kit n Stik;
:rofl; :rofl; :rofl;
God I hope not though, but I have turned out OK so far.
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I seriously think STUPID would transplant as well. :Kit n Stik;
there's a question to add to the list of things I'm supposed to ask the coordinator when they call me for a kidney - donor's age, health issues, cause of death, and IQ! Hehehehehehehe.
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:rofl; :rofl; :rofl; :rofl; I am still laughing....I'm not sure which hospital does the stupid transplants but I think I have met her many times.
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This wasn't something ignorant that someone said, but I wanted to share.... This past weekend I attended a family reunion with many relatives I had not seen since being diagnosed with CKF. Many of them were very polite and asked how I was doing, but I could tell they didn't really know what to say to me. I think several were surprised that I was actually walking, talking, and being active. I don't know how many people commented that I had color in my face - I think they all expected me to be bed-ridden, weak, and pale.
Anyhow, people were tiptoeing around me for a while. Then, a bunch of us were preparing to go for a walking/shopping trip and we were waiting for one after the other to visit the restroom. Getting a little restless, I said "Will all you people with functioning kidneys please get a move on?!". You should have seen how many jaws dropped to the ground! After the initial shock, most laughed and then the floodgates of questions opened up. It was actually a good icebreaker.
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That's awesome, cherpep! What a way to let them know not to tiptoe!! :clap;
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The nephrologist today wanted to know what Nocturnal dialysis was. WTF?
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The nephrologist today wanted to know what Nocturnal dialysis was. WTF?
I want some of what he's been smokin!!
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The nephrologist today wanted to know what Nocturnal dialysis was. WTF?
<stare> Did you hit him with your big stick? :Kit n Stik;
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Sounds like he is living in "Nocturnal" Land. Tell him to "wake up".
:rofl;
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:rofl; :rofl; :rofl; :rofl;
Here trying to recover from Jess21's post!!! I am dying with laughter! Among other hilarious things I may be dating a camel
!!!
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Well..he DOES drinks CONSTANTLY and has the bladder the size of pacific ocean. :rofl;
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About a month after my transplant, I noticed how very unhealthy my hair had gotten from all the toxins building up while on dialysis. So 6 weeks after the transplant, I cut it off...went from shoulder length to what it looks like in my avatar. I was at a meeting about five days ago and one of the other women, who had not seen me since about a week post-transplant commented on my haircut. I explained to her why I did it, and her response was, "Yeah, when I color my hair, I have to bleach my hair, and I have to cut it short after that, too."
Yeah, bleaching your hair is exactly like having kidney failure... :sarcasm;
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:rofl; Is she a blonde? Ooops, sorry. You are too! :cuddle;
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Next time tell her to take it easy on the bleach. Apparently it has leached into her brain cells and killed a few off. :rofl; :rofl;
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My favorite question is: What do you call a Doctor who graduated LAST in his medical School class?
The answer is: Unfortunately, Doctor.
Way too often we assume because they have MD after their name, they know something. It's not true. Be skeptical with all docs until they prove themselves to be worthy of the title.
-Devon
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:rofl; Is she a blonde? Ooops, sorry. You are too! :cuddle;
Mine's strawberry blonde, thank you very much! :P
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My favorite question is: What do you call a Doctor who graduated LAST in his medical School class?
The answer is: Unfortunately, Doctor.
Way too often we assume because they have MD after their name, they know something. It's not true. Be skeptical with all docs until they prove themselves to be worthy of the title.
-Devon
I respect a doctor or even a person who, when asked a question will tell me that they do not know rather than make something up.
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Chris,
now you are a parakeet
you keep changing
guess you are really a chameleon
love the changes
always keep them guessing
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My first assumption in approaching any new nephrologist is that the 'M.D.' stands for 'More Dumb.'
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I just called in about six perscriptions to be refilled
the pharmacist assistant asked if I would be teaching this year --- I said no.
She wanted to know it I was over the kidney thing yet..... NO
she may not be a doctor or a pharmacist but she has known me and my problems for years
we should own stock in Kroger Pharmacy
I should ask her has she stopped smoking yet......
at least she has a choice
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OK Speechless....a Pharm Assis asked if you were over the kidney thing yet?????????? Well we know what Ass is means don't we?
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Over the kidney thing?!!?? Over it??? Like this is something you catch like a cold and get over it?!! Someone needs to be smacked on the head! :Kit n Stik; :Kit n Stik; :Kit n Stik;
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oh goodie
are you sending me a smacker stick in the mail :2thumbsup; :Kit n Stik;
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I just called in about six perscriptions to be refilled
the pharmacist assistant asked if I would be teaching this year --- I said no.
She wanted to know it I was over the kidney thing yet..... NO
she may not be a doctor or a pharmacist but she has known me and my problems for years
we should own stock in Kroger Pharmacy
I should ask her has she stopped smoking yet......
at least she has a choice
Looking at the phamacy assistants at our local CVS, I'd be incredibly surprised if they even have a HS diploma yet (because they're so young, no other reason), so I'll give her the benefit of the doubt and say maybe she just doesn't know that you don't "get over" kidney failure...however, she's known you for YEARS?? How long does she think it should take??
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she is not young and is the person who is not medically educated
but
I like her and I'm sure she means the best
just a little stupid thing to say
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Isn't pharmacy assistant at least a vocational certificate? I asked our local girl, she said she doesn't have one because she is a nurse, and that meets the criteria, but the other girl working there was going to school for it. I know it sucks and its frustrating when so many people do not understand the nature of kidney disease and dialysis, but then again why would they? Before my husband got cancer and went on dialysis, I had no idea. Like most people I reckon.
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I always enjoy when you go to the dentist, or eye doctor, etc. and have to fill in the medication section. I usually have to make another column because they usually only have room for 8 or 10 meds. When I turn in the paper, I almost always hear, "do you take all of these medications?" I feel like saying no, I just like to see how many names of medications I can remember off of the top pf my head! >:(
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:rofl; :rofl; :clap;
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I always enjoy when you go to the dentist, or eye doctor, etc. and have to fill in the medication section. I usually have to make another column because they usually only have room for 8 or 10 meds. When I turn in the paper, I almost always hear, "do you take all of these medications?" I feel like saying no, I just like to see how many names of medications I can remember off of the top pf my head! >:(
Wow! 8 or 10? I filled one out for a new dentist this week, and there was room for about four or five! Thankfully the receptionist and hygenist seemed pretty comfortable with my medical history.
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My winner for the week comes from the nuclear medicine tech who just did a para scan on me Wed. And I quote. . .
"This is an easy test. All you have to do is lie still for half an hour."
Mind you, she says this while I'm strapped to a table the width of an ironing board in a stifling hot room. My arms are pinned to my sides with a full body strap that is about 2 feet wide, which makes my hands go numb from lack of circulation, and I've got my neck cranked back into an uncomfortable angle with a neck roll made from a sheet bundled up so that feels like my head is resting on a rock. Right. All I have to do is not move, talk or try to swallow for the next 30 minutes - should be fun!
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try not to swallow
that is like trying not to blink
no, not blinking would be easier
mine for the day
I had a breakfast Jack this morning and my tech asked me if I was going to eat it.
No, I am going to throw it like a frisbe.
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The other night, it was midnight and my dog and I were just getting home from our walk. This lady came running up to us and asked me if I was sick. I said I have kidney failure. Then she said I have this water from work that will make you pee!
:Kit n Stik; :Kit n Stik; :Kit n Stik;
That would be quite the miracle water! She brought me some and I poured it down the drain.
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walking your dog at midnight
where do you live
and I want some of that pee water :clap;
when you think about it - any water will make you pee if you can pee
???
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I always enjoy when you go to the dentist, or eye doctor, etc. and have to fill in the medication section. I usually have to make another column because they usually only have room for 8 or 10 meds. When I turn in the paper, I almost always hear, "do you take all of these medications?" I feel like saying no, I just like to see how many names of medications I can remember off of the top pf my head! >:(
I always put see attachment. I put all my meds on Word and have to update it every so often, same with surgeries, see attached list. How can anyone write so small on some of the spaces given is beyond me.
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if we only took one or two medications would we even need a doc :waving;
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I was at the hospital for my mom who was getting her gallbladder taken out. My mom is my kidney donor and the nurse asked my mom about any prior surgeries. To make a long story short the nurse looked at me and said "OH you need another one? I though those things lasted forever."
I said "Ahhhh only in a perfect world."
It's amazing how many people are so totally unaware concerning kidneys and kidney transplants. We need to get a PR person and get kidney transplant/organ donation as big as breast cancer awareness. ;)
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I agree! :2thumbsup;
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I have always thought that the NKF is partially responsible for the public's misperception that a kidney transplant lasts a lifetime.
Maybe they fear that if people understood that transplants may last for only five or ten years (no way of knowing how long for sure), fewer people might be willing to donate.
Another case where the ends don't justify the means.
8)
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I often tell people that Jenna's kidney may last 2 months or 20 years - there's no way to know. They cannot believe that she will most likely need at least 3 transplants in her lifetime, or more dialysis.
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When one of the men I work with found out I was going on dialysis he said "well, you know we all have an expiration date!"
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When one of the men I work with found out I was going on dialysis he said "well, you know we all have an expiration date!"
So does the ketchup in my fridge, but it's still hanging around, just like me!
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When one of the men I work with found out I was going on dialysis he said "well, you know we all have an expiration date!"
So does the ketchup in my fridge, but it's still hanging around, just like me!
:rofl;
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:yahoo; Thanks... I needed that. I told him I planned to be around for a long time.
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What an ignorant person........... :puke;
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I had to go to a different clinic in Conroe to D b/c of IKE- there was a tech there who would not shut-up - non stop talking, laughing and yelling -he told one of his patients that the patient needed a coke - then he went into this song and dance about how the patient could not have coke but he could - he made a spectacle out of himself--- so I tell him to get a 2 litter coke and shake it and shake it and then :thumbup; of his :sir ken;
well, okay I said it to myself and no one heard me but I wanted to say it
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:Kit n Stik;
Ike Tech twirl
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He deserves more than a kick in his pants. . . I'd sure of said something to his supervisor. Twirl - - how did Alvin fare? My daughter's best friend and her son live there and we've not been able to make contact with her?
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I think if did pretty bad
my daughter in Spring, Texas does not have power yet
it is really more conroe than spring
I do not remembering hearing that Alvin's schools were opened
hope she is fine
too hot here today with no air
it was 94 and rising at 11am today
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No "ignorant things" to post---just really glad to see twirl's posts! We sure missed that majorette in the little outfit! Glad you are ok :cuddle;
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Glad to hear you guys are ok, Twirl. My parent's live in Channelview and I went down to give my dad a hand clearing some downed trees. Luckily their power came back on Wednesday. I have to admit, it was nice coming back home to Dallas on Thursday!
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I love that cat
I don't think Channelview has started school yet...
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So I havent been that well lately, and missed a class. Well, apparently some other ppl missed the class because they fell asleep. Well, I was saying to my friend how I missed it because I was sick and really weak, and this girl goes, in a snotty ass tone, this is colllege, being sick is no excuse to miss a class! Everyone around me just rolled their eyes at her, and I go well I have other issues besides the common cold, I didnt tell her about my kidney disease, but I was just really mad that she would say that. I mean yeah i know missing classes in college isnt good to do, but people with chronic illnesses or whatever sometimes HAVE NO CHOICE, plus what was I gonna do? come in and infect everyone else?? Grr, some ppl lol.
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yes
come in next time and cough all over the bi***
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So I havent been that well lately, and missed a class. Well, apparently some other ppl missed the class because they fell asleep. Well, I was saying to my friend how I missed it because I was sick and really weak, and this girl goes, in a snotty ass tone, this is colllege, being sick is no excuse to miss a class! Everyone around me just rolled their eyes at her, and I go well I have other issues besides the common cold, I didnt tell her about my kidney disease, but I was just really mad that she would say that. I mean yeah i know missing classes in college isnt good to do, but people with chronic illnesses or whatever sometimes HAVE NO CHOICE, plus what was I gonna do? come in and infect everyone else?? Grr, some ppl lol.
Or you could say, "Well, since you feel so strongly about my health and want me to come to class more often, why don't you test to donate a kidney to me?" and watch the bitch squirm like Jell-o. :Kit n Stik;
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good one :yahoo;
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I missed a lot of college classes sick or hung over
2 beers used to make me sick
I still made all A's and B's
most of my professors did not take roll
I knew the professors who did and usually went to their classes
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I like that Kitsune!! :2thumbsup;
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good one :yahoo;
Thanks Twirl, I have a lot of good kidney-related comebacks that I will post after I get done replying to posts. Stay tuned, same dialysis time, same dialysis channel.
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I like that Kitsune!! :2thumbsup;
Thanks Wayne! It's funny that you have have my husband's middle name as your first name too!
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I remember when I was younger and I had to do school physical education (p.e.) and I must've been in 3rd or 4th grade , and I wanted to get out of playing the sport at the time (since it was demanded ) and I had my fistula. So I decided to tell my coach "something happened to my arm! It's making some weird buzzing sound" , as he didn't know I was on dialysis at the time nor what a fistula was , he felt my arm and immediately was like "oh my god! it is buzzing!! get to the nurse right away , I think he might've broken a vein open ..." and in natural fact , he brought me to the nurse himself. The nurse freaked out too (mind you , this is a school nurse) and she was like "we need to call the hospital...." to which I responded , "argh , look it's a fistula its for my dialysis...". I got in trouble. >:D
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I like your spirit!
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you are most definitely my favorite kind of student!
that would have cracked me up
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That is awesome Julian! :2thumbsup;
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"I swear, by all that I've ever found holy, the next person who gives me a pitying look and says, "You're much too young to be this sick," is gonna get smacked."
I hate being told that!!! I am 29 now, but we found my kidney disease when I was 14, so I have heard it thousands of times.
I agree with you....i have heard that from everyone including docs, nurses, dialyis pple etc. People tell me that i'm just too youg to have gone through all the stuff i've gone through. Like i don't all ready know that. Gee thanks. Then pple ask me "how do you do it, i wouldnt' be able to" lol...i just tell them you have to and that its a part of your life and you do what you need to to live. then they give me a sad look and usually walk away. I have also had pple say things like what doesnt kill you makes you stronger or something along those lines. :Kit n Stik; The fact that i am still here and kicking is testimony to that. And for the person asking about tats...i have a medium size one on the lower part of my back and i would rather have a million tats than do dialysis ever again. I remember one time at hemo, they had to stick me 6...yes i said 6 times to get the needles into my arm. Every nurse and tech tried and i remember one of them the last one who tried..nina say from accoss the room...hey let me try i'll get them in. Here i was crying my eyes out and yelling at the nurses to stop and that i just wanted to go home and try again the next day...nina comes bouncing over..i loved her energy dont get me wrong but at this moment i wanted to hit her. and she finally was able to get them in. and then she said see there i got them in. :boxing; it wasnt until about 6months after i started hemo that the director of the unit i was going to said oh by the way there is a cream you can use to numb up the area...I looked at him with disbelief and shook my head. Why didnt they say anything months before....god i hate stupid pple and most of them are in the damn medical field.
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one of the best ones i heard was from my aunt...who told me "just wait until they have an artificial kidney that one day they can use" ummmm dont you knwo what dialysis is???? and then she said that i shoudnt waste my money (yeah like i have any) and that i will one day have to pay for that "artificial kidney" as it will be a trial run not an actual thing covered by insurance... :banghead; :banghead;
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I guess I am lucky to have dumb enough relatives who are not smart enough to say something so stupid like that. ??? :urcrazy;
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The athletic trainer told me: Be sure to drink a lot of water. HAH! I laughed at her.
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I got so mad at my husband
we were locked out of the house
and he had to go
and he peed in the back yard
it was night and we have a big yard
I got mad
it was like he was showing off
I told him if I peed that much I'd be skinny
the never ending pee-er
I do not go that much in a month
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In the hospital...some nurses but all the nurse aides and techs...every two hours with their clipboard...how much have you peed? then most of them would want to know how I felt different, did I feel the need to pee...etc...so for a week when I could talk I had to give ESRD 101 for all..and this was on the nephrology floor.....I am so glad to be home.
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Dumbest thing I have ever heard is "Can't you stop going to dialysis once you feel better?" RIGHT don't we all wish we could stop???? :flower;
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If one more person says "How's your Dad...is he still on dialysis?!" :Kit n Stik; I'm tempted to say "no, he's just decided to die instead" .
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I hate wen family and Friends ask how you are and whats Rog ? You tell theme pkd ckd and its hereditary thy tell it wont happen to you . to late here it is ! I'm OK with the fact I have it just don't try to lessen the fact it is what it is . You cant Chang it with a frays
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People... You have to realize most people don't have health issues and don't have a clue what dialysis really is. Stop getting annoyed with them, they are curious and they wouldn't ask if they didn't care. 99% of the time they are not saying it to be mean. Even the comments of "I wish I could lose six pounds in 4 hours" damn take it is a joke they are certainly not trying to hurt your feelings..
JAy
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Jay 72 what you post is true
but after you have heard and been asked the same questions time after time - it gets old
Did you find a new kidney yet? is one of my favorites :stressed;
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One thing I find annoying is all of the people that know what I am going thru and they ask me "how are you doing?" I tell them "I am feeling better , thank you." Then after that they just stare at me. Like that are waiting for me to say something else. What do they want me to say???
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I understand it gets old, I have been going through this all my life....I am just saying that I never let it bother me because people just don't understand, sometime I find it easier to explain to them what the whole process of getting a transplant is like and what dialysis is and how it works and what it is for and then 9 times out of 10 you don't get the "annoying questions" but just a "how are you doing" or have you moved up on the list" Stuff that just lets me know that the only reason they ask is because they care.
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People... You have to realize most people don't have health issues and don't have a clue what dialysis really is. Stop getting annoyed with them, they are curious and they wouldn't ask if they didn't care. 99% of the time they are not saying it to be mean. Even the comments of "I wish I could lose six pounds in 4 hours" damn take it is a joke they are certainly not trying to hurt your feelings..
JAy
I think you've got the right attitude.
:beer1;
8)
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Sometimes I don't feel like going into the whole rigmarole. That is when I say I am doing good and want to leave it at that. But then they just stare at me like I should be on Discovery Health Channel. 95% of the time I don't mind educating people about dialysis and kidney transplants. There are just some days when I don't want to even think about it.
Off topic....I was sitting in clinic the other day thinking about how hemo dialysis is like prison. There we are all lined up in chairs (cells) unable to go anywhere or do anything. It's can be loud like a prison and there are some disturbed patients in my clinic (like a prison). And the dialysis room is even under lock down and there were two sheriff deputies hanging around....just like a prison.
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I had a family member ask " Do you have to take Dialysis Today?" , like it was some kind of pill. Dont I wish.
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Brightsky: Why is your unit under lock down with sheriffs' deputies hanging around?
Did you shot the sheriff?
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Hehehehe! Well you know how dialysis patients get sometimes.
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Twirl,
I agree with you.........sometimes it just gets freaking OLD! I do realize that most people mean well but again, some people just do not freaking think!!! Like last night, I wanted to stop by a store to get some colas (caffeine) and this old lady said to me, "why don't you just drink water, its better for you" :rofl; I laughed and said, "oh, that does not help me, my kidneys are already shot!" :rofl; :urcrazy;
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TW, now I hope you don't take this the wrong way but colas are not especially good for anyone, although of course small quantities aren't too problematic. Even with my transplant I limited myself to the very occasional cola, like one a month, and not even that really. For us, dialysis patients the phosphorus is the big concern and I consider cola phosphorus a total waste because it's totally empty of food value. No nutritional benefits, no fibre, no nothing, for the phosphorus risk. I've lost bone density already since April and I am more than very careful with my diet. Being in a wheelchair on top of being on dialysis is scary enough for me to never drink cola again.
I know that it's hard to give up things we love to eat or drink but I don't find it that hard if I know that I'm helping to avoid more problems down the road. Please don't take this as a lecture, I don't mean it that way.
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Yes monrein...it's funny but my family and friends don't even drink pepsi or coke around me and if someone asks they will just say it's loaded with phosphorus and leave the people wondering.
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You are a diabetic, right? One more person asks me that, gets :Kit n Stik;
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it would be nice to be more like monrein
but too late now
I had a root beer today ---- 10 ounces
we have been told root beer in okay
but about once a week --- I need a coke------ I buy the 8 ounce cans and think I am doing better, then I drink 3 of them
:stressed;
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monrein, you have more will power than I do - although I don't like pop at all, so that's never been an issue for me. My phos addiction is peanut butter, preferably with chocolate!
Standing in the hospital today, watching the 3rd nurse try and start an IV on my sick, dehydrated aunt, when my uncle pipes up, "Do you have any idea what's its like to have them turn you into a pincushion?" My aunt and MIL, who have both helped me with dialysis just started to laugh at him. ;D
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aaawww Monrein, I did not take that as a lecture but I do love my caffeine "colas" even tho I know I am not suppose to have them.........sometimes I just can't help myself so then I DO "help myself"! :rofl; I am like Twirl, I think I am being good when I buy the 8oz and then like her, I drink 3 of them! :rofl; but thank you Monrein! :cuddle;
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Are you still waiting, for that, organ?
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Are you still waiting, for that, organ?
You must be at the top of the list by now. :Kit n Stik; :Kit n Stik; :boxing;
grrrrrrrrrrrrrrrrrrrrrrr :stressed;
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Wattle
do you know Kola bears eat their mom's poo to build up a resistance the poison in the leafs they eat
and some animals regurgitate to feed their young
makes breast feeding a picnic
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the other day I had a Grey Tea some kind of tea in a bottle that looks like a long neck
it is lemon tea from England and it is my favorite
I had it in a bottle hugger -- you know those things to keep you drink colder longer
this nurse screamed out---"You can not drink beer at dailysis!"
Filpbob would have loved that one.
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BigSteve - I am not sure why the sherifs hang around. I could ask but my guess is that there are a couple of prisoners that need dialysis. The sherifs are usually gone by the end of my session. So it's not like they hang around to walk people to their cars. As far as the unit being locked down....I was thinking that was basic security??? Are no one else's units under lock and key? Maybe my unit is in a bad area?? It's right behind a large police station with lots of warehouses around.
On the other note....I have given up cola. I have taken up drinking sparking water. I still get the carbonation without all the other stuff.
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Brightsky: I can only talk about my old unit. I'm just starting PD now. The unit has a waiting room with
a door to the actual unit. You press a button and get buzzed in. They seem to let anyone in without screening.
However the unit is in a large office complex of four multi-story buildings near the Long Beach, CA airport.
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my unit is locked. however sometimes they prop the door open and sometimes buzz you in without looking to see who is there. after 8am there is a receptionist that handles the door
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Today another worker said " are you on a crazy diet, you never eat anything " .
I wish I could have all the chocolate and potato chips and coke and everything else but I want to live, I'm not crazy.
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Does your penis still work? I say its my kidneys that dont work not my %$#@
I thought you already had dialysis? as if you go to dialysis one time and youre cured
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The worst one came from our center's social worker, who has access to all the patients' records. A few months ago, I was taking a couple of sips of water from the water fountain (What a water fountain is doing in a dialysis center that won't have an ice machine because they think that patients would abuse ice chips that would have to be brought to them by staff anyway I will never know.) and she said, "Be careful! You'll get fluid overloaded if you drink too much water!!" This to a person with no fluid or food restriction. It's like, "Get a clue, lady. I know my own restrictions and I have none. You'd know too if you spent your time reading the charts and doing your job getting to know the patients instead of passing out handouts that you've passed out 100 times and passing out bingo prizes to people who only play bingo to pass the time in this nauseating place who really don't want slipper socks or whatever you found at the dollar store this week."
Man, what a clueless ditz.
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my nep doc was on rounds and he asked me if I needed anything
I said a kidney
he said maybe an Aggie would donate a kidney to me and they would have a better football season ???
I wish Flipbob could comment on this one
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Maybe he meant the donation would give them better karma?
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my nep doc was on rounds and he asked me if I needed anything
I said a kidney
he said maybe an Aggie would donate a kidney to me and they would have a better football season ???
I wish Flipbob could comment on this one
Thats my favorite answer too
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my nep doc was on rounds and he asked me if I needed anything
I said a kidney
he said maybe an Aggie would donate a kidney to me and they would have a better football season ???
I wish Flipbob could comment on this one
:sir ken; that was an awful thing to say coming from a doctor!
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Doctors don't always say the best things.
Once my nephrologist at Sanford told me, "With luck, I'd probably die of something else, and not kidney disease."
I know he meant well, but it was a little startling.
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"Doctors don't always say the best things.
Once my nephrologist at Sanford told me, "With luck, I'd probably die of something else, and not kidney disease."
I know he meant well, but it was a little startling."
This is a long thread, but I'll nominate that quote by Sunny as the most ignorant thing ever said.
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Today at work we were talking about Thanksgiving and I said how great it was to have Otto feeling half way decent and watch him eat, but it was because he skipped D for the day. The next thing I know one of our newer drivers lays into me about him "skipping" and how bad that is, so I asked him if he knew anybody on D and he said "only Otto", 1st I told him how he did not "know" Otto 2nd when he needs D someday and see's what it's like to be hooked up to a machine 5 days a week only to feel like complete sh@# and feel as if someone is beating your head in with a baseball bat because you get a fever with every D then he and I can talk about how bad it is to skip 1 session so you can have a nice Thanks giving with family. :stressed; :stressed; :Kit n Stik;
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BRAVO!
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Today at work we were talking about Thanksgiving and I said how great it was to have Otto feeling half way decent and watch him eat, but it was because he skipped D for the day. The next thing I know one of our newer drivers lays into me about him "skipping" and how bad that is, so I asked him if he knew anybody on D and he said "only Otto", 1st I told him how he did not "know" Otto 2nd when he needs D someday and see's what it's like to be hooked up to a machine 5 days a week only to feel like complete sh@# and feel as if someone is beating your head in with a baseball bat because you get a fever with every D then he and I can talk about how bad it is to skip 1 session so you can have a nice Thanks giving with family. :stressed; :stressed; :Kit n Stik;
Oh, but we dialysis patients are to be perfectly compliant at all times or we are "bad children", didn't you know that?
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Or how about when youre coughing up a lung and have a BAD cold and people say you should still go to dialysis...... rightttt. That wont make things worse!~ lol
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Or how about when youre coughing up a lung and have a BAD cold and people say you should still go to dialysis...... rightttt. That wont make things worse!~ lol
thats fortunate, my husband has to go even if the puke is streaming from his nose.
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I'm skinny as hell and have the "tracks" on my arm from all the needles.. I've been asked more than once if I knew where to score meth.
I just smile and say "From a drug dealer, silly" most people don't have enough brains to pour piss out of a boot. Don't let it get ya down.
Oh BTW.. I was wondering.. Wouldn't eating kidney beans keep you from having to dialyize? *snort bwa ha ha ha* Ahhh People.
Smiles and Hugs (if your a guy it would be one of those shoulder gangsta hugs - Don't want to feel creepy)
Sincerely Mike L
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Knuckle love! Kinda like this :beer1; , but without the beers.
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What happened to your arm?!? I'm tired of this question and the awkward silence with my answer of dialysis. I think I'll come up with a new answer.
Attacked by angry emu. hehe.
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SHARK BITE!
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Yup, that's mine. I give them a serious look and say a freshwater shark got me while I was in Lake Michigan. Hehehehehehhe
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I have a scar that is about 24 inches on my abdomen in a nice V shape. I tell people it was an attack from a land shark. (Really from the cancer.)
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Mikey :cheer:
land shark - that is funny---- did you ever see Jabber Jaws
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I was in an FYE store one day buying a Kotipelto CD right after I had first started D and I saw this little girl look at my arm and whisper to an older woman next to her, "What's wrong with that lady's arm?" and the older woman says to the little girl, "Oh, that lady probably is a junkie, you know someone that shoots drugs into her arn?" Well, I looked over again and said loudly to the woman, "No, I am on dialysis. However, you can change that. Wanna donate a kidney?" Well,that woman turned the color of V8 juice knowing that her nasty, presumptous remark had been heard and that I'd owned her completely in front of her daughter, and she walked out without buying a thing. I didn't see her in the mall for the rest of the day.
I should have borrowed Kitkatz's :Kit n Stik; for the day. Maybe next time.
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good one :yahoo;
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And how many junkies use bandages on their arm after shooting up? ???
People like that need a scene out of the movie Airplane, where everbody's in line to shut the lady up. :2thumbsup; :rofl; :rofl;
:boxing; :Kit n Stik; :boxing; :boxing; :Kit n Stik; :Kit n Stik;
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I didn't have any bandages on. It was an off day.
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Well she still deserves a :Kit n Stik;, a couple :boxing;, and then take her against the wall and :banghead; some sense into her.
No, I'm not a violent person. I just hate stupid people and want to wean out the herd :rofl; :rofl;
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My main neph: "Are you still on dialysis?" :urcrazy;
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My main neph: "Are you still on dialysis?" :urcrazy;
and then I say "I guess I need a new doctorr"
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My main neph: "Are you still on dialysis?" :urcrazy;
Say, "No,I have needle marks because I have started a new hobby..sticking myself with huge needles!"
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My main neph: "Are you still on dialysis?" :urcrazy;
Say, "No,I have needle marks because I have started a new hobby..sticking myself with huge needles!"
I took up knitting... it's harder than it looks!
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I ride the Paratransit bus to and from dialysis. I'm on Nocturnal so I have ALL my stuff. Egg shell pad, blanket, DVD Player, Backpack...etc...
I seem to always get a new driver everytime. I would think they would run out of them. But, it never fails... they will say "Whoa, what? Ya gonna Stay the Night"? Last night was "Boy, you having a SuperBowl party and spending the night".... (the game was already over...dumb ass)
I'm so fed up I don't know what to say!! :Kit n Stik;
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Answer: Yes I am. Are you the asshole picking me up in the morning?
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The nurse from my neph's office called me last week when they got my lab results that showed my function had dropped from 17 to 9%. She knows I've felt kind of crappy for the last few months, yet she asked me if I was feeling any better!! WTF??!! Yes. Yes I am. The toxins building up in my body actually give me a high. ???
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PB: Are you sure she was a nurse? I hate to be too much of a grouch, but the people in Doctors's office mainly
seem to be dropouts from the Bryman School. They think they know what they are talking about, but usually
just sit around blabbing and violating HIPPA by yelling everyone's name and problem. As much as I hated hemo
I sure felt better after I was on the chair. I'm now on pd cycler.
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Yeah, she's a nurse. She has to wear an id badge with all kinds of initials after her name, including RN! I realize that at my stage, how I feel can be an up and down ride and that she was probably told to ask me. It just made me stop and go 'uhh?' for a moment. 8)
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I have been on home hemo for a month now and people are finally coming to see my while I am on dialysis to see what’s its like. I was telling someone how drained I was and I just need to build up some strength. She told me that it was my fault I was not feeling better. I should take all this time doing dialysis and ride a stationary bike or walk on a treadmill.
I know people mean well, but really!!. You always can think of a comeback after the person is gone. I should have said “why don’t you try that next time you are donating blood”.
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Okay! I am getting the big stick out!
:Kit n Stik; :Kit n Stik; :Kit n Stik; That is for the nurse.
This is for the friend! :Kit n Stik; :Kit n Stik;
Some people need a wallop on the head!
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There are at least a 100 ignorant comments in these youtube videos mentioned here http://ihatedialysis.com/forum/index.php?topic=12133.0
:Kit n Stik;
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These are all too funny! I think the best one we got when hubby was getting ready to start and was talking with his uncle about it, the uncle said......................"think you ought to get a second opinion?" I was ready to knock him out!!! Hubby has dealt with the kidney disease for over 10 years so it wasn't like it was a surprise. There's no second opinion 13% function with uremia symptoms.
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Monday after 4 long hours of dialysis - and sitting in the chair for 20 minutes waiting to be hooked up -
- my tech asked me if I was sure I wanted to come off the machine---
"No, shit Dick Tracy" ( I am quoting Rerun)
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Earlier this week one of my nephs was making his rounds at the dialysis center. He approached me and said "You were just in the hospital, right?" (I haven't been in the hospital since the beginning of December!). My first thought was "This guy has no clue who I am." He asked a couple more questions that convinced me he knew nothing about me. I had to tell him the latest information and prognosis. Is it that hard to read my chart 2 minutes before talking to me to at least make it look like you know what is going on?!?
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Earlier this week one of my nephs was making his rounds at the dialysis center. He approached me and said "You were just in the hospital, right?" (I haven't been in the hospital since the beginning of December!). My first thought was "This guy has no clue who I am." He asked a couple more questions that convinced me he knew nothing about me. I had to tell him the latest information and prognosis. Is it that hard to read my chart 2 minutes before talking to me to at least make it look like you know what is going on?!?
Kitkatz needs to show him someting :Kit n Stik;
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Earlier this week one of my nephs was making his rounds at the dialysis center. He approached me and said "You were just in the hospital, right?" (I haven't been in the hospital since the beginning of December!). My first thought was "This guy has no clue who I am." He asked a couple more questions that convinced me he knew nothing about me. I had to tell him the latest information and prognosis. Is it that hard to read my chart 2 minutes before talking to me to at least make it look like you know what is going on?!?
I understand so well, my nep doc keeps saying you just had parathyroid surgery ----- yes, just last MAY
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A friend said to me:
" You must like being sick. If you would pray to God he would heal you instantly, "snap".
I replied that he hasn't so far.
"Well thats your fault for not having enough faith"!
That's much of the same opinion at the church I attended. I wont go back.
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That is too bad that they have that attitude. Ask them "why isn't everyone alive then". The fact is that God answers prayer and sometimes that answer is "no" and maybe it is to share your suffering with others to build their compassion and they are failing miserably.
Realize that people are not perfect but God IS and they know not what they do. AND yes that was a stupid thing to tell you!
:cuddle;
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That is too bad that they have that attitude. Ask them "why isn't everyone alive then". The fact is that God answers prayer and sometimes that answer is "no" and maybe it is to share your suffering with others to build their compassion and they are failing miserably.
Realize that people are not perfect but God IS and they know not what they do. AND yes that was a stupid thing to tell you!
I agree with Rerun, that was a stupid thing to say or senseless maybe.............I don't get it...........I wonder if they would say that to a sick family member? :urcrazy;
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Today, I went in for an Endoscopy...I wrote large letters on my fistula arm..Nothing on This Arm...and 2 "nurses" asked me "what is a fistula?" and "what kind of transplant would you be getting?"..hmmm....left middle fingernail, ya think???
:Kit n Stik;
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yes middle finger
wear pockets and shoot away
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Today at dialysis, I was about to walk into the clinic, and a young surgeon was sitting right outside the door in the vending area. He asked me if I was on dialysis, then proceeded to say that I was so young to be on dialysis! No, I just routinely walk into the hospital's dialysis unit with a big, fuzzy blanket for shits and giggles. ::) Two bonehead statements in 10 seconds! :banghead; And this was a surgeon!! I should have said he looked too young to be a surgeon. >:D
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The things people say just crack me up sometimes! :rofl; :sarcasm;
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Do you think he was just a "practicing surgeon"???? :rofl;
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Hmmm... ::)
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Today at dialysis, I was about to walk into the clinic, and a young surgeon was sitting right outside the door in the vending area. He asked me if I was on dialysis, then proceeded to say that I was so young to be on dialysis! No, I just routinely walk into the hospital's dialysis unit with a big, fuzzy blanket for shits and giggles. ::) Two bonehead statements in 10 seconds! :banghead; And this was a surgeon!! I should have said he looked too young to be a surgeon. >:D
Padd, maybe he was the orderly on "Scrubs". :rofl;
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Transplant coordinator for Wisconsin list conversation
Her: do you have any potential donors?
Me: No
Her: No family?
Me: No it's just me and my mom all my other family is distant cousins for the most part.
Her: Well, how about your mom?
Me: She's over 60, has diabetes and high blood pressure. Has a few things against her. :sarcasm;
Her: Oh, well no friends or anyone that has ever offered you a kidney?
Me: Uh, no. My boyfriend offered but he apparently has some kidney thing that would deny him.
Her: Well, does your extended family know you need a kidney?
Me: yes.
Her: And no one has offered?
Me: No.
**you can here the awkward silence for a few seconds**
Her: Oh. Well, you're AB+, which means you can accept from anyone! With a live donor at your age, oh, that would just be so wonderful! Do you have a facebook account?
Me: ummm...yes?
Her: Put it on your facebook that you need a kidney! :banghead;
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Oh God....and I'm already depressed today..................geeezzzzz.....poor you....poor all of us.
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I met this guy recently. I was telling him all about my situation - dialysis, etc. He says he knows why my kidneys failed. I said that I know why - diabetes and hypertension. He said (with an air of authority) "No, that is not the reason. You did not drink enough water!"
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People are stupid.
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Oh, Jess - here, next time take the big stick - :Kit n Stik;
When you're done, mail it to Bajanne.
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sometimes i get the feeling that the doctors and nurses don't really know that much about what they are supposed to be doing.
my wife, concerned that my pulse had been riding low for a few days, called the dialysis unit at the clinic. the nurse told her, 'well, you know that athletes have pretty low heart-rates, too.' i would have asked, 'oh, are they on dialysis, too?' but then, i'm just a trouble-maker. heehee
:boxing;
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I met this guy recently. I was telling him all about my situation - dialysis, etc. He says he knows why my kidneys failed. I said that I know why - diabetes and hypertension. He said (with an air of authority) "No, that is not the reason. You did not drink enough water!"
:Kit n Stik; or, "you didn't go to the bathroom enough"
or "drink all of this 64oz drink..that will make you go!"
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Why do they all harp on about a live donor. I get it too. They still ask me about any live donors. After four years do they think I like doing this? That I am hiding all the potential donors?
Don't they realize I would jump at any offers? How about they offer me theirs. I would take it!! :stressed;
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a man came to dialysis today to discuss transplants with each patient -- he told me to fine a living donor -- that is a much better way to go - and if I have a donor and we do not match then get that donor to donate to anyone and I could like trade-off --- I guess
--- he told everyone living donors are the only way to go ???
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Right, 'cause we've all got people lining up around the block to hand out spare parts. . . yeesh!
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they probably harp on about a live donor because they don't like dealing with cadavers. my neph was showing signs of frustration with my case, one day. i told him to chill out and relax, he's probably going to learn a lot more from my autopsy. he threw up his hands and said, 'hey, i'm not touching you!' nice to feel wanted, hey? :sarcasm;
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Ewww, I'd pass on autopsying someone I knew, too!
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Yesterday, one of my sister's best friends from when we were young found me on facebook. When she found out I was on dialysis, she told me she hopes I get better soon. Then today, I get a call from a student at the community college where I was going last year. I had received my desktop publishing certification last year and the school has student committee members call people who have earned certificates of their associate degrees and survey them. They ask questions about whether you are working, using the degree, etc. and other related stuff. Well, everything she asked me was a no answer by me since I am not working and am not using the certification. I got tired of all the questions, so I finally told the girl that my kidneys had failed, I was on dialysis. She apologized and said she hoped I would get better soon!
What is it with everyone? Are people that clueless?! I mean, geez, two days in a row!!
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Yes, Yes they are until it hits them. They finally will grasp it in a short time after it affects them. Of course I would have to say to them, How can I get better?
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This obviously wasn't said to me, but I just read it in the newspaper and just had to post it! Read the first paragraph of Abby's response. :banghead; Apparently you do not form kidneys until you are older. :sarcasm;
EARLY SCREENING FOR DISEASE CAN PREVENT KIDNEY FAILURE
DEAR ABBY: I was a healthy 12-year-old girl in junior high, sociable and energetic with no cares in the world, until one day my mother noticed I wasn't my usual self. I was tired and had no interest in any activities. Frustrated, she encouraged me to try out for my school's volleyball team.
What was supposed to be a routine physical for the team turned into a life-changing experience. I did not end up making the team. Instead I was diagnosed with chronic kidney disease. My test results showed that I had too much protein in my urine. After more tests, I was told I was in kidney failure.
I was only 12, and I didn't understand why this was happening to me. Nobody was expecting the news we got that day. The doctors told my parents that I would need to go on dialysis or have a kidney transplant and we should start looking for a donor.
A urine test was never part of any of my annual checkups. But protein in the urine is one of the earliest signs of kidney disease. That simple test might have prevented me from losing both kidneys.
Nearly 100,000 men, women and children are now on the waiting list for a lifesaving organ transplant. One hundred people are added to the list -- and 17 die -- every day. With early detection kidney disease can be prevented. So please urge your readers to get screened now and screened often. -- KLARISSA RAMIREZ, MINNEAPOLIS
DEAR KLARISSA: Thank you for your letter. I was, frankly, shocked to learn from it that kidney disease could strike a person at such a tender age. I'm pleased to pass along your important message.
Readers, March is National Kidney Month -- and March 12 is World Kidney Day. The National Kidney Foundation (NKF) has a screening program called KEEP, which stands for Kidney Early Evaluation Program. On World Kidney Day, KEEP will offer FREE screenings in cities across the country for people at risk for kidney disease.
If you or a family member has diabetes or high blood pressure, or if there is a history of kidney disease in your family, visit kidney.org to learn more and locate a screening near you, or call the National Kidney Foundation at 1-800-622-9010.
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that's one of our biggest problems, a majority of people think kidney disease is an "old peoples" disease.
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Oh yeah, I almost forgot about this one! About 3 weeks ago, I saw the nurse practitioner who works for my neph for the first time as she was making the rounds through the dialysis unit. She was asking me about my kidney failure history and I was explaining how the neph I was seeing in Cincinnati wanted me to transfer to her boss since he is in my town and I wouldn't have to drive an hour each way to dialysis. So she then proceeds to ask me if that was a pediatric nephrologist! WTF??!! :o I am 31 years old!! Now I know I look young, but good lord. Did she even read my chart?
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That would have been a good opportunity for a smartass comment back. I never get doctors like that yet, just CNA's in the hospital.
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My trouble is that I think of the smart ass comebacks well after the moment has passed.
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My trouble is that I think of the smart ass comebacks well after the moment has passed.
Happens to me all the time.
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I would say text me ASAP to get an answer ;D :rofl;
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I do not text, shall I just send smoke signals?
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Sure, but I'll just think California is on fire again. :sarcasm;
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:sarcasm;
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Sure, but I'll just think California is on fire again. :sarcasm;
:rofl; :rofl; :rofl;
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Evidently a lot of people think that all kidney failure is caused by diabetes.
So when I tell someone I have kidney failure, it's always the same routine:
Q: Do you have diabetes?
A: No.
Q: Do you have high blood pressure?
A: No.
Q: Do you have heart disease?
A: No.
Q: Then how did you get kidney failure?
A: Urinary retention from BPH.
I've been doing that routine so many times, I'm sick of it.
I had met with the Peritoneal Nurse at my center to discuss switching to PD. And she started in with the same routine. This time I couldn't take it any more so I replied:
Q: ....Then how did you get kidney failure?
A: The Lord smote me with His Mighty Hand.
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I have read these threads almost constantly the past couple of weeks. As a new dialysis candidate I'm sure I would have made many of the ignorant comments. I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.
Since November when I found out I needed to start dialysis soon, I have questioned why the lack of general information. I mean all of the different treatments, causes, acronyms and types of dialysis can make your head swim. I mean more awareness would general more knowledge which would generate more money which would generate more education which would generate more research which would generate less stupid (annoying) questions. Omg, I gotta think about something else don't I?
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Evidently a lot of people think that all kidney failure is caused by diabetes.
So when I tell someone I have kidney failure, it's always the same routine:
Q: Do you have diabetes?
A: No.
Q: Do you have high blood pressure?
A: No.
Q: Do you have heart disease?
A: No.
Q: Then how did you get kidney failure?
A: Urinary retention from BPH.
I've been doing that routine so many times, I'm sick of it.
I had met with the Peritoneal Nurse at my center to discuss switching to PD. And she started in with the same routine. This time I couldn't take it any more so I replied:
Q: ....Then how did you get kidney failure?
A: The Lord smote me with His Mighty Hand.
Yeay verily!
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:bow;
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I hate when people look at me and say, "Oh, I could never handle dialysis. I just couldn't do that." I'm thinking... um....yeah, ya could. If you wanted to LIVE! Do people really think we do it just for fun?!
My other issue, when I was dialysis, is that wherever I went with my Grandmother, she would introduce me as the "one on dialysis" as if it was some pity party. Then everyone would say how horrible it is and blah, blah, blah. I kinda feel like my Grandmother enjoyed getting that attention from people. I hated it!
Oh and I just LOVE hearing conversations people have about not wanting to give their organs when they die because they think they won't get into Heaven without them. These type of comments usually take place where people don't know me. This happened in an English class once and the professor brought the topic up. I didn't hear from one person in the room who wanted to give their organs when they die. But if THEY needed one to live they would be there with their hands out.
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I don't get that logic at all - do they think God's going to look at them at the Pearly Gates and say "Nope, sorry, you saved someone's life with an organ donation - you can't come in here!"?
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Apparently so jbeany. Crazy huh? Of course I was too shy to "out myself" and tell everyone what I was going through and how I felt about their ignorance. I look back on that day and I get so mad at myself for not speaking up. But I was young and scared. Now, watch OUT! I don't hold back. LOL!
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Oh and I just LOVE hearing conversations people have about not wanting to give their organs when they die because they think they won't get into Heaven without them. These type of comments usually take place where people don't know me. This happened in an English class once and the professor brought the topic up. I didn't hear from one person in the room who wanted to give their organs when they die.
I think that is the stupidest thing I have ever heard!!! :urcrazy;
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Tell me about it TynyWonder. That is exactly what I thought. And this coming from my favorite professor and my college peers. :urcrazy;
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I have read these threads almost constantly the past couple of weeks. As a new dialysis candidate I'm sure I would have made many of the ignorant comments. I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.
Since November when I found out I needed to start dialysis soon, I have questioned why the lack of general information. I mean all of the different treatments, causes, acronyms and types of dialysis can make your head swim. I mean more awareness would general more knowledge which would generate more money which would generate more education which would generate more research which would generate less stupid (annoying) questions. Omg, I gotta think about something else don't I?
It's simple...it boils down to money. Dialysis is a gold mine for the medical community. It's more lucrative to keep us barely holding on at the whim of their machines and their medications than to come up with a cure.
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I wonder if it should be labeled as "things well meaning but uneducated people have said" (for the most part I mean as some were out and out ignorant.
Excellent point!
Many of us were uneducated about CKD before it affected us.
8)
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I was one of those! I knew the basics but there was so much more! Thank God for IHD! So, we need to keep spreading the knowledge. :2thumbsup;
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I said the other day I didn't feel good. My boyfriend's response? "You never feel good...you DO have kidney failure!"
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I think the problem in my situation is that people KNEW I had kidney disease. They knew that I was on dialysis and I did tell them why I was so tired. I just think they never really believed it. Like they knew it took a lot out of me but that they didn't really think I'd be THAT tired. I honestly don't think there is much more I could have said to some people to get them to understand. I think some people (like my Aunt) would need to actually go through it to get it.
No one REALLY understands how tired you are.
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no one will ever understand how tired I am
"How can you be tired?" "You just got out of dialysis."
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"How can you be tired?" "You just got out of dialysis."
Yeah, right?
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no one will ever understand how tired I am
"How can you be tired?" "You just got out of dialysis."
Oh my Gawd! They just do NOT get it do they?
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Ignorance is bliss.
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This is serious and probably "blissful" but one of my doctors and the nurses from the class said that'd I would feel really good after dialysis. I really thought that was true.
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This is serious and probably "blissful" but one of my doctors and the nurses from the class said that'd I would feel really good after dialysis. I really thought that was true.
yeah this is the difference between those that understand what its meant to do, and those that experience it.
"really good" is relative I suppose. I mean consider the alternative.
Sometimes I finish dialysis and I go home and curl up for a few hours and have a cat nap. Other times I am fine - I have gone to the footy and screamed and yelled and generally carried on!
The thing is you don't come out feeling refreshed like an energizer bunny or something. At least I haven't. You are living absolutely, and you obviously would feel better than if you DIDN'T have dialysis (because you'd be much more sick with all the toxins!) but really.. to say you'd feel "really good" is a bit unfair because it could set up unrealistic expectations in some people. Some might hear that and think they'll be bouncing off the walls or something after it.
Actually most of the time I'm so happy to be out of that chair and able to move my arm that yeah, I do actually feel really good!! Hey, they were right all along!!! :rofl; :yahoo;
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OK....I got one for you. I was in the ER last night. I smashed up my leg....whole nother long story.
Anyway....I was giving the guy who was registering me my insurance card and my medicare card. He asked me how did I qualify for Medicare. I told him it was because of kidney failure...he says..."Oh neat" I don't know what is so "neat" about kidney failure. :urcrazy;
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cool 8) everyone on this site with kidney failure -- we are cool :cheer: :cheer: :cheer: :cheer:
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from what you wrote I think he meant "neat" that you had medicare. I think sometimes we are too sensitive and maybe should look for positive angles coming from people who don't understand what its all about.
I found out in November right before Thanksgiving that dialysis is coming. Immediately I called my brother and my two best friends. I've not heard from any of the there since then. I think they must be scared. Or perhaps they think I'm going to ask for a kidney (nothing is further from the truth). Yes, it hurts me that they don't call but at the same time I know there is a reason.
But I do think that in general people do the best they can.
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My husband told me today that I have no reason to be "bitchy" like I have been this past week. Excuse me? For a week now, I've been in extreme pain, can barely move, I've been throwing up almost every day and I can't stay awake, my kidneys have failed and I'm stuck at dialysis for what seems like half of my week. I have every right to be "bitchy" once in a while!!
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I had a sense of humor about his comment. :rofl; I told him no really...I am 65 years old. (Only 39 actually) :rofl; (I hope to make it to 65!)
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My trouble is that I think of the smart ass comebacks well after the moment has passed.
Happens to me all the time.
Oh I can, I just don't always say them out loud.
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I was at Walmart and I ran into a teacher I used to teach with -
she said, "oh, are you still doing that dialysis thingy'
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Did you say "yeah that dialysis thingy is keeping me alive". Ugh, you know I love life but sometimes I hate people.
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Oh Twirl...where was your stick????? :Kit n Stik;
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"thingy" - :rofl;
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I hate it when I am feeling grief-stricken, and someone will point out to me- that bad days are to be expected, and I should expect more of them.....well no SH*T! Like I dont know that!!
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"bad days are to be expected?" No Shit Sher Lock!
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when on hemo my machine was alarming and my after I asked my nurse to please come turn it off (going for 10 min straight) she said ..... and I quote
"I'm not coming back over here unless your machine stops"
:rant;
That was so ignorant that I refused to let her touch me agian and eventually left the clinic. But she is still there listening to the beeping. and awful or not I hope all her dreams are filled w beeps.
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and awful or not I hope all her dreams are filled w beeps.
:rofl; :rofl; :rofl; I loved that one! I hope they are filled with *beeps* too! ^5 (high 5)
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I hope her dreams are nightmares with sirens.........
glitter..I so know what you are talking about...3 weeks after my ""Aunt" walked in, said lets go out today, it's time to get over it....I still don't talk to her and it's been mmm 20 years this December 27 that my first husband was murdered.
Today an acquaintance of mine got back in touch with me. I havn't talked to her since 2005. She said "I really hope you recover from this dialysis thing soon"..........yup, like 2 years ago would have been good. I sent her an email explaining all the facts, straight up. :Kit n Stik;
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G-ma
like going out is going to help you get over someone you loved with all your heart
geeze, did she ever lose someone she loved
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G-ma
like going out is going to help you get over someone you loved with all your heart
geeze, did she ever lose someone she loved
You have to think she never had......
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you got it.........
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My friend lives in a "everything is nice and happy" type of world. I got a text message that said..and I quote: "hey I just wanted to let you know that I miss you and I hope that you get better. You have been in my prayers."
Cause you know after 1.5 years of kidney failure my function will come back out of the blue. :Kit n Stik;
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My daughter in law sent me an email today saying she hopes I feel better. Better than --what? Crap? The email made me feel all warm and fuzzy! :rofl;
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My daughter in law sent me an email today saying she hopes I feel better. Better than --what? Crap? The email made me feel all warm and fuzzy! :rofl;
You make me laugh, Paris but I sooooo know what you are saying............people just don't get it, do they? :waving;
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each baggie had two lemons in it - whole, fresh off the tree lemons - I gave them to patients on my dialysis shift --- I picked the lemons because we were going to freeze Tueday and I did not want them to go to waste -
a nurse sees me and she says, " They better not eat them on my shift!" ( bitch )
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Sounds a bit like the nurse was the one sucking on a lemon. . . .
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I was just chatting with my sister-in-law on Facebook and she asked me how I was doing. To be honest, I am not a fan of this person (she is a spoiled brat and is proud of it and demands being the center of attention; the complete opposite from me!), so I told her like it is. I feel like crap, I'm exhausted, I can't sleep and dialysis is not going well. And I told her exactly why dialysis sucks. And do you know what she said to me??? She told me that if I just think of positive things while I'm there, everything will go well. She also said that it's not that bad! WTF??!! She hasn't even got a f***ing clue what it's like to have kidney failure!! Before we had started chatting, I was reading my page and her post about "the great" walks she is participating in this summer for depression and something else I can't remember at this point. So I posted a comment asking her what about walking for kidney failure or diabetes? And she deleted my comment! We started chatting because she decided to tell me she deleted it and why--apparently my comment was going to detract from the fact that she was walking!!!! I was stunned! I called her on it though. It shut her up pretty quick. I hate stupid people. :banghead;
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:sir ken; just today I was telling my social worker and the director of the unit about this web site
the director said,"Why would anyone hate dialysis?"
Gee, I don't know........1. needles
2. sore bottom
3. blood
4. vomit
5. cramps
6. scales
7. thirst
8. diarrhea
9. lab results
That's a bunch of good reasons! I removed unit directors because she was standing there, and I like her alot!
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I have this aunt - she's not old and feeble, she's actually just a couple years older than me. Anyhow, she's one of those who is the expert on everything. She keeps telling me that I need to drink more fluids. I have explained to her several times why my fluids are VERY restricted, and that they are my enemy. But, since she knows everything, she insists that everything that is wrong with me would be fixed if I drank more. Geesh!!! She even went so far as to tell my kids to take water bottles and place them around my house to 'remind' me to keep hydrated. Thank goodness my kids are smarter than that.
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I have this aunt - she's not old and feeble, she's actually just a couple years older than me. Anyhow, she's one of those who is the expert on everything. She keeps telling me that I need to drink more fluids. I have explained to her several times why my fluids are VERY restricted, and that they are my enemy. But, since she knows everything, she insists that everything that is wrong with me would be fixed if I drank more. Geesh!!! She even went so far as to tell my kids to take water bottles and place them around my house to 'remind' me to keep hydrated. Thank goodness my kids are smarter than that.
:banghead; :banghead; :banghead; OMG I don't think I would be so polite. grrrrr
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I have an aunt like that.
Not my kidney problem but another undiagnosed pain for which I'd been scanned with MRI and ultrasound, but the specialists at the hospital couldn't pin it down.
But my Aunt knew better. She didn't even speak to me before making her diagnosis. She'd only spoken to my wife on the phone. I would be cured if I took this particular brand of snake oil. It was so outrageous I burst out laughing. I couldn't stop. I hadn't laughed as much in a whole year.
I hope I didn't upset her.
:yahoo;
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Haha wow what some people say. My bestfriends mother told me to drink some tea, and it would cure my lupus. Lol. I didn't know what to say, I just smiled and said I would look into it. haha. It was funny. It is very ignorant, but they also are just trying to help. The thought is there even if they have no clue what they are talking about.
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The lady at the drive-thru asked my husband if he beat me up when she seen the scar on my arm from my AV fistula. lol
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The lady at the drive-thru asked my husband if he beat me up when she seen the scar on my arm from my AV fistula. lol
What a thing to say!! And if you were a victim of abuse - that would be even more inappropriate, if not dangerous. That lady needs to rethink her words in the future.
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When my mom first went on dialysis, a church friend (who is a nurse and had a FIL on dialysis) told me that most kidney patients on dialysis only lived an average of 7 years. She told me the same thing at a different time (as if she had forgotten she had shared that bit of news).
So, when I was told I had to go on dialysis, in my mind I started calculating how much time I had and how old my boys would be when I died - and wondering how they would take it at those ages.
I have a different attitude now but good grief. Do people even think? This is not even a "mean" woman - just not thinking.
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As I was leaving dialysis the other morning at 4a.m. with a sinus infection and no voice my tech turns to me and says:" I hope you feel better. Be sure to drink plenty of fluids." :rofl; :rofl; :rofl; :rofl; :rofl;
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Be sure to drink plenty of fluids." :rofl; :rofl; :rofl; :rofl; :rofl;
Holy automatic-response!! :rofl;
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Just remembered one story to add here...
As hubby's transplant was failing last year, he was putting on a lot of weight and noticing a lot of swelling. One day he grew short of breath. We didn't know the signs to look for, so I convinced him to go to an urgent care center to get checked out. The brilliant doctor there told him....
Go buy some support stockings to take care of the swelling.
Ok, but what about the shortness of breath? "Oh, sometimes when something is going on medically that you're not familiar with, you get anxious and that makes you feel short of breath...."
Idiot. Twelve hours later we were in the emergency room being admitted because he started coughing up blood in the middle of the night.
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Just introduced myself over on the introduction forum, but I had to come here and share this.
Went to the e.r. a week ago for pain unrelated to my dialysis or kidneys, and the nurse comes at me with a syringe and needle and tells me she is going to flush my pd catheter with saline and take a sample of the fluid. I asked her where she thought she was going to stick the needle in at, thank goodness the pain medicine they gave me didn't work and I was coherent enough to stop her. I ended up making her put on gloves and a mask and get me a mask and I drained some fluid into a sterile cup for her. Yikes, what would she have done if I was passed out?
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good for you
and you have to be careful in the hospital -
even with signs all over the place -- techs would want to take my blood pressure in my dialysis arm -
one got a little feisty and told me he would take it where he wanted -
I told fine and I will see you in court-
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I have a sister who has no clue and chooses not to learn about dialysis and side effects and the other day I said I just need you to get informed and understand so we can have a conversation once in a while..she came back with...I don't know what I can do for you...I suppose you think I should give you a kidney...this all very sarcastic....I just said Oh Hell No..I have never nor will I ever ask anything of you.
:Kit n Stik;
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At my dialysis center, I was trying to tell one of the dialysis nurses about my itching problems during and after dialysis: That when I try to sleep, the itching disturbs me so much that I've been sleeping in a leather recliner because the soft leather is less itchy, etc. I said "Of course, you don't know what it's like for me after I go home from here." She retorted,
"DON'T TELL ME I DON'T KNOW WHAT IT'S LIKE! THAT JUST DRIVES ME CRAZY!"
Gee, lady, I'm the one who is standing on the edge of death, I'm the one who sometimes so terribly after dialysis I can't sleep, I'm the one whose entire life has been turned upside down by ESRD--but telling YOU that you don't know what it's like drives YOU crazy???
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Would you like to borrow the stick and light saber for a few minutes! :banghead; :Kit n Stik;
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I was in a group of people who got asked if they had ever been so thirsty, drank, but never quenched of their thirst.
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Someone in my family actually said dialysis was like a job you had to goto, thats all. After all it didn't hurt right?
When I to;d them I needed a fistula they siad, well that doesn't sound so bad.
Iwonder how bad it would bew if it were them?
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You can't change them. You just gotta laugh!
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Someone in my family actually said dialysis was like a job you had to goto, thats all. After all it didn't hurt right?
When I to;d them I needed a fistula they siad, well that doesn't sound so bad.
Iwonder how bad it would bew if it were them?
Except you can quit a job. And jobs compensate you for your time.
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I wear overalls a lot because my right kidney is the size of a football - I don't know which is worse, the many people who call me 'farmer girl' or the nurse who (when I was trying to get admitted to radiology for a fistulagram) told me I was in the wrong place, that "maternity was down the hall"!
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Maternity is down the hall? Haha
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You could have looked at her and said "you look so much like my Grandmother -- what year were you born"??
:yahoo;
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:rofl;
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"But she's not even your family!"
Screw you! She's my best friend, our daughters are best friends. God brought us together for a reason. Trust me, she's been more of a blessing to me than I could ever be for her. We've been part of each others lives for YEARS now. Family isn't always dictated by blood. I consider her my sister.
My husband isn't "blood related" to me. Does that mean we aren't family? Stupid people. My husband is the most wonderful man on this planet (IMHO :)). He's 100% behind me in helping Leslie. He fixes anything that's broken at our house and hers. He helps her when I can't.
Not my family my a$$.
Inara and Leslie
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When I was first diagnosed pre-dialysis I heard that same "It's just like a job" figure of speech from both
my Neph and my internist. It sounded good until I actually got into that hemo chair. I now consign people
who used that phrase to the second circle of Hell where the loudspeakers are forever blasting " It's just like
a job. It's just like a job."
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My Husband has never been a Big Man. Top Weight, His whole Life was 140. He was in Good Health, but one Day, stopped Eating and started Sleeping. He thought He had the Flu ( He actually went to Our Family Doctor, who told Him this was Probably the case, Dumb Doctor ) This went on for Two Weeks and then He had a Seizure and was rushed to a large University Hospital. I was told that He was in Complete Renal Failure and in as Critical Condition as He could be and still be Alive. I got to the Hospital and ran to the ICU Unit, where He was in a Medically Induced Coma and was met outside the Door, by Two, Top Notch Nephs, ( who had never seen this Man Before ) the first thing they said, to me was " Your Husbands, so Thin, Do You Cook for Him?" What? What? What?
No, Doctors, In Forty Years of Marriage, it never occured to Me to Break out the Pots and Pans.
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I have PKD and have HUGE kidneys so my stomach is a little rounder than I would like. I have had several people ask me "when is your baby due?" I also bruise easily so when I have an infiltration I have been asked if I had been in a car accident?
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My husband actually said that he had seen Natalie Cole on TV and she said that "dialysis was no big thing, that she had dialysis all over the world." It must be that my attitude wasn't too good.
Well after beating him silly he has never said that again. Matter of a fact he has offered me a kidney so he is forgiven. Unfortunately he is over 66 which is the cut off age for donation and he hads heart problems to boot. But at least he offered.
My children must be i hiding because they haven't offered. No one else in family is young enough except for one sister who calls every so often and tells me how much she has been thinking about me. LOL
I thinkI would give any of them a kidney so it kind of hurts. I don't like to admit it, but it does.
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The dumbest thing was asked about me by one of his sisters. Sort of went like this
Sister- How's Pat doing?
Husband - She is pretty tired,she had dialysis this morning
Sister -Well she only had to go one time didn't she?
Husband- No she goes 3 times a week
Sister- Thought she had to do it once and she would be cured.
DUH?
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When some lady at church found out about my kidney disease.....
She said : It can't be .! You do not look ill at all.....
I wanted to say. Just wait, I will grow big humps on the outside of my body soon... not just on the inside.
Why does one have to LOOK ill to be ill...... I am ill. I am thinking of bandaging something.... maybe I will look more ill.
hehehhe
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My son's girlfriend was a senior in high school last year (wonderful girl!). She had an Advanced Biology class where dialysis was being discussed. As part of the discussion, the teacher spoke of it lightly and told the class that dialysis doesn't hurt. My son's girlfriend raised her hand and basically said that it depended upon your definition of 'hurt' - she discussed in detail the effects of dialysis that she has seen - the class heard some stories of the needles and poking, nausea, cramping, exhaustion - and struggle to just get through the day.
I don't think the teacher will use that phrasing again.
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I think that this, like a majority of the things we think are stupid, are not stupid but rather ignorant. Like this teacher. What is needed is not disdain for these people but rather education. Hey, Hooray for you son's girlfriend. That's the way to handle these issues.
You know, just a few short months ago I would have thought that one dialysis treatment is all that'd you need. Rather, I wouldn't have heard of the word dialysis. Many of these things I see in this thread could have been attributed to me before last November. I wish I had been educated on the issues... cause I ain't stupid. Actually if I had been better informed years ago I may have avoided (or at least postponed) my situation.
Sorry folks, not trying to be confrontational. Just speaking how I feel.
Dan
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Many of these things I see in this thread could have been attributed to me before last November.
I think you're exactly right.
How many of us know what a person with myasthenia gravis goes through? Or for that matter Amyotrophic Lateral Sclerosis, Muscular Dystrophy or Endometriosis?
I think in general, we all need to be more tolerant of those who don't understand our illness.
Besides, some of the most ignorate things I heard have come from fellow patients with CKD.
8)
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I think Zach is 100% right.
How many people really understand what dialysis is? And how it affects people? Too few, unfortunately.
At least there are 2 mainstream cartoons support the education of the public....South Park and Aqua Teen Hunger Force. Love ya, Meatwad!! :yahoo;
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When I was diagnosed with kidney failure, it was like learning about a whole new world. Previous to that I was ignorant about dialysis. I don't find that insulting, just the truth. I had no knowledge of dialysis, therefore I was ignorant. Now I know waaaay too much about dialysis, but yet find it funny and yes, sometimes frustrating when coming into contact with those that are still ignorant. I especially find it frustrating when people talk about it as an authority, when in reality, they know nothing. I appreciate being able to come to this site and be able to vent some frustration or share a laugh with those who do understand.
Personally, if I think this is a thread that offends you - stay away from it. I, for one, really appreciate it.
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Personally, if I think this is a thread that offends you - stay away from it.
I don't understand.
Who said they were offended?
8)
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This is a really intersting topic.
One of my more memorable incidents was in a biological anthropology class. We were discussing transplant. I mentioned that this subject was meaningful to me because I had had one. At one point, a student asked in all sincerity if transplants should even be performed, because it interfered with evolution. ???
I had had a class with this woman before, and knew she was very bright and seemed a genuinely nice person. I don't think she realized that to me, it sounded like she was saying "It would really be better if you were dead, you know, for the sake of evolution." So, I just pointed out to her the widely-accepted fact that humans interfere with evolution in countless ways, and then the discussion went off in some other direction.
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Here we go again... l and I had decided to post nothing . Perhaps, cherpep, you should read my last post again in a less judgemental way. People in hear are centrainly not ignorant regarding kidney diesease (for the most part). I was and you people educated me somewhat. For that I am grateful. By the same token, Cherp, I was commending your son's girlfriend for education her professor. I mean we all are ignorant oh some subject and we simply need the information.
True, many things in here are funny. That's why I read it. By the same token, what's funny about people not know how often you dialysis or expect there is a cure and it won't last forever. Those things, in my humble and mostly disregarde opinion, need the education.
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Sorry folks, not trying to be confrontational. Just speaking how I feel.
Same here. I'm sorry if I came off so judgemental, that really was not my intention. I understand how you dislike a lot of the negativity, and I was simply making the point that I really appreciate this thread, even if it could be interpreted as negative. I personally don't find it negative, just chances to share, vent, and laugh. Based upon your comment about not being confrontational, I was honestly making a sincere suggestion (not an attack) that if threads like this do bother you, then you could just not read them. Why trouble yourself with something that displeases you?
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True, many things in here are funny. That's why I read it. By the same token, what's funny about people not know how often you dialysis or expect there is a cure and it won't last forever. Those things, in my humble and mostly disregarde opinion, need the education.
I did actually find those original comments funny. For me, dealing with this disease and its treatments have become so commonplace, that occasionally when I hear a naive comment like that, I laugh. I was in those naive shoes not so long ago, but I gotta chuckle when I think about it now. I deal with a lot of things with a chuckle - it's what gets me through. It's nice to be able to share those experiences here with others who feel the same way. It's OK that you don't find humor in it, different things tickle each of our funny bones, and we each deal with these issues in our own way.
I think of these comments like those funny quotes from students. Like when the teacher asks what the 4 seasons are, and the kid replies salt, pepper, mustard, and vinegar. I think that's funny. The kid needs to be educated, but his response is still funny. Just because the teacher finds humor in is answer, she doesn't think less of the kid or stop teaching - she just finds his response funny.
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Sister number two called tonight to tell me all about her hysterectomy and how well she had done and that she had no pain. It was good to hear she was OK and all but here I am with a new fistula and she acted as if it were a walk in the park compared to her operation. she had a vaginal one with no complications.
I am beginning to see that others don't view kidney problems and dialysis as anything very big,as long as it doesn't happen to them. They know very little about it.
I am at least glad I have you guys to talk to. It seems I am pretty much alone.
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I didn't know anything about dialysis until my partner had to go on it....
BUT...when you tell someone all about it and later they say, "So, he's on the mend then?"
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I get what you's are saying that we cannot judge the ignorant as stupid but....that they are not stupid just uninformed.
They should rather not say anything STUPID if they do not know about it ... they should rather ask questions or not say anything at all.
It goes with anything in life ... if you do not know what you are talking about ..... rather keep out of the conversation. (or go and read up on it :0 )
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ps...
like me now
hehehehhe
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If you don't discuss it how will you ever learn. I find that few people know everything about anything.
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The whole situation is similar (though not the same before you jump on me) to younger people thinking that because you are older you have no more mental faculties left – at least none worth listening to. It seems that some think you’re old and I’m young so I know better. How could I educated people regarding the fact that an old body doesn’t cause the mind to go?
Let me try a little trick. Let’s think of communication of ideas as a current going through the line from a sender to a receiver (maybe a text message or something as antiquated as a phone line). Regardless, the idea is to transfer a message from one to the other. Whose responsibility is it that the message gets transferred? 50/50 sender and receiver, 60/40 sender and receiver, 20/80 sender and receiver? Think about it a second. How about 100/100 both sender and receiver? Hey, if I'm the receiver and it is to my advantage that the receiver gets the message then is 100 percent my responsibility. Conversely if you are the receiver and you really need the information, then it is 100 percent your responsibility. Conclusion: If I want you to give this issue some thought then it is 100% my responsibility to convert your thinking through communication. Anybody agree?
Maybe this will apply to the education vs. stupid (or ignorant) discussion. I have ESKD and I’m on dialysis. If my friend asks how long I’ll be on it, I need him to understand that this is for a lifetime. It is 100 percent my responsibility to make him understand. To use a common word, it is my responsibility to teach him. (If you’re ever interested I’ll explain when I don’t use the verb to teach.). And he being my friend, it was 100 % his responsibility to get the information. Wow! That rarely happens that the information is equally valuable to both parties.
Conversely, when I joined IHD in March, I had ESKD. I knew nothing. I thought a kidney was an organ meat. It became 100 percent my responsibility then to gather as much information as possible from as many different view points as possible. Two guys on here that I greatly admire gave me the information I needed. I was rewarded with a life. Hopefully they both are rewarded with the gratification that they saved a life – such a life as it is. I don’t know what percent of responsibility they took but it was enough to total 100 percent plus.
I only said that old people aren’t stupid. I NEVER once said they weren’t boring.
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I only said that old people aren’t stupid. I NEVER once said they weren’t boring.
And that wasn't boring, either. In fact, quite informative. :2thumbsup;
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Dan,
I think your example of communication is very interesting, and I think most on here agree that it is up to us to share this information with others in order to educate those who don't have the knowledge. Why can't we do that, but still share a chuckle with those who do understand? I again draw the example of the student who says something funny. The teacher finds it amusing, but doesn't stop teaching. She shares an amusing anecdote with other teachers, but continues to educate the child.
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To that point, Cherpep, I really applaud your son's girl friend who took time to educate the class she was in.
And, I frequently get a really good chuckle out of "ignorant" things said by folks. I get the biggest chuckle when I realize that I have said something ignorant. (Although that is sooo infrequent I hardly ever laugh. :sarcasm;)
I point out to my students that there is nothing wrong with ignorance. The problems arise when people decide they prefer to BE ignorant instead of becoming educated on a topic.
Aleta
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Amen Aleta... beautifully said.
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I point out to my students that there is nothing wrong with ignorance. The problems arise when people decide they prefer to BE ignorant instead of becoming educated on a topic.
I agree 100%. Nicely stated. That's a keeper.
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Im not sure if this is ignorant or not.
But people will ask me how im doing and how im feeling. Since i dont look sick. And as i start to explain to them how im feeling or even about dialysis they pipe in with. I had this surgery or i have rheumatoid arthritis and turn the conversation into or about themselves. I smile say wow thats pretty tough must be hard on you and kindly walk away.
Many people will ask but very few want to actually listen.
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The key is in your last statement. Do they really wanted to know? For those who don't you can tell. I normally juse say, "fine, how are you."
Yes, that was probably rude.....
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I do the same thing, Dan. The ones who really do want to know will always ask another question. Then, I engage in a true conversation.
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Way back in olden days when PCs were new to the corporate workplace it was my job to train employees in their basic use. In those days IBM PCs has no hard drive and only one floppy drive (Drive A:) There was not a WWW or even a LAN much less Twitter and Facebook. Lol. Not even a mouse.
In one of my early sessions of training a very high up executed wanted to attend. I’m talking Presidential level. Remember, the PC had only one drive so my spiel went something like this:
Insert the Disk in your packet labeled PC Dos. (Then I’d explain what was happening and why we had to do it.)
Next, Insert the disk labeled (whatever program we were working on) followed by a short explanation.
Next, Insert your Data Disk (that’s the one with your name on it) Blah blah blah.
At this point the Executive looked a little frustrated so I walked to his desk. He looked up and quite confused said, Dan, My Disk Drive is Full.
Some people snickered but not i. Ignorant? Nah, he basically ran a Fortune 50 company, and neither did I laugh at him (might have been because of who he was).
The lesson that day was mine. Never make assumptions about what people know and don’t know. Often things obvious to us are not obvious to everyone. It stayed with me. There after (probably did that same session hundreds more times) my spiel was more like:
Insert the Disk in your packet labeled PC Dos. (Then I’d explain what was happening and why we had to do it.) And remember to say:
Remove the Dos Disk and
Next, Insert the disk labeled (whatever program we were working on) and then repeat
Remove the Program Disk.
Etc.
Some of the stupid things I say and do in the “off topics” are funny to me. I just find it difficult to laugh at people who are genuinely trying to say something nice, etc. Oh, not kids… Kids were made to be funny. And many of the things in the post are amusing and some are downright rude. My issue is not with people making fun of those things. I have one that happens here every M,W,F at 4 PM from a , not ignorant, but rude person. If this post weren’t already so long, I’d tell you about it.
Ok, Dan. It’s time for you to give it a rest. After all, you have used the spell checker.
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I may make some of u think im absolutly ignorant but I do have something to say about what you alllseem to be thinking..alot of us just does not know about all the problems you have it is up to you to educate your friends and family even a stranger. I come here to learn and I know some of my ? may be stupid to you but It is important for me to know. So I ask . And I want you to know I do appreciate your answers. I am looking down the road at dialysis and am very scared but will still ask questions.. I have maybe a stupid question but will post in the right thread not here.Thank you and I hope not offend you but give us unknowers alittle break . I have learnt alot from you and hope to learn alot more before I have to do dialysis Sorry to ramble
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Brandy, that is absolutely the point. If you have questions ask. If someones answers you then ask someone else. Get as many opinions as you can and then decide which you have the most faith in. In the end, it all comes down to your judgement. And if you get questions from friends, etc., then answer the best you can always leaving an opening for another question.
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HI, Brandy,
Ignorance is nothing to be ashamed of, especially if you are trying to find the answers that will reduce that ignorance. :2thumbsup;
IHD is a great place for that.
BUT, we all need a place to share some of the stuff that happens to us because of kidney disease. This is a great place for finding understanding among others who have experienced the general ignorance about ESRF, too. This is a thread for that. :clap;
Keep posting and asking questions. :thumbup;
Aleta
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Brandy, I think we use the wrong expression maybe with Ignorant. Maybe uninformed would be a better way to go. I guess it wouldn't be so clever as a thread heading though..."uninformed things people have ... "
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thank you guys , you really didnt come down on me as I thought you would. What I really was saying there is so much info we dont know and to ask is all we can do ... Yes I know some people dont seem to care but the way I look at that is they dont matter anyways. Family or not. I have come to learn you guys on dialysis are great people and you really do care about each other , you have your family right here., I would also love to belong to a family as good as yall are. Can you tell Im from tx. by my slang.? haha it comes out even in typing. Bottom line is you guys are great . And yes I will still ask questions.
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Im not sure if this is ignorant or not.
But people will ask me how im doing and how im feeling. Since i dont look sick. And as i start to explain to them how im feeling or even about dialysis they pipe in with. I had this surgery or i have rheumatoid arthritis and turn the conversation into or about themselves. I smile say wow thats pretty tough must be hard on you and kindly walk away.
Many people will ask but very few want to actually listen.
Oh so true! They want you to say that you feel so much better and everything is fine! They DO NOT want to hear any problems. Even family. Just smile brightly and say Great! Thats it!
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I donated a kidney to my daughter in 1993. A friend asked me if I ever had side effects from donating. I said well I find when I walk it is lop-sided sometimes. He took me serious and I had to tell him I was only joking.
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An aunt told me that the bone biopsy she'd had was the worst pain she'd ever experienced in her life. This was just before I was getting a bone biopsy. Soooo helpful. My husband was beside himself with worry. Actually, in the end, it was completely pain free, and I didn't even know when the lovely doc had done it!
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Even the doctor had told me how bad a bone marrow biopsy hurt. It would be the very last thing we'd test for low platelets since it was so painful. Not a bit. The guy who did it looked like a lumberjack. Said wouldn't hurt because he would use the arm he used to lift this beer.
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Someone asks my husband if he did drugs, because they could see his fistula. I responded first and said yes, and asked if she wanted some. The expression on her face was priceless, needless to say she walked from us, and we just kept laughing.
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How about this one? We are moving to a large city and my sister doesn't want me to move, so she's trying to convince me that it's going to be hard to find a dialysis center there, when there's aboiut 40 of them there (I checked.)
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I told my co-workers on Friday that I found a match for a transplant and that she is starting the workup tests soon......YEAH!
They replied...... "I hope this is not going to take place over year-end as we are very busy then" "I hope you are not to long off work" "Is it really necassary?" "Why not wait until you get sick" "Does your husband know?" "Why do you need a kidney, you can go onto that machine or something? "
O my goodness..... I had so many things I wanted to say but was so stunned I could not think of anything......aaaaaahhhhhh.
ps... I am trying to schedule it over year-end ... hahahahahah
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I see your coworkers are a really sympathetic bunch, Des.
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Are they all related? How can so many people in one place be so ignorant! Good luck with the tests.
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Sounds like the best time to schedule it then Des, when it is very busy so they don't dump everything onto you :rofl; :2thumbsup;.
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Are they all related?
:rofl; Great question, Hanify!
Good luck, Des.
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I don't think they are all related.... (maybe? no) :)
I just think.... I don't appear to be ill.... on the outside... that is maybe why they don't think it is so serious. I don't act ill as well. Most days I put a fake smile on and just bear it.
I don't want to talk about my illness and only a handfull of people know the true state of my health.
All that said, I still expected a little bit more sympathy... Luckily the boss is totally human and sympathetic and he said whenever suits him. Thats all that matters.
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I have a quote I like to use for situations like that: "Do not mistake composure for ease."
True to myself, it's from the Vulcan Tuvok of Star Trek Voyager. ;D
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I have a quote I like to use for situations like that: "Do not mistake composure for ease."
True to myself, it's from the Vulcan Tuvok of Star Trek Voyager. ;D
I LOVE THIS!
Thanks
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I was taking a urinalysis class last semester and the teacher wanted volunteers to donate urine for us to do tests on. After class I told her I wanted to donate because I have kidney failure and she replied very enthusiastically, "Oh good!!" I realize she was just excited because we would get to see some interesting results, but I thought that wasn't a very well thought out response.
Just a few weeks ago I was in my hematology class after dialysis and someone asked what happened to my arm. I told him I had been at dialysis. He laughed and assumed that I had given blood for class. He said something along the lines of "You'll probably need to be on dialysis after donating so much blood for class" or something really stupid like that. Then after an awkward silence he asked what really happened to my arm. When I repeated that I had dialysis he just said "Oh" and walked away.
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Interesting reactions in both cases. I hope you took advantage of the opportunities to educate your teacher and your classmate. As I keep repeating, most people are not ignorant nor insensitive, but uneducated in the matter.
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Yeah, he probably turned the corner and then RAN to the closest computer to google "dialysis".
:rofl;
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I’ve had a few recently over the past couple of years - most harmless and uneducated (apart from the doctors!!)
From a (young ish) friend - "so after you’ve had you kidneys out, how long is it before they grow back"
From a doctor " they are massive (my kidneys) id love to have had these for my final papers"
I once was talking to a neighbor and he said "your putting on weight!", I then had to explain told him I had enlarged kidneys due to PKD he then said "that’s OK then I thought you weren’t looking after yourself". I walked off!!!
By a general doctor again “you’ve got lumps in your stomach feels like Hodgkin’s disease to me” when I told her I had PKD she said “what’s that?” - Frightening!
The ultimate however was when in 1985 when after being rejected on medical grounds from the RAF for reasons I didn’t understand or know about, a nephrologist told me (was 17 at the time and undiagnosed) that
“You have a disease and it will affect you for the rest of your life…” that was it!! I was then old to go and see my doctor.
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chalk that one up to dumb :sir ken;
In Biology and in Human Anatomy we read about dialysis and I showed my graft to a couple whowere grossed out. I don't lik my graft either, but common we have worked on stuff that is "more" gross than seeing skin with a tube pushing up and several scars. I guess dissecting a cows eye and squirting at you isn't so gross, or the smel of of a sheeps brain. Then again that didn't bother me either.
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I usually tell anyone who will listen that I need a kidney and am on dialysis. Most all of my co-workers know about me being on dialysis. Some ask questions like today a guy asked me how long do I have to do dialysis. I do it nine hours a night on a machine. He said "What? like two or three times a week." I told him every single night until I can get another kidney. He was genuinely horrified. I said yup...it's not fun but you do what you gotta do.
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Two remarks I will never forget that was said to me:
1 is you are to young to be so sick. I respond to them when they say that my illness you don't have to be old to get sick (I am only 47).
2 is your to young to be disabled, that was from two old ladies that saw my husbands locksmithing car in a handicap spot and she was gonna call the owner who is my husband. So we went over to her and and the other lady and asked nicely may we help them and she went on it is a commercial car in a handicap spot and my husband told her nicely his wife is handicap. Now I just show my graft in my leg and say being on dialysis and walking with a cane so I keep my balance isn't handicap I don't know what is. They just go away.
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What about ignorant things you have said to someone else? When I was changing from Haemo to PD I asked one day if I should 'get' a fistula just in case. (I'd used a catheter up till then) I had no idea at the time how much work goes into getting a fistula up and running! Not quite like going for a pint of milk at the shops.
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Our patient rep at my center has been on hemo for over 10 years. I knew he had received a transplant like 20 years ago and I told him that the only thing I was anxious about having a transplant was the catheter up my peepee. He told me a great story....When he was about to have his transplant he also had concerns about the catheter because he had never had one. There was an older guy he was talking to who said it was the most horrible thing he had experienced. Well, he went in for the surgery dreading the cath, and said it wasn't a big deal. So he went back to the older guy and said why did you tell me that it would be so horrible, it wasn't a big deal. Now get this...the older guy said, well I have never had one, I just heard they were bad! ::)
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Ohhh, but they are bad when you are awake and in the ER. Numbing meds do not help! Then there's the part when they remove it. YEOOOOW :o
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This conversation is starting to hurt...
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You know what I have been told so much lately that is just getting to me......
You don't look sick or you don't act sick....what the hell?
How do sick people act? It isn't like I have a cold, I do need to live life.
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You know what I have been told so much lately that is just getting to me......
You don't look sick or you don't act sick....what the hell?
How do sick people act? It isn't like I have a cold, I do need to live life.
My answer to that one is "Is there a uniform for sick that no one told me about?"
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Funny comment today...
My dh is at an out of state teacher conference right now. His co-workers pulled up tables and chairs outside of his hotel room and chatted with him while he dialyzed. (NxStage).
Lots of questions, curiosity on how dialysis works. Dh doesn't mind and feels that it's good for people to learn about this part of his life.
One question he told me had us laughing over the phone today..
One of the teachers asked ....where does the used fluid go?
dh: Down the drain.
teacher: Really??? You think it would be a biohazard!
DH: ummm, where does your pee go?
teacher: oh... down the drain, I guess... ummmmmm uhhhhhhhhhh
:rofl;
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I get the "You look healthy" comment, too. Last weekend a friend told me I look healthy and I'm still thin. Could someone please tell me the correct weight restrictions for kidney failure so I can correct this problem?
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My story isn't because someone was being rude, but someone was uneducated about transplants. I had a transplant last year and after the operation, my husband called my boss and told him that everything was OK. So the boss sends out an e-mail to my department. Then less than 48 hours later, the kidney was rejecting and I had to have it removed. So my husband again calls my boss to let him know. Now the boss sends out an e-mail to my entire department and tells everyone that I have to have the new kidney removed and they are going to put my "old ones back in"! I never laughed so hard in my life!
I guess that goes to show, people need to learn more about organ donation!
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Whoever started this conversation (long ago) was a genius! I'm reading the old postings and I can't stop laughing!!! This should be made into a book.......Kidney Failure for Dummies.......or something like that. Its truly amazing the questions people come up with.
One I can't stand is when someone asks me "what number" I am on the transplant list.
My husband had a friend who was paralyzed in Viet Nam. They were at the horse races one day and someone came up to him and asked him where they could rent a wheelchair. My husbands friend politely responded.........Viet Nam.
Whenever I'm feeling down, I'll, come back to this sting and read more of the replies. They will make me laugh! GREAT, GREAT topic!
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She asked.... How are your kidneys doing?
I said bad... the function dropped and the pain is very bad... she answered ... it can't be that bad you'r still working aren't you? Yes I am still working.
Not because I have a choice duh! I wonder how bad it has to get before they take it serious.
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man from church came to fix a leak and I told him about Lady Bird and he said she is only a dog ----
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that man from church needs a cross up his.......awww nevermind >:D
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It is hard not to think about what ignorant people say, and yet you need to try to. Just lilke friend here.
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On a recent fishing trip, a woman, when told I had ESRD and was on hemodialysis, told my husband, “Well, at least you don't have to make bathroom stops all the time when you're traveling.”
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Cat love your picture of your little asleep in the feed bowl.... that is too funny.... :clap;
A couple of days ago I went to my dentist who I have not seen a year or so and needed to get a dental check up and letter to clear me for transplant evaluation...... He had lots of questions as he was surprised with me having CKD...... He wanted me to make sure that I had both kidneys checked... and maybe one of the good ones could be used and get rid of the other bad kidney.......
oh boy....... I smiled and said well if I do lose both kidneys do you want to donate one of yours...... he just looked at me real seriously.... and said no I need to save at least one....in case one of mine fails too........ yes even the dentist doesn't really get it......
But he did remind me that I could of lost my kidney due to the toxic level of Novocain that I was given in 2005 by a dentist who was putting inplants in my mouth.... I almost died as he cut a artery and tried to patch it up and then proceeded and I bleed out in to my neck, tongue and could not breath anymore.... I had to have emergency surgery and I had to have a trek put in my throat.....and they told me that I almost died.... just for going to the dentist......the law suit was pretty good and I found out that this dentist was taught to do inplants thru a book and a conference..... no license...... guess you don't need one here in Oregon....... make sure you check these guys out....... cant trust anyone.....
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Cat, your post was funny. My sister in law teases me about that all the time, she calls me a camel. she has to stop to pee every hour or so. Of course, I know she's kidding, but I can see how some people are just clueless. May god bless them and keep them.
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Yup, los of function. It's not fun to realize it's affecting you too. Now I'm only peeing two or three times a day. When I went on a car trip to Las Vegas a couple months ago (about 6 hours, we hit terrible traffic a block from the hotel), I didn't have to have a restroom break until just before heading out to dinner after we got there.
As far as ignorant things, I don't know enough people that know about my kidney problems to have anything to contribute. My mother is pretty well-informed, except that sometimes she gets confused about which pills I'm taking.
I guess my father is a little annoying, always asking about certain foods, "Is that good for you?". And then serving whole wheat bread, cheese, and phosphate-loaded salami anyway.
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like I said, clueless. God may not have blessed us with good kidneys, but I think he's blessed all of us with an amazing amount of patience in certain situations.
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this woman told me that it was dialysis that was going to kill me and that if I went to a doctor that understood how life energy work instead of a nephrologist I would get better, because the problem was not my kidneys really it was the dialysis that made me sick ??? :urcrazy;
I really hate the "you are too young to be sick" and the "what did you do" just makes me want to fight!! :Kit n Stik;
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Wish I could remember what my oral surgeon said last wek that was really ignorant about kidney's and the pancreas. It was something so dumbfoundedly stupid coming from a surgeon who went to medical school too. I should have wrote it down at the time.
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I left my thermos cup at home and I asked for an empty styofoam cup -
the tech told me she could not give me an empty cup it had to have ice or water in it
fine, give me a cup of water and I can pour it on the flour :stressed;
I never got the cup >:(
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My own dear mother asked me on Sunday if I was still doing dialysis. :rofl; :rofl; :rofl;
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My own dear mother asked me on Sunday if I was still doing dialysis. :rofl; :rofl; :rofl;
Oh dear, she does not get the whole dialysis thing, huh? :urcrazy;
Or did you sneak in a transplant when know one was looking. :o
Aleta
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I was asked what the initial problem that lead to dialysis was... I replied "congenital nephrotic syndrome" - then the doctor said "when did he first get it?"..... this was at an A&E when my son was 12 months old and the hydroceles needed repair due to PD fluid leaking downwards... and this was a senior pediatric doctor... then they checked for relapse of nephrotic syndrome!!!!
Do you need to be a doctor to understand that you can't possibly have a kidney condition without kidneys???
We also have issues when people ask for urine samples.... (is it that complicated? no kidneys means no urine, surely you learn that when you train to be a nurse...)
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I really hate the "you are too young to be sick" and the "what did you do" just makes me want to fight!! :Kit n Stik;
Also "too young to be sick"
And I hate it when someone older than me says "Just wait till your old" I mean wouldn't it be rude of me to say "Just wait till your sick" ?????
Girl
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My chiropractor talks about healing my kidneys every time I see him. He wants me to take some sort of pill that he thinks will make my kidneys better. He said that if I didn't have any kidney function I would be going to dialysis more than three times a week. (I have had one kidney removed and the other one is so small they couldn't find it on an ultra sound. I have told the chiropractor several times.)
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My husband (the dear) received a call for a free massage. He arranged it as a surprise for me last night.
The lady arrived at our house and she actually sells a Ozone bubble bath thingy with a machine that "clears" the air.
She started off with a questionare to establish existing diseases and problems. My kidney problems was mentioned and she said ..:" My dear, you should have contacted me a year ago already... I would have fixed your kidneys up for you but now we can at least reverse the damage"
OH! now that got my feathers ruffled........... Now I have found another cure (besides sauna's :)) have a Ozone bubble bath people!!
needless to say, I sent her packing VERY quickly.
Oh just by the way it treats Aids as well.........
She knocked on the wrong door.... we ain't no idiots :)
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She started off with a questionare to establish existing diseases and problems. My kidney problems was mentioned and she said ..:" My dear, you should have contacted me a year ago already... I would have fixed your kidneys up for you but now we can at least reverse the damage"
OH! now that got my feathers ruffled........... Now I have found another cure (besides sauna's :)) have a Ozone bubble bath people!!
needless to say, I sent her packing VERY quickly.
Oh just by the way it treats Aids as well.........
She knocked on the wrong door.... we ain't no idiots :)
:rofl; :rofl; :rofl; :rofl; :rofl;
My neph ran into me at the hospital getting my blood drawn 2 weeks after transplant. His exact words:
"So do you miss dialysis?" umm...no, I can't say I do..... "Good, because they already gave your spot away!" umm....cool?!?
OR the person that asked my mom how long it would be until we knew my transplant was good (like when you have cancer and go into remission). my mom's response? "Never..."
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That the term Indian Giver is actually supportive of Indian people and means the opposite of what you think it does. lol
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That the term Indian Giver is actually supportive of Indian people and means the opposite of what you think it does. lol
:rofl; :rofl; :rofl; :rofl;
Oh Hanify. You are too funny!
:clap; :clap; :clap;
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That the term Indian Giver is actually supportive of Indian people and means the opposite of what you think it does. lol
Actually it shows your ignorance to the other definition to this word and your ignorance in how it can apply in this country.
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Feeling a little grouchy Big Sky????
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Stay on the topic please.
"Dialysis: General Discussion - Ignorant things people have said to you"
okarol/admin
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While talking to a friend the other day about the man who had the wrong kidney removed, she said, " now he has to go on continuous dialysis" I said, why? She said, he has no kidneys!!!! What could be the difference in having no kidneys or two that dont work?
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but didn't one of the kidneys work and they got the wrong one?
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Jean, sorry, I do love you but that makes perfect sense to me. lol.....
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I went to a GI doc Thursday because he had been doing test from one of my hospital stays. I asked a couple questions about previous test result concerns I had and quoted what he told me then. He goes through my chart and can't find the test results and then says they we're normal. His eyes and facial expression show he didn't find them and that it was a complete 180 from what he told me before. So he tells me that he can send me to the city for further testing since he has no further input (No thank's I'll talk to my transplant hospital myself!) and then ask if I need any prescriptions. Heck, you never wrote a prescription for me in the first place and why now when your telling me I don't need to see you unless there are problems. I felt like saying sure, give me some oxycotin, vicodin, norco, etc, I think I can find a buyer and make a few bucks! :banghead; :Kit n Stik; And the idiot can't read my chart right! Still only thought I had a kidney transplant and yet my chart and copy of my med listings have kidney and pancreas transplant, so quit asking me about insulin and blood sugar throughout the day :Kit n Stik; :Kit n Stik;
I'm not going back to him!
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Damn Chris, That downright scary. Good decision not to go back to him.
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OH! now that got my feathers ruffled........... Now I have found another cure (besides sauna's :)) have a Ozone bubble bath people!!
What if I brought the Ozone Bubble Bath into the sauna?
Think about it
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OH! now that got my feathers ruffled........... Now I have found another cure (besides sauna's :)) have a Ozone bubble bath people!!
What if I brought the Ozone Bubble Bath into the sauna?
Think about it
Don't forget the magnets there Marc :2thumbsup; :rofl;
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"You look like you feel really bad today", said to my brother at Panera shortly after a quick trip outside to lose his breakfast.
A. No he didn't look like he was feeling really bad.
B. What does one say to that - I am, thanks for noticing. I'm not, but thanks for letting me know I look like that. (There's always my answer - Go **** yourself, but my brother is vastly nicer than me :angel;.)
:bow;
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Oh, Alene,
There is nothing one wants to here more than "Gee you are looking bad!" :sarcasm;
Sorry Rolando had a bad morning at Panera.
:flower; :flower;
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same thing said to me this week. My answer was, "thanks for your concern." Then she says, what can I do to help? My answer was, "thank you, I'll be fine in just a few minutes".
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Oh, now that comes across so much nicer. What a caring lady. She must have seen right through your "ugly" exterior to the beautiful person inside. :thumbup;
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"You look like you feel really bad today", said to my brother at Panera shortly after a quick trip outside to lose his breakfast.
A. No he didn't look like he was feeling really bad.
B. What does one say to that - I am, thanks for noticing. I'm not, but thanks for letting me know I look like that. (There's always my answer - Go **** yourself, but my brother is vastly nicer than me :angel;.)
:bow;
Had nurses tell me that, send me home then have me come in the next day to have me admitted to the hospital. Gee thanks for that real concern, could have told you that without waiting for a blood test. Transplant Clinic sure doesn't get the cream of the crop of RN's!
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My in-laws go to some goofy "doctor" that can diagnose and heal you through "touch" (and some very costly vitamins). I think they are all crazy. Just yesterday day she said it was too bad I didn't believe in Doc Merdoc because he could cure my kidney failure.
So if "doc" is some type of miracle worker then why does her husband still have diabetes, her grandson have cerebral palsy , her daughter have seizures and my sister-in-law still have problems with vertigo????????
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Thie is only my personal opinion:
But Goofy, these kinds of goofy "doctors" are really called "charlatans" and probably less goofy than criminal.
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I almost hate it more when they say, "well, you look pretty good." maybe i should always look like death warmed over, right?
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My in-laws go to some goofy "doctor" that can diagnose and heal you through "touch" (and some very costly vitamins). I think they are all crazy. Just yesterday day she said it was too bad I didn't believe in Doc Merdoc because he could cure my kidney failure.
So if "doc" is some type of miracle worker then why does her husband still have diabetes, her grandson have cerebral palsy , her daughter have seizures and my sister-in-law still have problems with vertigo????????
i'm so sick and tired of these 'we create our own reality' jerks. :Kit n Stik;
they're all so 'spiritual' until THEY get sick. tell them that there has never been a case of kidney disease cured by ANYONE, ANYWHERE, EVER.
i had a cute conversation with my neph's secretary. she's also a nurse, of sorts... ;)
i had called his office to ask if he would consider changing my blood pressure meds to another product beause the one he had me on dried out my lungs and made me very sick when i contracted a serious flu. i'm certain it was the swine flu, but never did get it diagnosed. all the symptoms were there and it lasted for a month, taking two weeks of antibiotics before i was feeling that i might survive it. anyway, i told her i had been researching 'atacand' - the med they had me on. i also expressed a concern for my residual kidney function and asked he if she knew if the atacand had any detrimental effect on that.
she replied, 'we really aren't that concerned with residual kidney function, once you're on dialysis.'
i'm glad i was on the phone and not face to face with her. i wanted to ask if she would be concerned if they were HER kidneys?
:boxing;
the comment was doubly troubling beause when i was on hemo, the big 'selling' point to getting me to switch to P/D was 'P/D helps to maintain residual kidney function longer than hemo does...'
it seem that once they have you where they want you, their concern diminishes rapidly.
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Ok...I have a couple for you. The other day I went to my PCD because i wasn't sleeping at all. She gave me some Ambeien. Anyway...when i first went into the exam room one of her nurses came in and took BP and all that stuff. She was asking me what was wrong and i told her I wasn't sellping...then I told her I am still on dialysis and she siad "Really??? Why don't you just get a new kidney??" Why didn't I think of that??? Just go get a new kidney. LOL
I think she ment to say 'Are you on the transplant list to get a new kidney'
Also here at work i was in the break room complaining of being a little tried....my co-worker (who nows about my dialysis) said "Yeah....you do look a little yellow today." Lordy!!!!
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Like yourself I am a wheelchair user however I cannot speak from your seat as I am only an advocate for my partner who is waiting for transplant. It is our hope that should he have to go the dialysis route first that I can be the careprovider for his at-home dialysis. It is amazing when I reflect at the comments that have been made by physicians when my role of being a caregiver comes up. It hurts to the core. They have a way of making my ability challenges into disabilities!
I have also been denied the privilege of being the kidney donor --- due to the fact that I have a bleeding disorder - one that is not life threatening and with the right chemicals re-operatively it would not present a problem. This development has also been a burr under my saddle as I so much want to be the donor. Again - the sensitivity of the process has found another sore spot.
Another physician refused to support my wishes as a donor on the basis that the surgery would set me physically back for many months. She was of the opinon that the nephrectomy would be the radical approach and as much as referred to my lack of scope of the subject. She insisted only the removal of the diseased kidney would be by the laparoscopic approach...and that I should do my homework before offering a major organ !! It hurts!!! In essence she is the one in need of information.
Everlasting
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I cannot type today for some reason. ::)
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"You live to exist not exist to live!"....said by an occupational therapist!
Everlasting
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Everlasting, I hope you said something to that doc regarding that remark. She needs some :Kit n Stik; or :banghead; sense into her.
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OH! now that got my feathers ruffled........... Now I have found another cure (besides sauna's :)) have a Ozone bubble bath people!!
What if I brought the Ozone Bubble Bath into the sauna?
Think about it
Brilliant!!!!!! I didn't think of that!
heheheheheh
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My mother is one of those natural health people and she said the I have not gotten better from my kidney failure because I don't truly believe that it's possible to heal completely. WTF? I love my mom dearly, but she's not a doctor and kidney failure is not something you can 'think and believe' your way out of.
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My mother is one of those natural health people and she said the I have not gotten better from my kidney failure because I don't truly believe that it's possible to heal completely. WTF? I love my mom dearly, but she's not a doctor and kidney failure is not something you can 'think and believe' your way out of.
denial comes in many forms.
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I had applied for work and requested that I work indoors during summer because of the fluid restriction....one of the other employees turned and said, "it can't be that bad, it's not like it cancer or something". I didn't know what to say.
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Or this classic....: I know what your going through"
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im 30 yrs old but im disabled so i have a disability placard and one day i parked in a handicap stall put my placcard up and this man told me he was going to call the police because i wasnt really handicap!!! i was so shocked i couldnt respond to him. i may look healthy but people dont know whats goin on with us on the inside..
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That's when you whip out your fistula and buzz him with it.
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That's when you whip out your fistula and buzz him with it.
:rofl; :rofl;
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My fistula doesn't buzz. Does that mean its not yet ripe?
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Listen with a stethescope Dan. If there's no buzz you need to see your vascular guy/gal.
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Ok, that's what you mean? I can hear it if I kind of put my head close to it. First I couldn't figure out what it was. Just had it looked at Thursday cause they couldnt "stick" (somebody teach me to spell cannulate. its not in spell check) it right all the time. They say it is perfect and everybody got yelled at.
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Some techs if you ask them will let you use their stethescope to hear your fistula along with teaching you something. I ended up buying my own stethescope for the heck of it.
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I was given a plastic stethoscope by Kaiser once after graft surgery.
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I couldn't believe what they did with that little camera up my veins. Reminds me what they stuck up my... in my... oh, forget it.
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Haveing experienced a camera up and down, I can assure you that having a camera stuffed up your ... is much to be preferred to having one stuck down your throat.
Not the same one, of course...
:rofl;
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First time they did that post tx, they tell me to relax! Yeah Right! Me relaxed while something going where something shouldn't and your telling me to relax? Get on the table and you be the patient! They finally put me to sleep for that and on each one ever since on both ends.
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Must be nice not to have to work!!
Um. no.
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Some of you may remember my rant about my husband's uncle who brined the turkey the T-giving I was on dialysis. Well, his (uncle's) mother is now on dialysis. The day of her 100th session, they "celebrated" with balloons and party hats at dialysis (his idea, I feel certain) and dinner out. His mother is a very bright, alive, "with it" woman, who I can't ever see wearing a party hat!
Now he's bragging (on Facebook) about her "normal" labs. I wonder if he realizes that's a relative term??
Then he told everyone what a great guy he was by taking cheesecake to dialysis for all the patients - made with splenda so the diabetic patients could have it too.
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I couldn't believe what they did with that little camera up my veins. Reminds me what they stuck up my... in my... oh, forget it.
I know what you mean..............I just had that same procedure done twice in the last 2 months and it hurt like H***!!!!
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Normal people, just plain SUCK!!!!!!! How bout the #1 Question???? How do you feel????? Well lets seeee how do you think i feel I take meds everyday feel nauseas every morning I wake up and have a tube aka Catheter sticking out of my body!!!!!! What do you think??? I FEEEL FANTASTIC JUST ECSTATIC!!!!!!
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Normal people, just plain SUCK!!!!!!! How bout the #1 Question???? How do you feel????? Well lets seeee how do you think i feel I take meds everyday feel nauseas every morning I wake up and have a tube aka Catheter sticking out of my body!!!!!! What do you think??? I FEEEL FANTASTIC JUST ECSTATIC!!!!!!
I would have thrown in a Fricken Fantastic as a good measure :rofl; ;D
I hate that question to and the thing is they really don't care or want to hear about it. In their head they are going how to I make a quick exit because I really don't want to hear.
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Normal people, just plain SUCK!!!!!!! How bout the #1 Question???? How do you feel????? Well lets seeee how do you think i feel I take meds everyday feel nauseas every morning I wake up and have a tube aka Catheter sticking out of my body!!!!!! What do you think??? I FEEEL FANTASTIC JUST ECSTATIC!!!!!!
I would have thrown in a Fricken Fantastic as a good measure :rofl; ;D
I hate that question to and the thing is they really don't care or want to hear about it. In their head they are going how to I make a quick exit because I really don't want to hear.
If you really want to know...On a good day I feel like crap. Today is not a good day.
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What do I do when they ask? I actually tell them. There's no worse punishment for having asked that question without meaning it, than being told all the messy details about what's wrong with your life.
"Hi Matt."
"Hi."
"How are you doing?"
"Oh, not bad, I'm constipated again so I've been taking laxatives. And you should see what parts of me have been swelling up the past week. And the nonstop itching, all over. I'd go on, but my blood pressure's low and I need to sit down."
"... Nice to see you again"
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Good one Restorer. :thumbup;
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Restorer, I loved that post, I bet when you had finished saying all that, they said "so you are ok then". I love it. :clap;
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The terrible thing about this thread is that I keep racking my brains because I'm pretty sure I've been the person saying some of these things before I got sick....oh dear!
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The terrible thing about this thread is that I keep racking my brains because I'm pretty sure I've been the person saying some of these things before I got sick....oh dear!
I think it's safe to say that most of us have been that person, too, before we became ill.
8)
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hmmm...so you don't like it when a 'normal' person asks how you feel? But I do ask, and I do care. I don't ask people I dont give a shit about........I give a shit about you guys..... >:D >:D >:D
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Glitter, please don't give a shit, it's getting smelly over hear. Not sure if it's beter than not giving a rat's :sir ken; though. :rofl; :rofl; :rofl;
I don't have an ignorant thing someone said, but sure do have something ignorant thing someone did during oral surgery today, and it wasn't me. Nurse kept sneezing into her arm as I was being worked on, no mask on, just gloves and she knew I was immunesuppressed. Now waiting to get sick from that. Might be hard to tell right now though due to pain
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My friend told her husband that she wants a divorce. In a scramble to keep her he told me "I'd give you a kidney if you were dying".........
WTF? :Kit n Stik;
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Most people can't stop staring at my fistula which is on my left upper arm and hard to miss when I'm wearing a T shirt. Some people however ask me, "What happened to your arm?" I usually respond with a "Nothing happened. A surgery was performed here to connect the vein with the artery to help with my dialysis."
When I'm in a devilish mood however, I look at the fistula and scream, "Oh my god, get an ambulance, quick!"
Also, people often ask me how often I dialyse. When I say every night, they ask, "Every night! Why do you need to dialyse every night?" I then get into the "Kidneys work 24X7. So, dialysis which is replacing kidney function, must also be done (ideally atleast) 24X7. But I just do it six nights a week, 7 hours each night!
Kamal
http://kamaldshah.com
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kamalshah20, excellent. you are explaining to people. i've always said they are not ignorant but unedcucated on the subject.
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"So when do you get to stop taking the meds"
"So when will you be considered "cured?"
"Oh, so when you stop taking the meds your immune system will come back, right?"
Or my favorite right now...I went to get my yearly echo...the PA saw my list of meds and commented on it. I replied I got a transplant at the beginning of July. Her response "oh, if you don't mind me asking, which one?" "Pardon?" "Which side? Which kidney?" The PA didn't know they put them in front...and normally leave the old ones in....oi vey!
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My friend told her husband that she wants a divorce. In a scramble to keep her he told me "I'd give you a kidney if you were dying".........
WTF? :Kit n Stik;
WTF?
More like: WTF?
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When I'm in a devilish mood however, I look at the fistula and scream, "Oh my god, get an ambulance, quick!"
Kamal
http://kamaldshah.com
I love your sense of humor! :rofl;
I have told people that the thrill in my fistula was the new cell phone implant I have and the ringer is on vibrate. I then touch my ear and say hello?. Uh, must have hung up!
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Had wisdom teeth taken out Monday and head surgeon was asking about my transplant. He asked if I got a partial pancreas? WTF They stopped that experiment years ago due to high failure rate and risk to donor.
Then he goes on and ask me what my blood sugar was. So I say 86 and he say's that's to low :o ??? WTF, to low for whom with a working pancreas? So I wasn't in the mood and had to tell him what I thought after all, I have had this transplant for 9 years moron!. He finally left and let the other doctor begin the procedure, which was better. She was better to look at :shy;
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You don't look sick, so it's not that bad
Are you pregnant/when are you due? (I'm sorry but unless you know someone is prego you don't ask, but I love the look I get when I say "No, it's just my kidney")
You look good today (I looked like crap before?)
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During a conversation with my friend about her pregnancy: "I'm so tired...now I know how you feel"
This is the same friend who mistakenly, still after 3 years, asks how my "chemo, oops I mean dialysis", went....
Insulting to dialysis patients, chemo patients and pregnant women everywhere!
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I have told people that the thrill in my fistula was the new cell phone implant I have and the ringer is on vibrate. I then touch my ear and say hello?. Uh, must have hung up!
:rofl; :rofl; :rofl; :rofl;
I hate it when I go out and people that know I'm on fluid restrictions ask me if I want another beer.
Especially if I came off heavy in the morning, some of my mates still don't understand how hard it is not to drink too much.
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I hate it when I go out and people that know I'm on fluid restrictions ask me if I want another beer.
Especially if I came off heavy in the morning, some of my mates still don't understand how hard it is not to drink too much.
The answer is to say "I can't drink another beer, but I can have a double Scotch — thanks!" or whatever expensive spirit you fancy. You'll be surprised how quickly they will start to understand. ;D
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I had someone look at my Fistula and say "wow do you have a garden hose in your arm?"....I replied "just had it installed last week...makes watering the flowers so much easier".
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Staceyandjoe... i love it. I'll have to use that when mine heals if it's ok. so far with all the scars across my tummy and now my arm I tell people I had a fight with freddy kruger. When i was working people used to get up off their seats becuase they though i was pregnant, one girl went so far as to argue with me when i told her i wasn't pregnant, took ten mintues and a co-worker to really get in her face for her to conceede defeat and walk away mumbling 'i still think she's pregnant!'
I think the worst some-one ever said to me was 'it's your fault your kidneys failed the 2nd time, you didn't drink enough water!' :Kit n Stik; WTF the only reason he still stands is becuase he is close to the family.
Or.. just before i gave up work i had bad night, you know where you get those shocking leg cramps to the point where it actually leaves you in pain for the next day and bruising to the ankles. I rang work and said I wouldn't be in 'God, are you sick AGAIN!' then when i gave them the note saying 'sick due to renal failure complications' the managers eyes just rolled 'if you're sick much more often we'll have to give you a written warning'. Hmmmmm... could you send a copy to my kidneys, they really need a kick up the :sir ken;
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my main nep doc, at dialysis Monday, said to me to drink plenty of fluids with the flu --
I said "ALRIGHT!" :pray;
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"I made this pizza just for you- I used lots of tomato sauce so it'll be high in potassium and good for your blood pressure, whole grain dough, and non-fat cheese! So it's low calorie and you can eat it!" Then she pulled out the Coke Zero.
:banghead; It may be low calorie, but how high is it in everything I can't eat?
As upsetting it is when people don't understand, I try to remember- they just aren't educated. No one is trying to drive me crazy- that's just the way it's working.
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One thing though, i just love the open honesty and innocence of children.
I took my son to his swimming lesson tonight and a little girl, maybe 7 at most walked straight up to me, looked quizically at my arm "what's that?" I explained that i'd had surgery and the dr joined the vein to an artery. I showed her the thrill "that's cool! what makes the buzzing?" a moment later she spurts back "i know its the blood rushing past realy quick!" when she asked what it was for i was slightly troubled how to explain renal failure so i went for the old... part of my body doesn't work properly so the dr needs this to help fix it and i pointed to my kidneys. Tell you, this little one was quick..... "If its not working there (pointing to the kidneys) then why did the put it there (wrist)?" a few adults around us looked horrified for me, you know oh that poor woman how embarrassing for her...
I just love kids, i'd much rather them walking up and asking all the wonderful questions they can think of than a single adult staring at me for an hour. There is no malice or anything from them just pure wonder.
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Wish we all could see things like a child. What a great conversation! :2thumbsup;
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The worst thing somebody told me is that when I asked my friend about this lady I like he replied "she would never date somebody like you" and I was like why " because she is beautiful and successful and you are a dialysis patient with no job...etc,etc and she can have any guy she wants why should she ever choose you!" After he told me that I was like WTF? In all respects it motivated me to try and speak and develop a friendship and I've asked her out a few times with not a "no" but an excuse on why she cant go....she has a boyfriend so I have to wait and see but overall I think I might have a chance and plus I'm pretty persistent!!
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I am sorry but your "friend" is also a jerk, I mean who would ever say that to someone that you could tell was sick...
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When my daughter, Sarah was in grade school this one boy called her " diseaser". I never knew about this until later in life. There were probley other instantaces but I'll never know. I just know when I see this boy that is now 27 years old I still have no respect for him.
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I laughed when someone asked me if I had batteries in my fistula and if I had trouble going through security at the airport. :rofl;
Sico, yes the beer thing is tough. I had this whole conversation with guys at work once about it (and I was trying to not go on about my condition because I don't want this whole charity case complex or anything..) but these guys just wouldn't get it.. specially one guy (a Collingwood supporter, so you'd understand :rofl;) said oh so you can't have many beers.. so just drink cokes!!! Then when i explained it wasn't so much WHAT it was, but how MUCH I still don't think he got it..... Still the boss understands that when I have a vodka at lunch(when we go to the pub) it's not because I want to get more pissed than the beer drinkers! :rofl;
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Sico, yes the beer thing is tough. I had this whole conversation with guys at work once about it (and I was trying to not go on about my condition because I don't want this whole charity case complex or anything..) but these guys just wouldn't get it.. specially one guy (a Collingwood supporter, so you'd understand :rofl;) said oh so you can't have many beers.. so just drink cokes!!! Then when i explained it wasn't so much WHAT it was, but how MUCH I still don't think he got it..... Still the boss understands that when I have a vodka at lunch(when we go to the pub) it's not because I want to get more pissed than the beer drinkers! :rofl;
Yeah Richard i really have to stress it's not what i drink but total volume of anything liquid.
Some people with functioning kidneys will never understand.
One of my mates actually said to me "can't ya just drink through it". He's answer to everything is another beer though. :Kit n Stik;
And no he ain't a Collingwood supporter.
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When I was in hospital recently a doctor (not a renal doctor or I'd have reported him) said "Now, you do PD is that right". I dutifully said yes "How long since you last dialysed?" I looked at him for a moment wondering if he was serious, and one of the other doctors said - no - it's PD she'll be doing it all the time".
AND, yesterday at the dentist (who, to be fair knows I am sick, but probably not that I'm on dialysis) said 'do you ever have a dry mouth?'. Not his fault really, but it did make me giggle.
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Pamster, I dealt with asthma when I was a kid. I had a neighbor kid tell me that their perents said they couldn't play with me cause I was catchy.
Last night I went to the ER to placate mom on my BP. the nurse there told me to drink plenty of fluids. I just told her I couldn't, I am on dialysis. She said...Oh, yeah..... If only....
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last week i attended an access clinic and was asked when i turned up for blood tests and sample urine.
When i told the receptionist that i had no kidneys, so no urine test, she said "if you dont give a urine test i cant book you in, so go and have a drink and wait and see what happens"
I just couldn't help myself and said "what do you reccomend i drink for my kidneys to grow back" :rofl;
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"what do you reccomend i drink for my kidneys to grow back" :rofl;
Classic!
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"what do you reccomend i drink for my kidneys to grow back" :rofl;
Classic!
:rofl; Whiskey, Frank
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it is funny to see the many levels of ignorance people will show with or without paying attention on whats going on!
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And this was in a clinic where you went to talk about a fistula?
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Was she blonde?
Aren't you glad she was only the receptionist?
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Every time I go in for access repair surgery, and the nurse checks me in - they always ask for a urine sample. I always reply - well, if you want a urine sample, then you guys are gonna have to perform a much more major surgery, chuckle, chuckle.
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Was she blonde?
Aren't you glad she was only the receptionist?
No Dan, not blonde, probably just old!!! (I'm just yanking your chain by the way and defending my blondeness which is also aging as we speak. LOL)
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Touche.... Blonde jokes are funnier than old jokes...lol Or perhaps that depends on whether you are blonde or old!
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My neice (who is a brunette) used to make up her own blond(e) jokes but they usually featured guys, unless of course other body bits were important identifiers of gender.
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Was she blonde?
Aren't you glad she was only the receptionist?
No Dan, not blonde, probably just old!!! (I'm just yanking your chain by the way and defending my blondeness which is also aging as we speak. LOL)
I'm defending my blondeness too Dan!!! Watch what you are saying or Monrien and I will gang up on you!! (Just joking) LOL!!
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I give up... Hey, that's just an "ignorant thing I just said"...
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My poor hubby wants to take the doc "on" because he just can't fix me...... I think he now finally gets it ... I can't be fixed just assisted to feel better. He wanted me to see another doc... heheheheh
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I haven't had any negative comments about the decision to administer dialysis to our disabled daughter until I joined here.
:sir ken; and this has got to be one of the most pertinant Smileys I have found in response to those ignorant comments.
Geesh. Only here a few days. Could be I came to the wrong place.
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I think your sincere and moving post regarding your daughter may have temporarily removed the spotlight from some very needy people. Hopefully we can all add a little more Decorum to our posts.
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My "Top Two" from the last few months -
First runner up was the surgeon I talked to after the first 3 weeks of no food or water, only IV nutrition. She asked if I had any appetite. I said yes, I was constantly hungry and my stomach growled all the time, to the point that the hunger kept me awake without the pain pills I took to knock me out enough to sleep. Her response? "Oh, that's wonderful!" Okay, I know having an appetite is a sign of good health, but what's wonderful about being miserable?!
First place goes to the resident who came to see me after I was starting to recover from the last revision surgery. He was born and raised in Japan, a culture that apparently is a bit more direct during conversation than the typical American expects. His greeting to me - "You are looking much better now. None of the surgical team thought you were going to make it." Gee, thanks for the vote of confidence! I hadn't at that point realized how close to death I had been - after all, I was unconcious for that part!
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I'm glad you proved them wrong!
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My "Top Two" from the last few months -
First runner up was the surgeon I talked to after the first 3 weeks of no food or water, only IV nutrition. She asked if I had any appetite. I said yes, I was constantly hungry and my stomach growled all the time, to the point that the hunger kept me awake without the pain pills I took to knock me out enough to sleep. Her response? "Oh, that's wonderful!" Okay, I know having an appetite is a sign of good health, but what's wonderful about being miserable?!
First place goes to the resident who came to see me after I was starting to recover from the last revision surgery. He was born and raised in Japan, a culture that apparently is a bit more direct during conversation than the typical American expects. His greeting to me - "You are looking much better now. None of the surgical team thought you were going to make it." Gee, thanks for the vote of confidence! I hadn't at that point realized how close to death I had been - after all, I was unconcious for that part!
Oh JBeany - I am laughing reading this - I'm sorry!! I had lots of doctors when I was sick come to talk to me, and they'd look at my notes and look at me, and look at my notes and look at me then they'd say "Wow, you look amazing compared to what's down here!" Ha ha ha ha.
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I haven't had any negative comments about the decision to administer dialysis to our disabled daughter until I joined here.
:sir ken;
That is the reason this post was started, I think.... so that everyone can reallise..... the things people say are from ignorance and not vindictiveness...... No one knows ones circumstances.
You hang on to you lovable, wonderfull and very special daughter.....
hugs
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Within the past couple of months, I have undergone 2 revision surgeries to my graft, each within 3 weeks of each other. I had one 3 months before that, and another 3 months before that one.... Obviously, I'm tired and frustrated with the surgeries, but doing what I have to do. My mother called me a couple of weeks ago to see how I was doing. She asked me if I was going to schedule a kidney transplant within the next year. LOL!! Yeah - that's all I need to do, schedule it! Why didn't I think of that?
Anyhow, I explained to her for the millionth time that I was not eligible yet for the transplant and gave her a brief list of the reasons (lose 40 lbs, dental work, yadayadayadayada). Not only does she not hear me, but she just thinks I'm being stubborn in not getting a transplant. Geesh! Then, she asked me - "Well, how much longer can you do this?" ('this' - being dialyis). How does one answer that? I just told her, I don't know, as long as God is willing. It's not like I have a choice!! Well, I guess I do, but the only alternative is death, which I'm not ready for yet. Seriously, how do you answer that question? The question really upset me, because it's a question I'm faced with every day, but don't want to answer. My hubby, who doesn't like it when my mom upsets me told me I should have just answered - 63 days, and that's it!
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I haven't had any negative comments about the decision to administer dialysis to our disabled daughter until I joined here.
:sir ken;
That is the reason this post was started, I think.... so that everyone can reallise..... the things people say are from ignorance and not vindictiveness......
No one knows ones circumstances.
You hang on to you lovable, wonderfull and very special daughter.....
hugs
"No one knows ones circumstances".
And this is exactally why one should be sure their brain is in gear before opening their pie-hole.
Thanks, Sir Ken!
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Greeting Javaseuf,
I'm real new to this site too. I'm very sorry about the mixed reception you got.
The stupidest thing ever said to me was about a month ago. My nephrologist responded to my request for help with finding information on all aspects of dialysis was "Journal articles are for us not you! Go to Kidneypatient.com".
This Monday I meet my new nephrologist.
Joe, disgruntled cat.
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My mom was over the other day. She gave me a kidney over 17 years ago.
She walked into my bedroom and saw all my Baxter supplies and asked me "Whats all that for??" I'll give you one guess mom. ::)
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Javaseuf, I am sooo sorry that you feel that way, but I do understand. Whatever you decide to do, remember that you and your family will always be in our hearts and prayers. You are wonderful and amazing parents. You dont need any one to tell you what to do, but we are here just to listen if you need to rant, or have a really bad day. Or to cheer you on when you have a good one.
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:Kit n Stik;
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:Kit n Stik;
My head nephrologist said I should get a transplant so we can see what happens and observe like a guinea pig. Two years ago he said that I had no chance for transplant. I double check with the doctor that cares about me and he said that I have a 5% success rate and he does not recommend transplant. I wanna invent something called the "SLAPPER" and smack the crap outta my head nephrologist use me as a guinea pig.......NO WAY BUDDY!! I feel like a piece of meat ready to get cut up after that!!
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omg. 'what is up w that doc?'
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Have to vent. I have taken a lot of pride in the fact that I can walk again after being told after my accident that I would not be able to. I get around with difficulty but I do so because I prefer the freedom I have. At dialysis Saturday, when I was preparing to leave the clinic, a tech who was helping me get up from the chair said, "Do you have a wheelchair at home? Why don't you use it instead of going to all this effort to walk, it would be so much easier." All I could think of to say, at the time, was "The effort is worth it, to me."
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It's rather sad that the tech even said that to you. Maybe the tech was just thinking about himself and it's just easier for him if you used a wheelchair. Keep up the good work and walk every chance you get!
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Within the past couple of months, I have undergone 2 revision surgeries to my graft, each within 3 weeks of each other. I had one 3 months before that, and another 3 months before that one.... Obviously, I'm tired and frustrated with the surgeries, but doing what I have to do. My mother called me a couple of weeks ago to see how I was doing. She asked me if I was going to schedule a kidney transplant within the next year. LOL!! Yeah - that's all I need to do, schedule it! Why didn't I think of that?
Anyhow, I explained to her for the millionth time that I was not eligible yet for the transplant and gave her a brief list of the reasons (lose 40 lbs, dental work, yadayadayadayada). Not only does she not hear me, but she just thinks I'm being stubborn in not getting a transplant. Geesh! Then, she asked me - "Well, how much longer can you do this?" ('this' - being dialyis). How does one answer that? I just told her, I don't know, as long as God is willing. It's not like I have a choice!! Well, I guess I do, but the only alternative is death, which I'm not ready for yet. Seriously, how do you answer that question? The question really upset me, because it's a question I'm faced with every day, but don't want to answer. My hubby, who doesn't like it when my mom upsets me told me I should have just answered - 63 days, and that's it!
Just schedule a transplant! :rofl; :rofl; :rofl;
You must be so sick of explaining to your mum why you aren't on the waiting list yet.
If i have to repeat myself a few times and still get asked stupid questions, i give stupid answers. :2thumbsup;
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It's rather sad that the tech even said that to you. Maybe the tech was just thinking about himself and it's just easier for him if you used a wheelchair. Keep up the good work and walk every chance you get!
Thanks for the comment. It was a woman,and she didn' have to help me up but was tring to be helpful.
I was concerned about posting this as it wasn't directly associated to dialysis.
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I'm a wheelchair user... I was ringing around dentists surgeries to find a practioner... One receptionist said "Yes, of course we're Wheelchair Accessible. Would you like me to book you an appointment???"... I was delighted, and answered in the affirmative...
On the morning of my appointment, I rolled in the door and to reception... After going through the paperwork she told me to "take a seat"... Couldn't resist answering "I have one"... Anyway, once everyone in the room stopped laughing she said "The dentist will call you upstairs shortly"... I looked at her and asked where the lift is... She said "We don't have one"... I replied "But when I spoke to you over the phone, you said that you're Wheelchair Accessible"...
Folks, I tell you no word of a lie, she replied in total seriousness "We ARE Wheelchair Accessible. You got in here didn't you???"... :urcrazy;
I won't tell you what my reply was... Not repeatable in polite company!...
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What a dolt, the receptionist that is. I can't walk up stairs, my ankles don't work and even if they did it would still be hard. So, I have to take the ramps and elevators (or lifts) too. Hope you are able to find a place that fits your needs.
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Thanks Fc....
Thankfully, I'm now a patient at the Dublin Dental School and Hospital now... Never been happier!...
Oh and before anybody asks, yes, the receptionist WAS blonde!...Sorry Blondes!.... ;D
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Today was a good one! I got a phone call from one of my co-workers asking if I could fill in for them today. I tell him ''no I have dialysis today at 3. His reply was this-- ''yeah, im sure ya do.'' He doesnt know about my dialysis yet but i mean why would someone make up an excuse like that to get out of work????
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Wednesday night I went to a ministry meeting at church. As I was walking in I met up with another church member. She turned to me and said that she did not expect me to be at the meeting as she thought I would be getting a new kidney by now. I told her that the my transplant center said the average wait for O neg was 7 years. (besides the fact that I am not even on the list yet)
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Wednesday night I went to a ministry meeting at church. As I was walking in I met up with another church member. She turned to me and said that she did not expect me to be at the meeting as she thought I would be getting a new kidney by now. I told her that the my transplant center said the average wait for O neg was 7 years. (besides the fact that I am not even on the list yet)
Yeah some people think you'll just get a transplant overnight. :Kit n Stik;
My kidneys packed in Nov '08. That NYE 7 weeks later a mate i hadn't seen in a while asked me how many transplants i'd had already?
Like you i wasn't even on the waiting list yet.
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a tech at dialysis asked me what is the difference between increase and decrease-- she said she always gets that mixed up ---
:o
what the heck --- she has been a tech for at least 8 years and I have known her for 6 years :waiting;
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Twirl, be sure to explain up and down and right and left to her....
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Friend from the UK emailed yesterday and wanted to know how long I'd have to be on dialysis. He isn't ignorant but unformed (or at least he was until I wrote back last night and explained)... Then he wrote back about the tranplant issue... I think I'll have it tatooed on my butt and start mooning people who ask that.
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Here ya go -:
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I am going to steal that picture!
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Here ya go -:
Haha!
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I am going to steal that picture!
KitKatz....go right ahead....but your not having it tattooed anywhere are you ? :shy;
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I mentioned that Jenna was in kidney rejection and a friend said "The new one?" :laugh:
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ugh. Would think as many people ask us we would be getting the word out. Ugh ugh ugh
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24 been on dialysis since 2008
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24 been on dialysis since 2008
Hi nycrtst85,
Please add a post to the "Introduce Yourself" section:
http://ihatedialysis.com/forum/index.php?board=14.0
:thx;
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I mentioned that Jenna was in kidney rejection and a friend said "The new one?" :laugh:
:rofl;
My body didn't reject my old kidneys - it just beat the crap out of them!
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"You'll get used to it."
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Had a friend ??? ask, "What have you got to be depressed about?" I should have answered, "Got a week, we'll hit the highlites" Instead I just said "A lot, but but lets not talk about me. We're talking about you."
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Ok I know this should not bug me, but is does I work in a nursing home around all these nurses today a nurse comes to me and says so are you still having to do dialysis or are you cured now
Hmm scares me that a nurse made that statement and she is taking care of our pt here OH god help them!!!
Edited: Merged with thread "Ignorant things people have said to you" - okarol/admin
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Wow.
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Just makes you want to ask if she slept through all the continuing education courses...or maybe even all of the training to begin with.
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Hello even when I'm in the hospital, I always check and ask what they
are doing and why are they doining it, I ve caught quite a few mistakes being done....
I'm with you girl...Wolfken
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was this an actual RN..or one of the helpers? An actual nurse should know this isnt temporary. Unfortunately there are many, many stupid people who ask the most ridiculous questions..or just stare at you. I hope you can find a way to let the remark bounce off of you but I would be sure not to let her work on me too often unless she knows what shes doing! God bless!
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:bump;
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Some people say the most stupid, and offensive things..... I got the following comment......
I'm a wheelchair user, and was on the tram one day, chatting with and having a laugh with another passenger.....
A guy I'd never seen in my life came up to me and said "Well Love... It's great to see you people happy... If I ended up as a cripple, I'd lock myself away from normal people".....
I couldn't resist smiling my sweetest smile and saying "Why wait???"...
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Wow, sucks to be him! :banghead;
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Good comeback! Another good come back is "I hope you have a better day"....
:rofl;
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My favourite comeback is at the top of my voice saying "And a VERY good morning/afternoon/evening to you too!"....
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I will never forget this One. My Husband, has always, been a Thin Man. Top Weight, maybe, 138. He became Sick, very Suddenly and Stopped Eating. When He was Rushed, to a Large University Hospital, Two Weeks, later, in complete, Kidney Failure, I was Met outside the ICU, Room, by Two very Prominent, Neph Drs.
The first thing, they said, to Me was, " Your Husband, is so Thin, Do You ever Cook for Him?" --------- What? No, Doctor, in Forty Years of Marriage, it never Occured, to Me, to make Him a Meal.
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Not quite said to me but,
I'm sitting down with my walking stick looking a bit puffed out. My wife, who is standing beside me is asked 'does he take sugar in his tea?' :banghead;
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So today I was assisting in a warehouse stocktake at my work. I had to leave at 4pm to go to D.... so I overheard one of the other ladies say.... " she will use any excuse not to work late like the rest of us."
I just left. She can do my D session and I will work late. :rofl;
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Said to me the other day by the transplant co-ordinator ..with a bp like that we wouldnt touch you with a barge pole ..it may be true but i sometimes wonder if they are tripping and just see a BIG number stood in front of them :rofl; because they sure dont see a person !
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A couple weeks ago my husband and I were talking to his neph about his 'emergency kit' - it has one dose of fortaz and one dose of vanco in it. The last time we left town he had gotten peritonitis, and we had a total nightmare getting health care (really long story - the bug was identified within 24 hours, but it literally took 6 days to get the additional antibiotics he needed - got it just in the nick of time), so we were asking about getting a couple of extra doses so that if that ever happened again it wouldn't be such a disaster. He said no. We said - what are we supposed to do if he gets sick? He said "Don't get sick". Uh huh. So when he got peritontis it was because our trip was so boring he thought, hmm... let's make this more exciting! How about something fun, like peritonitis?
Well, that was how silly we thought that response was then. And then we recently found out the peritonitis he had gotten on our trip never went away, so when we were standing in front of him and he said "Don't get sick", he was actually telling that to someone that currently had peritonits no one knew about. Because no one ever checked to be sure it was gone the first time. ???
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Somebody said what did you do to your arm and I told them, " I was getting crazy with
the needle trying to fix." Now they think I'm a junkie. ( Actually I've always been more than
a terrified with needles and could never inject myself ) But that's one way to get Street Cred with the low lifes.....
When a co-worker saw the scars on my arm from the graft and then the fistula one day she asked me if I had tried to kill myself. I wanted to just say yes!
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I'm a high school teacher in the suburbs of Boston (let's not go there as far as why I struggle trying to teach kids who have zero interest in learning).
I struggle with PD and AVN, hobbling around as best I can, but I have a better attendance record than most of the twenty-somethings I work with. Our 26-year old lead teacher just took medical leave for the rest of the year for no known reason. People surmise she's had a breakdown.
We just finished parent conferences. One parent started grilling me about my teaching methods and she asked whether I fall asleep in class (No way! What does she think, the kids come in, I shut the lights off and snooze?) Some kids have obviously been making things up.
So, at the end of the conference she said she was sorry about my health, but the parents wanted healthy teachers!!!
Oh, and at the very moment she said that, my wife was seeing an oncologist about her recently diagnosed lymphoma. I wanted to smack that parent across the face.
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Some people say the most stupid, and offensive things..... I got the following comment......
I'm a wheelchair user, and was on the tram one day, chatting with and having a laugh with another passenger.....
A guy I'd never seen in my life came up to me and said "Well Love... It's great to see you people happy... If I ended up as a cripple, I'd lock myself away from normal people".....
I couldn't resist smiling my sweetest smile and saying "Why wait???"...
Oh, man, I hope karma bites that one in the butt very, very soon! He reminds of the idiot I knew in college who told me I shouldn't be allowed to have kids because I had a genetic disorder that could be passed along. (I'm a juvenile diabetic.) I asked him if he intended to have a complete genetic scan before he had kids, and he said he didn't need to because he was healthy. Duh! Doesn't mean your genes are - he was a chem major, but apparently the lecture on recessive DNA didn't take.
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One of the techs told mom"It hurts me just as much as it hurts you."Mom replied," Bullsh*t, why don't you sit in this chair and let me stick you!"
My experience was this:I had to take mom to a different clinic because her's had water problems.I dropped her off and sat in the lobby. ( I wasn't familiar with the town to drive around in.) As I'm sitting there two women walk in and proceed to talk about me as if I can't hear them.The one finally asked" Did you bring someone here for dialysis?" I politely replied that I had,but thought to myself " Gee,no, I just came in here to sit on a hard chair for 4 hours and look at these 5 year old magazines".DUH!
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I just thought of a comeback to the idiots that think you just can get a kidney transplant overnight:
"Well I went to Best Buy but they were out of stock. Said they might have some in in 4-5 years..."
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:bump;
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.
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I'd have paid money to watch that show, Henry! I hate when people use the excuse that they are too smart to be polite. Anyone that "brilliant" should be smart enough to know better!
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I've got the winner, unless someone else already was told this:
"God is punishing you for being a sinner."
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.
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yall are just HOOTS!!! i am laughing myself silly..
when DH was in hospital first time, on various drugs, pain, blood TX's, etc, a few of his co workers did come in to see him, with the question: when ya coming back to work?
(paramedic 24 hr shifts).
my mom a nurse says its because he smokes half a pak of cigs a day.
his parents came the first go-round, sat for hours detailing all thiers and others horror stories of surgies, etc, the day before he had surgery. and he had a rough time of it.
when i said no visitors for 2 days post op, they called every 3 mins and had family sneak in room when i wasn't there, lay on the guilt about no visitors, upset him enough so he was crying/coughing and had to be drained and cleaned with blood everywhere.
to top this off, his mother faked a heart attack. we didn't know. i'm bringing him back in wheelchair at 2 am from a smoke. they see us coming in, they are leaving ER, come up and attack us with the loud whine "SHE COULD HAVE DIED"..
(histrionic mother)
i get so sick of the "your all better now and going back to work?"
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The worst thing, that I get now is that people tend to judge me, when they see my fistula scars, they look at me like i'm a crackhead and treat me funny. What makes it so bad that it happens on a daily basis
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One day at a time.
You look great.
We are praying for you.
My _______ (fill in the blank) was on dialysis and died a 6 months later.
Does that mean your shit will drain into a bag?
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LOL you all hoots!
:Kit n Stik; :banghead; :bandance;
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This isn't that big of a deal, and I'm sure people say this stuff to be encouraging, but it still really gets up my nose. As y'all know, I'm getting all of my transplant evaluation testing done, so that means I am coming into contact with a lot of medical types, mostly techs at this point. Before each test, I explain why I am having this procedure done...that my kidneys are failing and that I am trying to get on the transplant list (I don't offer this information; they ask me if I've had this or that symptom, and I reply, "No, I'm just trying to get on the transplant list, blah de blah." It has been a hard time for me, and having to get the tests done and also having to even talk about it doesn't make me jump for joy, so I imagine I sound anxious and upset as I explain for the umpteenth time that I'm hoping to get on the list. Most people start asking questions, mostly about whether or not I have a donor (no, I don't), and inevitably they'll proclaim, "You'll get a kidney really soon." Like they know something I don't. Like that makes me feel really confident. Like if they say it, it must be true. Like I'm gonna believe them... Why do people say that? I would NEVER say to someone who has, say, cancer, "Oh, you'll be fine!" unless I had real evidence that that would be true.
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HENRY P SNICKLESNORTER or Snorts for short ..you are my kind of guy :clap;
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I had the craziest conversation yesterday. she says: If you dont have any kidneys you would be dead. I respond: I am on dialysis, she says: what's dialysis?, I respond: dont you work in a hospital? she says: yes I do, I respond: SMH you do and explain what dialysis is, the look on her face was priceless!! what an idiot!!
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I had the craziest conversation yesterday. she says: If you dont have any kidneys you would be dead. I respond: I am on dialysis, she says: what's dialysis?, I respond: dont you work in a hospital? she says: yes I do, I respond: SMH you do and explain what dialysis is, the look on her face was priceless!! what an idiot!!
OMG, that's so bizarre! I'm sorry, but this just made me laugh. :rofl;
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What is SMH? ???
I hate all these acronyms! :stressed;
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I get, more often than you would think,: Your kidneys, really? From drinking too much alcohol huh. Nope, sorry. That would be your liver. My liver is fine ty.
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What is SMH? ???
I hate all these acronyms! :stressed;
me too, probably just showing our age...lol <---- irony...
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Urban Dictionary: smh
Acronym for 'shake my head' or 'shaking my head.' Usually used when someone finds something so stupid, no words can do it justice
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i got into another stupid conversation. I was telling this guy that I go to dialysis for treatment and he was like "wow sad to here that" a minute later he offered me a beer. I was like no thank you......didn't I just mention I'm on dialysis.....not as bad as the nurse conversation from the other day!! LOL
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LOL..you could have taken the beer and offered it to your caregiver..hahahha
no seriously..there are support/education groups up the yazoo for everything but dialysis..??
:banghead;
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IHD is the BEST support group!! :flower;
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IHD is the BEST support group!! :flower;
AMEN!
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Ok….this was kind of awkward. Just a few minutes ago a co-worker stopped me in the hall. She asked how you feeling and I said not good….my BP is all over the place and I am not sleeping.
Keep in mind I have Rosacea. She looks at me and said Well….I was gonna say you looked good, your cheeks are nice and rosy. Sometimes you do have that yellow jaundice look about you….I am sure you’ve noticed it. Ummmm No.
Granted…I know she didn’t mean any harm. I think she was just really trying to make conversation.
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I hate it when people tell me I look really good or they are glad to see me feeling better. The first thought that always comes to my mind is, "really? I sure don't feel like it." I can't tell if they are trying to be nice or if they really can't tell that I feel worse than usually. I love it when they tell me I look better 15 minuets after I get done vomiting. One night at work I vomited in 3 different places and at the end of the night I was told my skin was getting its color back.
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Of course you were getting your colour back...who wouldn't with their head in the downward dog all evening???? I really think people don't know what the heck to say so words come out and sometimes those words don't somehow apply to the situation but I do think that most people really mean well even though good intentions alone can be fairly irritating at times.
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Kind of like the amazing number of people at funerals who have commented, "She looks so nice." No, she looks dead, with lipstick on. :urcrazy;
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When people who know me tell me I look so good I must be doing better I tell them,"Looks can be deceiving."
A little hair dye, a little make-up,nice clothes,it's all a show. They should see me before I've worked so hard to deceive them.
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When people who know me tell me I look so good I must be doing better I tell them,"Looks can be deceiving."
A little hair dye, a little make-up,nice clothes,it's all a show. They should see me before I've worked so hard to deceive them.
I agree Sunny. Thank goodness for blush and hair dye! I guess people have no clue what to say. I would rather they say nothing. Someone say me a couple of weeks ago for the first time in 2 years and they said "how are you feeling? You are looking really good". I know I have aged 5 years since they saw me last. I just said "I'm fine". That is all they really want to hear.
Thank goodness I can come here and don't have to look good or pretend to feel good. :cuddle;
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same thing happened to me yesterday. Friend found me in the mall sitting on a bench (the halfway mark) and said: wow you look fantastic.... I thought you would actually look ill" So I said:" well , the disease is on the inside"(smile).......
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Good response, Des!
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This was just really odd, more about what WASN'T said to me... My DH has a very complicated relationship with his parents that goes back many years. Simply put, his mother is unbalanced and his father just tries to placate her. Growing up, my DH was virtually ignored; his younger brother had a serious illness that damaged his brain for life, and this is a terrible thing for any parent to go through. Anyway, to this day, DH is virtually estranged from his mother and sees his dad infrequently. They live nearby. I took DH, his son and his dad out for breakfast this AM for Father's Day, and then we went to the zoo. We had a pleasant day. DH's dad is like many older men in that he will talk all day about his heart condition and his meds and how he can't tolerate statins. My own father was this way, and seeing that I have a lot of medical knowledge because of CKD, I can ask informed questions and look really really interested. I stay out of this complicated family dynamic, so I haven't seen DH's parents in some years. DH's mom was not with us, so I had only DH's dad to deal with. We had pleasant and interesting conversations about his health and the oil spill and a few other things. Anyway, not a single time did he ask me how I was doing despite knowing full well that I am this close to D and am trying for a transplant. I don't really feel a great need to pontificate about my renal woes, but it would have been nice for him to at least ask how I was doing, especially since we spent all day talking about how HE was doing, mainly because I know he likes talking about it. It just made me feel odd. He seemed so utterly clueless, and he's not a stupid person. My husband is at an utter loss to explain this and also feels it is very odd; plus, he's a little embarrassed. Just goes to show that people are truly odd, and sometimes you just don't know what they could possibly be thinking...or NOT thinking. No biggie, but just weird.
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MM probably a case of him being more self centered focusing on HIS medical issues and where he is at rather than worrying about anyone else's. It also seems that kidney disease really is that "out of sight, out of mind" type disease (specially with dialysis to prop us up) - it's not like we go around with shaved heads/bandanas to remind everyone that we're on chemo or something. To all intents and purposes we look "normal" - which is the whole point of dialysis (or for those that are pre-D, the maintenance meds/treatments) - however it can be frustrating at the same time. I often get the "you look great" thing - and that's from my father who knows what the deal is. I know he means well so there's no point in getting all annoyed about it. Just accept it, focus on the thought behind it, and move on.
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Moosemom, like I said.... we look fine..... so they don't bother to ask.
and well .... I just got tired telling people. I just say "fine thank you" unless it is a possible donar.
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Well, the man didn't even say, "You look fabulous!" or anything approaching that. I don't expect everyone to know the first thing about CKD or dialysis, but c'mon...kidney transplantation is pretty dramatic stuff, and he knows I'm trying to get on the list, so he could have at least asked about THAT. You don't have to know your potassium from your phosphorus to understand what a big deal it is.
I don't want anyone to think I am really sulking about this because it truly is not that important to me. I am curious, though, as to why he never mentioned it. I could understand it if there was this unstated mutual agreement not to talk about anything medical, but he was very keen on talking about HIS stuff. He subscribes to a health newsletter, and occasionally he will send them to me when he is finished with them. Very occasionally, he will call me and proceed to tell me about his latest medical news (I'm probably the only one who will listen), so it's not like it is a taboo subject. But not one single time today did he say a single thing to me, despite knowing about my condition.
I think what bothers me is that this is indicative of how little support my DH gets from his dad. I know this is hard on my husband, and it would be nice if his dad would ask him occasionally how things are going and if he needs anything. I have my DH, IHD and a whole team of docs on my side, but DH has no one, not even his own family, which became painfully evident today. I feel bad for my DH; I don't feel bad for me.
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well apart from the obvious thought that he's a selfish boob, but that seems to not fit given him passing on medical newsletters to you, but maybe he was waiting for YOU to bring it up feeling it might be inappropriate somehow? Sort of along the lines of your unsaid agreement sort of thing. I don't know. You'd think he'd ask absolutely. Who can tell with people sometimes... I'm just sorry you feel there's a lack of support for you and hubby from him, but it sounds like from the potted history you posted that there probably never really would be much support from that area.
It's like my family a little bit. My uncle is head urologist of the local hospital, and it is ironic that he is involved in live donations in terms of removing the donated kidney. So he knows all about this area. He has 3 sons (my cousins) - 2 of which are in medicine, and the other who is a lawyer. This man's office is 4 floors above where I do dialysis. I have been on dialysis for almost 4 years. Number of times this man has come to visit me or eqnire about how I am doing? ZERO. Number of times he or my cousins have enquired about donating or offered: ZERO. Hell my sister and I met by chance one of the cousins in the hospital when we were on our way to do the psych test (this was 3 or so years ago) and he was absolutely clueless as to why we were there.....
And well that side of our family has always been remote(for various reasons) and well I've given up worrying about or expecting anything from them. Oh yeah my neph updates my uncle (as they are colleagues) on a regular basis, but I still haven't actually ever had any contact from him. I wonder if I actually ever get a transplant if they'd even bother to send a card or something.
Anyway my point is when you have such strained relationships in a family perhaps it's best to just not expect anything.. that way when or if something does come from there it's an unexpected bonus....
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Naw, I didn't expect anything, but I am always rather interested in not what only people do (or don't do), but why. So I'd be interested in his thought process. It's possible that he might have felt uncomfortable asking me about it, especially since he is fundamentally a coward. He is certainly not evil, and he called tonight to thank us for a nice day, and I think he was very grateful and gracious; we didn't have to ask him to come along. He is a nice enough man, but he IS cowardly.
Richard, what you describe is FAR more unforgivable. I mean, your family members have more than a passing interest in medicine; they are IN the field, so for them to treat you with such disregard is appalling. I can understand you just not expecting anything from any of them, and quite right, too, but isn't it sad to NOT be able to expect any regard from someone? I mean, if someone in my family thought that they couldn't expect a bit of grace and care from me, well, what does that say about ME? If you can't expect simply human warmth from someone, then it's just tragic.
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Richard, what you describe is FAR more unforgivable. I mean, your family members have more than a passing interest in medicine; they are IN the field, so for them to treat you with such disregard is appalling. I can understand you just not expecting anything from any of them, and quite right, too, but isn't it sad to NOT be able to expect any regard from someone? I mean, if someone in my family thought that they couldn't expect a bit of grace and care from me, well, what does that say about ME? If you can't expect simply human warmth from someone, then it's just tragic.
MM : I have a family member also in the medical field ..who not only never asks how i am , but thinks its alright to skip dialysis to take another member of the family (not their fault) to the doctors !!! While she sits at home with the car on the driveway !
Im afraid everyones the same ..well 99.9%, if its not happening to them , they are not interested !! My best friend got thrown from her horse a while ago and broke her arm, oh my word ..the fuss! Yet i txt her every few days , made sure she was ok etc. Now her arms fine and have i heard from her ? what do you think ?
EDITED: Fixed Quote Error - Bajanne, Moderator
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I was wearing a short-sleeved shirt, so my scar from fistula surgery was visible (although if you are old and your eyesight is not great, you might have missed it. It's not really that obvious if you're not looking for it). In the tropical house at the zoo, it was hot, humid and crowded, and I had to leave and sit down outside because I suddenly felt unwell. On another occasion, DH's dad was talking about forgoing a particular surgery because he didn't think he really needed it, and I said that anything to avoid unnecessary surgery is great because there are risks with anesthesia. He replied they make him nauseous, and I agreed (having just had 2 different procedures), and he remarked that my kidneys probably didn't clear it all very well. So he KNOWS/REMEMBERS that I have this kidney problem, but despite all of the above, he STILL never even lied and said, "You're looking good." You know, I think I've inadvertantly become something of a recluse because whenever I do have interactions with people, I usually find myself completely baffled. I guess I just don't get out much. I have never held a grudge, and I don't take things personally. This stuff with DH's dad I don't take personally, believe it or not. I just find it to be so odd! And when I hear stories likeKICKSTART'S, well, I'm just perplexed all over again. But to be fair, DH's parents are truly odd units, and as long as the conversation revolves around him and his medical issues (which really are not that many as his heart problems seems to have been taken care of; he's doing really well, actually), he's happy, and that's all I care about. He had a nice Father's Day (thanks to me! That's the ironic part. DH wouldn't have invited him to join us!), and that's what it's all about.
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Richard and MOM, i could have written these posts myself. lately i am so exhausted i have troubling articulating.
ok, another one for this list:
"hey can't your ex wife help?"
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"hey can't your ex wife help?"
OK, this one made me laugh! What did your DH say to this? :o
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he actually said "sure"
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My ex-girlfriend (practaically married) helps with laundry sometimes and sometimes mows my yard. Most people are surprised when I tell them.
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you are a blessed man!
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Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."
I was shocked speechless. Talk about making me even more terrified of the upcoming week.
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wow :o
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Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."
I was shocked speechless. Talk about making me even more terrified of the upcoming week.
This is exactly the reason why my reply to the how are you's are ussualy : fine thanks and you. People get tired of hearing about any sickness in general. Our whole lives are about this disease but we have to realise that theirs is NOT.
So... I fake it..big time. My dialysis unit knows me as the person who answers the how are you's with :Brilliant Thanks! I do not tell anyone about my diet restrictions but wiggle around it by doing the best with what I've got or bringing one dish that I have prepared , thus I will be eating from that one.
I will answer honestly if the ocassion needs an honest answer.
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I was shocked speechless. Talk about making me even more terrified of the upcoming week.
Off topic here: Please don't be terrified, it is hard and I still don't like it as I have only been on dialysis since April but I KNOW you will feel better and YOUR OLD SELF will return. It is all worth it. Educate yourself, read, read read anything you can get your hands on about your disease. Message me if you need to chat.
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We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around
Jeez! Argh!!! What a [string of deleted potential adjectives]. Really does show how dialysis separates the wheat from the chaff.
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sis asked me how we were holding up, i said "never frickin better!"
LOL she understood exactly.
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Right before I started dialysis a friend of mine asked why I looked so sick. I explained that I had ESRD and was starting dialysis in the upcoming week. She replied, and I quote, "I have a brother who's in dialysis. We don't invite him to family holidays anymore because his stories about dialysis and his strict diet are just too depressing to be around."
I was shocked speechless. Talk about making me even more terrified of the upcoming week.
wow :o
I second that wow.
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I third that WOW! I remember that when my brother (now passed away) was on dialysis, he was treated with love and care at our family gatherings. Everyone was always glad to see him there. I have never heard anyone with anything negative. In fact, now that I am myself on dialysis, I always wish I had heard more from him!
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I was shocked speechless. Talk about making me even more terrified of the upcoming week.
Off topic here: Please don't be terrified, it is hard and I still don't like it as I have only been on dialysis since April but I KNOW you will feel better and YOUR OLD SELF will return. It is all worth it. Educate yourself, read, read read anything you can get your hands on about your disease. Message me if you need to chat.
Thanks! I'm now on my 5th month and starting to adjust. However at the time this happened I was scared and didn't know ANYONE who knew anything about dialysis. To have this be the first story was distressing to say the least!
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WOW is right. That's horrible!
My family are very understanding (well mostly.. I still think :urcrazy; to my father who gave me a big bottle of champagne for my birthday a few years ago... wtf???) and know when they invite me for a meal that some foods are out, and I won't be able to drink much. That really helps but I try my best to organise myself in that respect and not expect others to prepare for me.. so if there's food I shouldn't have much of I don't tell them off for making the potato surprise with extra tomato and pineapple, but just pick the bits I feel comfortable having, and explain why I can't have whatever. That sort of thing hasn't really been an issue though fortunately.
Amazing that someone would be cut off like that because their needs are such a "burden" and "too depressing"
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Thank Goodness that's not my family. I can't imagine being that insensitive to a family member. My whole family went on a salt free diet with me when I first started dialysis - I was living with my parents at the time.
I've done 10 years on dialysis and It's not that bad. Your body adjusts and you start to feel better.
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Unbelievable! How horrible that they avoid him because he's too "depressing." I'd have to guess none of them have bothered to sign a donor's card.
(Long before my husband got sick, we'd both signed a donor's card, we also sat our kids down and discussed it with them and all three agreed, even before daddy was sick, that if anything ever happened to them, they'd give any part of their body that could be used to help others.)
As for family, my hubby calls MY mom to "talk to someone who really cares about me" when he has a hard time with doctors and he's already shared with me and needs another person to share to, I'm glad they have a relationship where when my mother tells him "I love you, Alan" he knows it's true.
Even as the care giver, I get the stupid questions for my husband's illness, things about "losing weight" or "must be nice to not have to work" and of course the "is he on the list?" and "how is he feeling?" How do you think he feels? He feels sick!
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WOW.That is harsh. It's odd how the people who don't want to hear about your illness are the first to call you up to moan if they have any kind of medical problem. I'm very sympathetic to my friends who call me up to complain that they're under the weather, or having some trouble with their health, as I know what it's like to feel rubbish. I don't however talk about my illness to them because I can tell they don't want to know.
xx
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My pet peeve? Friends tell me how great and how wonderful I look. Inference: it can't be "that" bad.
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I showed a picture of a chocolate cake I'd baked. Her response was:
"Since you were a bad friend and didn't come to my birthday party or send me a present, you have to make me a cake like that"
My reason for not attending her birthday party? I'd had a rugby ball sized kidney removed and was recovering from surgery.
For the record she didn't once come and see me in hospital or at home as I recovered. Now that I think of it, she didn't do anything for my birthday either :rofl;
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Wow.. I stayed up all night reading this thread. I laughed, I sympathized with some posts, and I wondered why the heck I stopped coming to this site.
I have a few to add.
About the end of July, 2008,I had my first bout ever with peritonitis. At that point, I'd been on an off dialysis for about 18 years, and was a little more than 4 years in on the stretch of dialysis I'm on now. I was treated at home with antibiotics, both orally and in the dineal. Two weeks after this, I had to go out of province for my home dialysis clinic visit. On the four hour drive there, I started feeling sick again, the pain and nausea. When I was talking with the nurse, I threw up on him. He was really good about it, but I felt bad. Anyway, the doctor that saw me that day was one who originally believed I was sabotaging kidneys and tried to keep me off the transplant list (that's another story entirely). My little brother, who is six years younger than me, had driven me to clinic that day, and he was in the room when the doctor came in to see me. She looked at me, then the chart, then said, "hmm, two instances of peritonitis in as many weeks. Suspicious, isn't it?" I knew what she was implying, and so did my brother, and he didn't know the history. I saw him clenching his fist, and I saw his eyes, which are a very pretty green, got really dark, which they do when he gets mad. I think that if the doctor had been male, my brother would have hit her.
And this one, a doozy. Because of the peritonitis, I am now on hemo. I was in the hospital for a couple of weeks, over Christmas 2008, fighting the third and final bout with it, and they transported me home by ambulance to my local hospital. We got in late, so I was just put in a room and allowed to go to bed. My GP came in to see me early the next morning. I had only been on hemo about a week at that point, and they were still trying to figure out what my dry weight was. My legs were twice the size they normally were, and I was using a walker to get around. After I explained all of this to him, with my mom sitting there (I love my mom, btw. She's my hero) he told me that if my weight was affecting my mobility, I should consider trying to lose some of it. It just shocked Mom and I so bad that I'm sure we both would have had to have our jaws picked up off the floor with a shovel. He discharged me and Mom took me to dialysis. I haven't seen him since.
sorry if that's a bit long winded
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I have a half-brother, and I guess his son is my half-nephew...??? Anyway, I don't see much of him; he is living in San Antonio and working on the paper. I saw him at my mom's funeral, and subsequently we have emailed each other a couple of times. He asked in a convuluted way what my health situation was, and I was very straightforward and explained that I'm trying to get on the transplant list, that I am not on dialysis yet but that I am headed that way, probably sooner rather than later. He wrote back and said something along the lines of how good it will be when I feel better after each WEEKLY treatment. "Weekly dialysis????????????????????????? You must be JOKING," I replied. I then went on to straighten out THAT gross misconception. I have no idea where he got the idea that you could just pop on the machine once a week and then life would be just grand. ::) The worst part is that this guy is one of the smartest people I know...
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A friend had heard about Jenna's rejection and said "She can get another kidney, right?"
I said "Yes but the wait in Los Angeles is really long."
He said "Ok, good she can get one."
(Yeah, dumbass, how about YOURS??) :rofl;
I shouldn't get annoyed. I didn't know squat about dialysis or transplants before this hit Jenna. :P
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An acquaintance (and former workmate) heard via the local grapevine I was on PD and after asking how I was doing, proceeded to tell me all about a friend of hers that had been on PD and died from an infection. Like I wasn't aware this could happen and needed reminding!
Love reading all this - some are just too sad and some are so funny
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Back in March, my husband was rushed into the hospital ER because of severe belly pain. Going back a little, he had his kidneys removed in October 2009, one was cancerous and the other was also showing signs of cancer. (Thankfully he's beat that) so while he was in the ER, they sent in these 2 young guys to try and see what was going on in his belly, in case of a bleed, etc.
While they had that little machine, running it over his belly (for the life of me I can't remember what it was called) they were very quiet and this had gone on quite a while, we hadn't thought of anything until one of them said "well, your kidneys look good" My husband jumped on that and said that's impossible, I don't have kidneys. This kicked off a discussion because the 2 young guys didn't know kidneys could be removed. We had a good laugh about it and the 2 guys ran for the hills. Never saw them again!!! :rofl;
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Hi guys, it's the 5th Birthday, so thought I would log on again, it's been a while - sorry!
Although I have had my recent kidney for 2 years now, I had my fistula removed about 18months back as the blood flow was pretty high. While I was about to have it removed the surgeon asked when I last dialysed, so, I told him it was about 6 months back, he decided it might be a good idea for me to have a quick session before he operated (just to be safe), although my blood levels all looked good (I should hope so as my new kidney had been working well), the anaesthetic might have an impact on it.
I then thought, you are going to do what, with your knife....... to me?
Who knew that these crazy dialysis quotes would continue after you stopped going on dialysis.
Cheers,
Al
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Good to have you back for the anniversary, AlasdairUK!
:beer1;
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:flower; Thanks Al, you give me the courage too keep on tiring to learn woodworking!!! I've been on the machine since 2005 1/ 1/2 years centers and 3/ 1/2 on Nexstage. Have been a the transplant list for three years. I served 30 years U.S. Navy, enjoyed most of the time. Life moves along, so I figure be postive, enjoy people and try to be a good hubbie and grandpa.... My rugrats are on their own.. :shy; Ha-Ha !! Mike
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Senior-Chief welcome to IHD. Please go introduce yourself. http://ihatedialysis.com/forum/index.php?board=14.0
OK Back on topic please. :police:
Rerun, Moderator
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Neighbor said to me "your no fun any more!!! nice guy... then he was run over by his own tractor while unloding it from a trailor, he is fine but his leg is not, i said to him your no fun anymore and walked away!!!! :yahoo; KARMA
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Neighbor said to me "your no fun any more!!! nice guy... then he was run over by his own tractor while unloding it from a trailor, he is fine but his leg is not, i said to him your no fun anymore and walked away!!!! :yahoo; KARMA
:rofl;
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"Now that you have a new kidney,do you stilll have to do dialysis?"
"Yes, and that is why I went through all that! I just wanted more surgery, medications and bloodwork. That, and I liked the attention. Oh yeah, and the wonderful hospital food :puke; :sarcasm;
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Neighbor said to me "your no fun any more!!! nice guy... then he was run over by his own tractor while unloding it from a trailor, he is fine but his leg is not, i said to him your no fun anymore and walked away!!!! :yahoo; KARMA
My pet peeve? Friends tell me how great and how wonderful I look. Inference: it can't be "that" bad.
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I had to arrange an alternative transport to D on Wednesday. An old guy from church picked me up and he was very annoyed that I choze to go to the hospital for dialysis. His friend's brother does it at home and he has no problems whatsoever.
Very patiently I told him that his friends brother is on PD and I am on HD and that I didn't CHOOSE to do anything but are very reluctantly forced to do so, to stay alive.
Why don't they just ask.. but they love to make assumptions on a tit-bit of information they heard somewhere from someone.
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OK, OK, OK...so I am not the posterlady for "Suffering with Grace" and "CKD Makes Me Happy and Teaches Me How to be a Better Person." I accept that. But get this...yesterday I had to go to the bank because I had a CD that had matured, and I wanted to take out a lump sum and put the rest in a new CD. It so happens that I am getting my basement laundry room refinished because that's where I am going to be setting up the waterworks for NxStage and where I will be storing my supplies, and I don't want it to be the Black Hole that it is now. So I sit down with the nice bank lady and tell her what I want to do. She has the audacity to obliquely ask me what I am planning on doing with the lump sum I am taking out (no doubt hoping that I am planning to reinvest it in her bank). As my next stop was to my neph appt (which, as you know, always makes me go nuts), I was not in the gentlest of moods, so since she asked, I told her. She looked quite pitiful and gobsmacked, and then do you know what she said???? She said, "Well, you seem like you've accepted what's happened; you sound so happy." :rofl; :rofl; ME! MOOSEMOM! Sounding "happy"!?? And then you know what she said?????? SHE SAID THE ONE THING THAT IS GUARANTEED TO MAKE ME GO BALLISTIC!! She told me that God doesn't give us more that what we can cope with. Like God Himself told her that. I just looked at her and told her that I had seen people crumple under the pressure of all sorts of tragedy (I used to be a volunteer counsellor to parents of autistic/special needs kids, so I know what I'm talking about). Anyway, I just had to laugh (after I got out of there)...that someone told me that I seem "happy" and "accepting". She obviously hasn't read my IHD posts. I thought you all might get a giggle out of this. And I hope y'all will be proud of my acting skills. "And the Academy Award goes to...."
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Oooooh, I hate that "God doesn't give us more than we can handle" BS! How about the number of people who can't handle their lives and commit suicide? How about what he's given to abused kids? Shall I ask my friends' 4 adopted children, all siblings from the same mother, all under the age of 8, how they managed to handle what God gave them? Or maybe all the belt scars on their little backs are answer enough for that!
Okay, off soap box here - but that one makes my teeth grind. :rant;
Oh, and it's 5 kids now - they just adopted the mom's latest newborn, too - but at least "mom" didn't have a chance to hurt or half-starve that one.
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Oooooh, I hate that "God doesn't give us more than we can handle" BS!
It's a dumb saying. Look at the people killed in the holocaust. I'd say they got more than they could handle.
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I would have been ballistic!! And then smacked her to where the sun don't shine :Kit n Stik;
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I have a series of ten buttonholes along the length of my fistula. Because I've been dialysing for years they are slightly dimpled.
I was buying groceries and the cashier noticed the holes in my arm. She was well tattooed and had several piercings. She asked me about my buttonholes. It seemed to me that she was interested in them as another form of body modification. After I explained their purpose she looked a bit disappointed that they weren't ornamental.
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Okay, that's just funny, mogee! Just think, if you dress punk, no one would notice the fistula anymore!
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Mogee, that's a really funny story. I bet that's not the answer she expected!
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The all time stupid question Say you had surgery or broke a arm or leg ect ect somebody has to ask DID IT HURT?
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I have a series of ten buttonholes along the length of my fistula. Because I've been dialysing for years they are slightly dimpled.
I was buying groceries and the cashier noticed the holes in my arm. She was well tattooed and had several piercings. She asked me about my buttonholes. It seemed to me that she was interested in them as another form of body modification. After I explained their purpose she looked a bit disappointed that they weren't ornamental.
:rofl; :rofl; :rofl; :rofl;
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I have a series of ten buttonholes along the length of my fistula. Because I've been dialysing for years they are slightly dimpled.
I was buying groceries and the cashier noticed the holes in my arm. She was well tattooed and had several piercings. She asked me about my buttonholes. It seemed to me that she was interested in them as another form of body modification. After I explained their purpose she looked a bit disappointed that they weren't ornamental.
I love that....
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we had a visiting nurse for awhile. He actually said " i'm sure you'd be a very nice person if you weren't so uremic" I feel sorry for whichever fresinious clinic he went to next.
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we had a visiting nurse for awhile. He actually said " i'm sure you'd be a very nice person if you weren't so uremic" I feel sorry for whichever fresinious clinic he went to next.
What you should have said in response: "I'm sure you'd be a very nice person if you weren't so much of an asshole." :Kit n Stik; :rofl;
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we had a visiting nurse for awhile. He actually said " i'm sure you'd be a very nice person if you weren't so uremic" I feel sorry for whichever fresinious clinic he went to next.
This just doesn't even make any sense. ::)
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uThe worst thing anyone told me was a family member telling me tat I should go into a nursing home. This was when I fist started going to D and having al lot of medical issues. :stressed;
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I had my best friends boyfriend say I look like a heroin addict , yea needless to say I don't hang around him much anymore for fear that i'll deck him, Or that my boyfriend will deck him :Kit n Stik;
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I was 26 when I started D and was teaching French at a university in Nova Scotia, Canada. A student approached me one day and told me that some students had noticed the "track" marks on my arm and were wondering if I was an addict. I was actually grateful for this person's honesty and it gave me a chance to talk to my class about dialysis and organ donation. A few students opted to check me out at home hooked up to the machine ( I ended up tutoring one of them during my first hour on) and quite a few wanted to know how to sign up to become organ donors.
People often say rubbish because they're horribly uncomfortable...if you were a heroin addict you could go to detox and get off the heroin...getting off D is tricky too...maybe he'd like to donate a kidney so you wouldn't have to needle yourself any more (fat chance right?).
Then of course you could make him feel really bad by telling him about how damned hard it is to be so young (never easy mind you, no matter our age) and have to go through all you do. :cuddle; :cuddle;
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thank you honey, and that selfish prick would never donate a kidney , I really have a strong dislike for him
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thank you honey, and that selfish prick would never donate a kidney , I really have a strong dislike for him
I'm not surprised you dislike him. What a moron. Really...how can a person be so obviously obnoxious?
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When talking to someone about dialysis, and they say something stupid like, "you're too young to have to go through something like that" I smile very sweetly and say, "I was 12 when I started." Usually shuts them up. It's the people who don't believe you could be on dialysis, cuz "that only happens to old people." It's a problem that I have with a lot of information about coping with kidney disease, it's usually focusing on people 50+. I'm 32 years old and I've been living with kidney disease for 20 years.
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My 'best friend' of 30 years decided to txt me today (after a long break) and said 'how ya doin?' I replied, not so bad but im on morphine now and waiting for those dreaded ct scan results , to see what they found. Her reply ..'ok let me know how you get on'. (she only lives 15 mins drive from me as well!) :beer1; Mate !
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A (male) friend of mine went to our family get together last night at a buffet. He was sitting next to my brother's girl friend and my friend told me later they were picking out people and trying to guess what they were talking about. I then asked what they said about me. "Oh, you were talking about death and dying." :(
Really? ???
He got to go home, take a pee, and sleep in his own bed. I got to go to the center, get 2 needles jammed in my arm and try and sleep in a plastic recliner and then have to pack up all my stuff at 3:30 in the morning and go home. People have no idea how close to death we are everyday. I may get hit by a bus or I may not. I WILL get 2 needles jammed in my arm 3 times a week for the rest of my life. :(
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Rerun, it's just all so unfair. :cuddle;
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Rerun , People will never get it!
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Not sure which is worse, them saying it or your "friend" repeating it. :Kit n Stik;
:cuddle;
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Rerun, that sounds horrible :(
I'm just posting to agree with Riki. I get that ALL the time and I hate it when people say "oh you're too young to be here" when I get to the centre. It's usually the hospital drivers picking up the other patients so I know they don't "get" it. I also know they mean well when they say it but in fact it just reinforces how tragic the situation is.
I've only been on dialysis for a few months so I have no idea how you cope with statements like that Riki!
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Rerun, that sounds horrible :(
I'm just posting to agree with Riki. I get that ALL the time and I hate it when people say "oh you're too young to be here" when I get to the centre. It's usually the hospital drivers picking up the other patients so I know they don't "get" it. I also know they mean well when they say it but in fact it just reinforces how tragic the situation is.
I've only been on dialysis for a few months so I have no idea how you cope with statements like that Riki!
you get used to it over time. When I was about 15, a year or so after my first transplant, a lady from the kidney foundation asked me how I liked being home schooled. I just kind of looked at her, cuz I've never been home schooled. She told me that I had to be home schooled because there was no way I could do dialysis and go to school and keep up like I did. I remember asking her why. I had been on PD, and was actually the first child on home dialysis in my province, so I kind of understand her reasoning, but I was a little offended, because the reason I kept up was that I worked my ass off, and had help from child life specialists when I was in hospital to keep up, and she didn't seem to get that.
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I was 26 when I started D and was teaching French at a university in Nova Scotia, Canada. A student approached me one day and told me that some students had noticed the "track" marks on my arm and were wondering if I was an addict. I was actually grateful for this person's honesty and it gave me a chance to talk to my class about dialysis and organ donation. A few students opted to check me out at home hooked up to the machine ( I ended up tutoring one of them during my first hour on) and quite a few wanted to know how to sign up to become organ donors.
People often say rubbish because they're horribly uncomfortable...if you were a heroin addict you could go to detox and get off the heroin...getting off D is tricky too...maybe he'd like to donate a kidney so you wouldn't have to needle yourself any more (fat chance right?).
Then of course you could make him feel really bad by telling him about how damned hard it is to be so young (never easy mind you, no matter our age) and have to go through all you do. :cuddle; :cuddle;
I have a story similar to this. When I first got sick, I was getting blood transfusions about once every six weeks. The hospital had a really hard time getting the IVs started, so every time my entire arm would be covered in bruises, usually on both arms. I taught in a school with some pretty rough characters. One day after class, a boy who was known to be the enforcer in the local gang stayed after class. He waited for every one to leave and said, "Hey Miss, I've noticed your arms the past couple of months. If there's a guy, I need to take care of..you just tell me where he is and he won't hurt you no more." I was speechless for a minute and then explained I wasn't being beaten at home. I was both appalled and flattered. :P
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Pretty much get the same as everyone else...
I can handle the people asking me dumb questions. my brother is always telling me he wishes he could switch places with me. it annoys the hell out of me.
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I haven't really had anyone say anything like what you've all experienced but I must say that I am tired of being treated like a four year old. I understand that my family is worried about me and wants to know how I'm doing but I am tired of playing 20 questions every day and its literally every day. I'm grateful to have such a caring and involved family, I really am but enough is enough, I just don't have the heart to say anything because I don't want to hurt their feelings or seem ungrateful.
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Jami, you remind me of Jenna. I am sure she feels like we are always focusing on her health. It's hard to break the habit because we caregivers care so much and worry too, and that's been the pattern for a long time. I am trying though, to let her figure stuff out on her own, and she seems to be taking more responsibility, so I think it's working.
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Last night at D, I over heard the head nurse telling a patient that dialysis wasn't "that big of a deal" and that Cujo form Entertainment Tonight was portraying dialysis as such a grueling experience..... and it's not. ???
Really? She sees us during treatment but she does not see us at home. She does not know how hard it is when we are not actually at treatment. Does she think we enjoy cramping, nausea, and vomiting? Having 2 giant needles jammed into our arms 3x a week?
I lit into her! I can say chemo is no big deal.... only because I've never been through it. But I still have some sense of reality that it is a huge deal! >:(
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I haven't really had anyone say anything like what you've all experienced but I must say that I am tired of being treated like a four year old. I understand that my family is worried about me and wants to know how I'm doing but I am tired of playing 20 questions every day and its literally every day. I'm grateful to have such a caring and involved family, I really am but enough is enough, I just don't have the heart to say anything because I don't want to hurt their feelings or seem ungrateful.
I remember how frustrated I would get as a teenager when family and friends got together. All the other kids got asked about their college plans, school, their sports teams, their part time jobs, even their new driver's permits. All they ever asked me was about my diabetes. As if that was the only thing that mattered, and the only thing that defined me.
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This might be a bit ungracious...well, it IS ungracious, but it just rubbed me the wrong way. I got an email from a cousin the other day asking about my plans for T-giving (we're planning a family reunion down south), and she said that she was praying for my health. She and her family are all church going people, and I respect that, and I am grateful for any and all prayers, but her mother was on dialysis for many years until she died, and this cousin has a bunch of brothers and sisters and sons and daughters and nieces and nephews, and I just thought that while telling me she was praying for me might make HER feel good, what would REALLY be nice would be for someone to volunteer to at least be tested or at least give a moment's thought to being a donor. I know that is selfish and ungracious, but how is it that people who talk so much about going to church (one cousin's husband is actually training to be a preacher!) just ignore the fact that a family member is ill and needs a kidney? Do they really think that praying for me is somehow going to make a kidney magically appear? If you don't want to donate or even be tested, that is certainly fair enough, but don't be thinkiing that God is going to take care of it. Maybe he's looking to YOU to take care of it.
Not very nice of me, I know. I have another cousin who needed a new kidney, and no one in the family stepped up for him, either. His donor was the husband of a childhood friend, and he had never even met my cousin. My family should be ashamed for ignoring him, too.
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I remember how frustrated I would get as a teenager when family and friends got together. All the other kids got asked about their college plans, school, their sports teams, their part time jobs, even their new driver's permits. All they ever asked me was about my diabetes. As if that was the only thing that mattered, and the only thing that defined me.
Exactly, and like I said I really do appreciate their concern. But its like, I'm trying to open a store on etsy.com to sell these cases that I make (http://i55.tinypic.com/24wepdx.jpg), it would be nice if they showed some interest in it.
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Oh, MooseMom.. I know EXACTLY what you mean. My mom has 4 siblings, and my dad has 6, so there's a gaggle of cousins on both sides of the family. They all know that I'm on dialysis, and they all know how hard I've been taking it.
It was about this time last year, after having a chat with my mom about it, I wrote a letter to my cousins and sent it out on facebook. Now, I know some people would think facebook is a crude way of doing it, but that's just how my family communicates. I got one reply back, from one cousin. She asked how they test, cuz that's all I asked, for them to be tested. I told her it was just a blood test. That was the last I heard from any of them. It just burns me, because if anything happens with any of them, I'm expected to help, but none of them will step up to help me.
My little brother has never been tested, though I would like him to be. My fear with him is that, if he was a match, he would go through with all the other assessments, but I know he's afraid oft he surgery, and I"m afraid they may pick up on that and think he's being coerced.
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Well this is why, riki, that I'll just take my chances with a cadaveric kidney. This way I'll know that someone gave me a kidney out of true compassion and generosity of spirit.
I know that people may be afraid, but you know what? I'm afraid, too. I'm supposed to have Thanksgiving with these people, and I honestly don't know if I can go through with it.
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I've had 2 cadaveric kidneys, and neither lasted me very long. I've been told, and I've seen it first hand, that a living donor kidney will last longer. Albert Einstein said that insanity is doing the same thing over and over again and expecting different results, and that's what I've been doing. It's time to try something else. I've been waiting almost 6 and a half years now and, especially in the last 2 or 3 years, I've been watching my mental health slide, and it's scaring the hell out of me. I can't talk to my nephrologist about it because he doesn't do clinic visits with the HD patients anymore, and I'm certainly not going to ask him about it in the unit, when there's 4 nurses, 2 support staff, and at least 5 other patients in earshot. I don't want to go to my GP, because he's a complete asshole. I went to him before with questions when I started noticing things. It got me worried because I knew there was a history of mental illness in my family, but he brushed it off and said there was nothing wrong with me. I've been suicidal before, and I don't want to go down that road again. I just want to get one thing under control so I can focus on the other.
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Riki, it sure seems like your healthcare team has failed you. I can't believe they are all so cavalier about your health.
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Riki, im sorry ur having mental troubles, so am i. I ended up going to mental health and hooking myself up with a therapist. its not ideal thing to have to do, but its better than letting urself slip into that scary place.
I wouldnt want a kidny from family, they would be likely to hold that over me. "You have to... I gave you my kidney"
Ive had a few people say they would give me a kidney if they could... but that was after i told them I cant have a transplant lol Wonder if they still will when I can get one? Im only 15 lbs from the weight they had said they wanted me at!
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you have to lose weight for a transplant? I've never been told that, and I weigh over 200lbs. I have been told that if I look like I'm trying to be more active, it looks good to the transplant team
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according to my neph i am...
I WAS alot more, but ive lost like close to 90lbs, (i think more, but still have fluid weight on) im 99k now
When i first saw him, he said ur too fat for transplant they would rather give a kidney to a drug addict than a fat person, u should starve yourself. I highly doubt u will ever lose enough weight for a transplant, ive been a neph for *blah* years and not once had a patient do it.
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what a jackass.. I can't believe he said that too you.. you're at 99kg? my dry weight is 100.5.. When I was on PD my dry weight was 108kgs, so I have lost some, but I think I was carrying much more fluid then, and not just the 2 litres of dineal in the abdomen.
I've never lost weight, unless I was sick. I used to live in downtown Charlottetown, and I walked everywhere because I didn't drive and at the time there was no public transportation. With all the walking I did, I didn't lose anything. I toned up, though, and what I probably would have lost in fat content I got back in muscle mass
I looked great, I felt great, and I lost the kidney anyway... so you never know.. ::)
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Yes he is a jackass....
This is the same dude that when i was on PD, I had told him somethings not right, my belly is swollen... I had 54lbs of fluid on me!! He told me... oh thats just ur normal anatomy... Excuse me? I think i know my own fatroll buddy......
Yes i went out at 99 saturday, and my ankles are still swollen im still having trouble breathing too, so im sure i still have more fluid...
To top it all off, hes got me as non-compliant (yes at one point i was... but for over a year now ive been doing really well....) AND he told me that, even if i lose the weight he doesnt thnk im mentally stable (i have some mental diagnosises) enough for a transplant???
i think its ridiculous, and my psychiatrist said that its the dialysis, and my neph making me crazy HAHA i liked that... I agreed wholeheartedly, between that and the other things that we go thru with D, its no wonder how nuts we can get ;)
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The following is a list of all of the really stupid things people have said to me re: Dialysis/ESRD, (and what I really wanted to say in response, but didn't) please feel free to add your own! I can't wait to read the responses ;D
Please note that I am paraphrasing as there is no way that I could ever remember EXACTLY what people have said to me:
1. "You don't look sick" (umm you don't look stupid, but you are :2thumbsup;)
2. "Just go get a kidney transplant." (sure I will go right on over to Walgreens and pick one up after all I think they are on sale this week :lol;)
3. "You don't look like you have kidney failure." (Yea I didn't know that Kidney failure has a look hmmmm :P)
4. on seeing someone that I have met just once or twice, "Oh yea you are the girl with Kidney failure." (oh yea you are the idiot :rant;)
5. "Since you have kidney failure, maybe you can tell me why my back hurts everytime I brush my teeth or go to the bathroom." (I don't even know what to say here other than 'WOW you are the biggest idiot that I have yet to meet.' :urcrazy; )
6. "It can't be that bad." (Here let me tie you down to this chair and then make you sit there for the next 5 hours and take away food and drink and never give it back to you, and please please let me stab you in the arm with a 15 gauge needles and pray that you infiltrate :bow; )
7. "Let me know if there is anything that you need." (yep just give me your kidney and I will be on my way thanks :o )
8. "There are people out there worst off than you." (you mean like you? a complete dumb a** >:D )
9. "It could be worst." (screw you :stressed; )
10. "What is that ugly thing on your arm?" (What is that ugly thing on your shoulders? oh yea it's your face ::) )
11. "Stay positive." (just get away from me with all your working organs please and thank you :bump; )
12. "What can/can't you eat?" (cardboard's good thanks :puke; )
13. "Your on Kidney dialysis?" (Uggggghhhhhhh :Kit n Stik; )
And this is all that I can think of right now.... although I know there is more I am just having a brain fart :lol;
Edited: Topics Merged - okarol/admin (Thanks Tracy!)
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:clap;
I especially like the "Cant you just have dialysis?" or " Just get a transplant " and that from family members! :banghead; " ee do you know id never thought of that, cause its THAT easy!!!"
And "you cant have bananas? im sure one or two wont hurt you" " Do you know your right, im sure all those Drs are wrong that if my potassium gets too high it could potentially stop my heart!" :sarcasm;
You have to laugh but i have sat them down and explained things to them and they still dont get it! :stressed;
Claire x
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Tracy:
I feel your pain/irritation.
"Dan you have Kidney problems?..."
1. "oh man sorry to hear about that.......oh, hey, i gotta new rear bumper for my truck...wanna see it???"
2. "wow.....did I ever tell you about my root canal?? It was REALLY bad.....I thought i'd never get over it"
3. "wow.....I think my aunt just died from that last week.......how long do they give you?"
---Dan
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Wow thanks for this post it really cheered me up and made me laugh. I haven't had any stupid comments but if I do I know were to post them :rofl;
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Love them all, especially the replies!! :rofl; I've got two:
"So are you done with that dialysis thing yet?" (Just as soon as you're done with that whole 'breathing thing'.)
And just last week, in response to my assertion that I was on hemo - not PD - a medical assistant said:
"Are you sure?" (Am I sure I didn't have abdominal surgery? Am I sure I don't have a foot-long catheter hanging out of my stomach? Gee, I don't know. Let me think about it and get back to you.)
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:rofl; OMG!!! those are great. I know I probably shouldn't be laughing, but I have grown up with some stupid stuff myself (not kidney related). I was burned when I was 6 months old with 2nd and 3rd degree burns over 35% of my body. Then add another 10 - 15% scar tissue from grafts. The stares and the comments and I'm not talking about the kids either! People can be so.... I don't know if stupid would be the word but clueless.
I have had people tell me my scars are ugly and asked me to wear long sleeves because it grosses them out.
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:rofl; Wow...I wouldn't even know where to start here.
Back when i was on dialysis for the 2nd time, my mom (who gave me my 1st kidney transplant) walked into my bedroom and saw all of my PD supplies and said "What's all this stuff for?" :rofl; I said "Mom, I'll give you one guess."
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Love them all, especially the replies!! :rofl; I've got two:
"So are you done with that dialysis thing yet?" (Just as soon as you're done with that whole 'breathing thing'.)
This one made me laugh so hard that I had to run to the bathroom before I peed my pants!!!! :rofl; :lol;
I love it!!!
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Tracy:
I feel your pain/irritation.
"Dan you have Kidney problems?..."
1. "oh man sorry to hear about that.......oh, hey, i gotta new rear bumper for my truck...wanna see it???"
2. "wow.....did I ever tell you about my root canal?? It was REALLY bad.....I thought i'd never get over it"
3. "wow.....I think my aunt just died from that last week.......how long do they give you?"
---Dan
I did not even go onto to mention these... I get this ALL the time.... people find out (or already know) that I have kidney failure and go on and on about their back aches and tooth aches and all other minor health probelms and yet they legit try to make it seem that it is worst than kidney failure."
I would like to just punch them in the face!!
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I have had people tell me my scars are ugly and asked me to wear long sleeves because it grosses them out.
Next time just for sh*t's and giggles say, "your face is ugly and its grossing me out so why don't you cover that up." :lol;
People are such friggin as*holes!!!!!!!
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i love your responses! And aww.. that's makes me sad when I saw "....oh, you are the girl with......" Some people don't know how to think before they open their mouth. I'm a caregiver to my husband but sometimes the rwxtion to "my husband's on dialysis" is "oh, (quiet enought to her a pin)- "sorry. God, that makes me feel horrible like he died. So me in my way, I use that opproyunity to explain to them some informaion about dialysis and how you live life to a great ability. He always gets the 'you look good". No one ever says anything to me. Your post really made my day and I'll be laughing about them for the rest of it. It's the way you came back to them that's great.
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"You don't look sick." Sorry, I forgot my "deathly ill" uniform today.
Sometimes the medical staff comments are even scarier. "Which kidney did they take out to put the new one in?"
Right now, I'm grinding my teeth over the same comment from the same ding-bat transplant nurse over and over. "Do you know you're supposed to stay hydrated?" Well, no shit, Sherlock.
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:rofl; :rofl; :rofl;
when dh first got dx and started dialysis, i told a friend, and reply was "oh gee thats almost as bad as my wife, she just had her gall bladder removed"..
went to Amish friend for coal way back when this started, reply was "my brother had that and now he's dead"
went back 8 months later, got "oh is your husband still alive?"..
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:rofl; :rofl;
Next time just for sh*t's and giggles say, "your face is ugly and its grossing me out so why don't you cover that up." :lol;
People are such friggin as*holes!!!!!!!
[/quote]
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:rofl; :rofl; :rofl;
when dh first got dx and started dialysis, i told a friend, and reply was "oh gee thats almost as bad as my wife, she just had her gall bladder removed"..
went to Amish friend for coal way back when this started, reply was "my brother had that and now he's dead"
went back 8 months later, got "oh is your husband still alive?"..
All I have to say to this is WTF???
and I hear you with the dumb medical providers saying stupid things here's a good one
me to my PCP re: a new medication, "Does this filter through the kidneys?
PCP, "Does it matter your kidneys are shot."
Oh and my all time favorite from the same PCP in response to me telling her that I was switching from Hemo to PD, "What is PD?" the kicker her husband is the over seeing dr. at my unit......... YIKES!
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Sometimes the medical staff comments are even scarier. "Which kidney did they take out to put the new one in?"
After my transplant I had my fistula removed as it was too large. Pre-op with the surgeon consultation "when did you last have dialyses?" I responded "about a year ago"...you sure you want to remove it and not go for dialyses today? Awesome...so you have read my chart??
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When people hear that Jenna has kidney failure and needs a transplant they ask, of course. "Is she on the list?"
I look at them and ask, "List?"
I love watching them try to explain it.
:rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :clap;
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When people hear that Jenna has kidney failure and needs a transplant they ask, of course. "Is she on the list?"
I look at them and ask, "List?"
I love watching them try to explain it.
:rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :clap;
I totally am going to do this the next time someone asks me b/c that is the number one dumb question I get.... I am going to act like I don't know what "the list" is and watch them squirm ;D
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Well, quite honestly, I get tired of the constant, "Oh, you're so young to have this happen to," comment. I'm so sick and tired of it. :Kit n Stik; ::) Renal failure can happen at any age!!
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Well, quite honestly, I get tired of the constant, "Oh, you're so young to have this happen to," comment. I'm so sick and tired of it. :Kit n Stik; ::) Renal failure can happen at any age!!
I get this one too....... with the sad face, head slightly tilted to the one side....... I wanna scream SHUT UP!!!
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My favorite response when I tell someone I have kidney failure is "both kidneys?" or "which one?". I especially love it when I hear my parents tell me a story of them telling one of their dr's or nurses and they say this. If it was only *one* kidney that failed, I'd be fine! Why do you think they let healthy people donate on of theirs? :stressed;
KarenInWA
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I use a wheechair too I haven't had any stupid comments about diaysis or kidney but many about my disability and the nasties ones usually come for elderly ladies or strangers they feel like they can ask you anything the worst I've had is "So can you have kids then?"
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I can relate, Tbarrett!
Oh, I also get, "here let me help you with that, you're the invalid,"
WTF!? :Kit n Stik; ::) >:(
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Yesterday afternoon I was a passenger in a car that got rear-ended VERY HARD and it felt like I'd been hit in the back by a sledgehammer. I was stunned and out of breath and wondering if I'd broken my back or not. I didn't want to move so just waited for the EMTs who applied a collar and taped me down to a board until I could get xrayed at the ER.
I was concerned about the EMTs poking around my belly and doing something stupid so I made sure to tell them that I was a dialysis patient and had a PD cath. One EMT came over to take my BP and at least had the sense to ask "Sir, which arm has the fistula?" (I do have a fistula even though I'm on PD right now.) I tried to explain that I was on PERITONEAL dialysis and both EMTs didn't even know what that was. "When do you have your next dialysis?" "Uhhh, I have a belly-full right now....and I do my own dialysis at home while I'm asleep." "Oh...I've never heard of that before! Most of the dialysis patients we deal with are almost dead and we have to rush them down to the center..."
Fortunately nothing was broken and I was released. Now another stupid thing is that the hospital ER I went to is LITERALLY across the street from my PD center. Before I was released I had notified my PD nurse of my injuries and she said that if I had to be admitted they'd have to transfer me to another hospital 20 miles away because the local hospital doesn't "DO" pd on patients. :banghead;
Well, I'm very sore but at least I think I'm going to be OK. :clap;
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I can relate, Tbarrett!
Oh, I also get, "here let me help you with that, you're the invalid,"
WTF!? :Kit n Stik; ::) >:(
My response would be, "Here come over here so I can make you invalid by punching you in the face." ;D :Kit n Stik;
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Oh! tb, I can sure relate to a lot of these wacko comments. But, for some perverse reason, your post has got me laughing madly. I had a lousy night after D and you have now brightened my day. I like your style, lady, I like your style!
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By no means am I a stick figure, but I am not huge either. I doubt that I have "I'm on dialysis" on my forehead, but nevertheless some lady decided that her two cents were necessary in my life. I was grocery shopping for myself, my boyfriend and my 8 month old son. My boyfriend can eat whatever he wants as he is healthy, so I was at the meat counter buying him some salami for sandwiches. An older lady came up behind me with an older gentleman, and when I say behind me, I MEAN RIGHT ON TOP OF ME!!. Number 1- I like my space, and to feel you breathing down my neck is kinda gross and uncomfortable!!! JEEZ!
So she began talking to the man with her about salt intake and whatnot...I assumed he had heart problems as I noticed a scar on his chest where his shirt was open. So anyway, I ordered the salami and she turns to me and without hesitation says: "Salami is so fattening for you, and the salt! Don't get me started! Are you sure you want to order that?!" Uh Number 2- What business is it of yours to tell me what to buy??!
I ignored her comments, smiled and left with my lunchmeat. I walked to the frozen food section and got some garlic bread...oh lo and behold here's the woman again...she says "Garlic bread has loads of sodium in it, and again, so fattening". I slammed the door shut and kept my mouth shut as well....
Aisle 5- soup aisle. I buy the low sodium tomato soup. As I'm reaching in for a can, the lady literally bumps me out of the way and tells me that soup is the worst possible thing for me! WTF!??? Number 3- Are you my mother? Are you my doctor? Do you personally know me in any way? UH NO!!!!"
I said "That's it. Lady, I don't care who you are, what your recommendations are, and frankly I feel sorry for the man with you, in hearing everything YOU have to say!" She looked at me, turned around and walked off sulking. :rofl;
I'm sure I could have said a few other choice words but I decided to keep it PG ;) Man oh man!
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Well, quite honestly, I get tired of the constant, "Oh, you're so young to have this happen to," comment. I'm so sick and tired of it. :Kit n Stik; ::) Renal failure can happen at any age!!
*Jeopardy theme music plays*
And the smart ass answer is.....
Oh, I don't think it it would be any better at your age, either!
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:rofl; :rofl; :rofl; :rofl; tb and Jbeany.
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Tracy you have made my day with your "responses"...LOL Usually I'm stuck for what to say "back" at the jerks who say such stupid moronic things, now I have some 'ammunition' :clap;
Annig83: I commend you for remaining calm and civil, not sure I could have done that.
And when people say things about "...you're so young to have this happen to you..." they don't realize they're implying that it would be OK for this to happen to an older person. Sheeeesh.
--Dan
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Tracy you have made my day with your "responses"...LOL Usually I'm stuck for what to say "back" at the jerks who say such stupid moronic things, now I have some 'ammunition' :clap;
Annig83: I commend you for remaining calm and civil, not sure I could have done that.
And when people say things about "...you're so young to have this happen to you..." they don't realize they're implying that it would be OK for this to happen to an older person. Sheeeesh.
--Dan
:bandance; :bandance; :bandance; :bandance; :yahoo; :yahoo;
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Oh! tb, I can sure relate to a lot of these wacko comments. But, for some perverse reason, your post has got me laughing madly. I had a lousy night after D and you have now brightened my day. I like your style, lady, I like your style!
YAY!! I love to help out a fellow IHD member!! Glad I made you smile :cheer: :yahoo; :2thumbsup; :rofl; :clap;
and don't tell anyone, but its part of my goal to become a celebrity here on IHD :lol; :rofl; :rofl; :rofl;
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If anyone says anything stupid to me, I look them straight in the eye and start talking about how heroic and brave live donors are, and that will shut people up sooner than slapping duct tape over their mouths.
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If anyone says anything stupid to me, I look them straight in the eye and start talking about how heroic and brave live donors are, and that will shut people up sooner than slapping duct tape over their mouths.
yea what is this... I noticed that everytime I mention organ donation they act like I am asking them to die for me...... they never know what to say...
I think its the fear of the unknown!!
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Best one from last month's surgery... The "Pain Management" team yanked my epidural feed without arranging for oral meds before hand. They didn't bother to inform the nurse until over half an hour later that I might need some of the oral meds they just wrote a scrip for. The nurse, of course, then has to order them from the hospital pharmacy, which then takes its sweet time getting around to sending them up. They finally got them to me, except it was way too late to stay ahead of the pain by then. Plus, I was having serious digestion problems, so nothing was moving orally into my system to actually dull the pain. By the time the Pain Management doc got backed to the room, I was chewing on a pillow trying not to scream, sweating a torrent, white as a ghost, and shaking violently enough to rattle the bed. Doc's only comment was...
" Gee, Ms. Beany, it doesn't look like your pain is being well managed."
I spit out the pillow long enough to snarl, "No shit." (Close as I could get to sarcasm when what I really wanted to do was tighten his tie until the knot reached the back of his neck.)
It took 32 units of morphine in under 8 hours to finally get me to a level spot again.
Gee, I love the prompt, concerned care you get in hospital....
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Ugh...I know, right? After the whole peritonitis episode, I dread going back into the hospital.. with the nurses who look down their noses as you, as if you're an inconvenience to them for being sick.... but I think this is a topic for another thread *L*
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I may have mentioned this before somewhere....
The last time I was in the hospital I could hear one of the nurses say something to the effect of....
All of the good patients are leaving today and we get stuck with the crappy ones...who never go home.
Of course I was one of the good patients leaving the hospital that day. :angel; :lol; ;)
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I got another one yesterday from my "mother in-law" no less. She was talking to my boyfriend and when he mentioned that I had a job interview this week, she basically lost it! Back story: it's for a floral shop making floral arrangements part time.
She said; "How can she work? She will lose all YOUR money" (In response, I'm thinking, uh, yes I love your son and we live together, but it's my disease and I'm the one getting disability payments, that I use to take care of myself, bills, my son, and yes, my boyfriend who is on pain management for Spina Bifida Occulta and currently isn't clear for work, but emphasizing that it's HIS money irked me).
" Her job is to be home with your son" (I've been home with my baby since he was born 3 months early and came home after 2 months in the NICU, I was unaware that it's 1953 and I should be barefoot and cooking dinner and cleaning the house all day; I never go out, I never see my friends, as they are not in the "mommy" mode at this time in their lives, and I don't have many hobbies because of having my son... I can get some of my painting in, but it's hard when you have a teething 8 month old! :P)
"What is she going to be doing? She can't and shouldn't be doing anything in her condition." (Number 1 I am cleared for work from my neph. 2- I am feeling great, 3-am on PD at night so my days are free (besides taking care of my son Carson),4- I would like to meet new people, and do something I like doing and feel accomplished).
"You (my boyfriend)l should be the one working, not her" (If he could work don't you think he would be? UGH)
"How long is she going to be on dialysis?" (Um for the 50th time, till I get a transplant, I've only told you this each time you've called.) :banghead;
I am worried about leaving my son all day as I haven't been away from him more than 1 night, but I think this job (If I get it) will be good for me. I just don't understand how she doesn't understand that!! :stressed;
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How sweet of her, Anni! Was she a stay-at-home mom? Maybe she figures she stayed and went slowly crazy - you should have to do the same!
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One idiot asked me if i was a drug addict/ not amused
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I used to teach at a university and my first fistula was in my left forearm which often had bruises or bandaids or scabs. A student who knew me quite well since she'd taken a course with me the year before told me that there was speculation that I was perhaps a junkie and she hoped I wouldn't be mad she was asking me about it but she'd told the "speculators" that she felt sure I wasn't but "hey you never know". I found this hilarious actually (I was very amused) so the next class I planned a 15 minute segment (turned into pretty much the whole class) on kidney disease, dialysis, organ donation etc. I was on home hemo and this was in a small town in Nova Scotia (Wolfville) so I invited anyone interested to come for a visit while I was hooked up. A few took me up on it and most of the class signed the organ donation portion of their driver's licenses. This was in 1980.
What can seem like clear stupidity is sometimes just sheer ignorance but either way I try to never miss an opportunity to weasel potential transplant organs out of people.
No, the folks I stand dumbfounded in front of are the ones who won't donate after death in case they "need" them for the "afterlife". :urcrazy;
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Monrein.. you were on HOME HEMO... in WOLFVILLE.. in 1980???? That just blows my mind... Since my doctors are based in Halifax, and they really don't seem too keen on letting anyone outside the watchful eyes of the dialysis nurses...
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What can seem like clear stupidity is sometimes just sheer ignorance but either way I try to never miss an opportunity to weasel potential transplant organs out of people.
No, the folks I stand dumbfounded in front of are the ones who won't donate after death in case they "need" them for the "afterlife". :urcrazy;
It's official... I just peed my pants from laughing so much!!! :lol; people sure are :urcrazy; !!!!!!!!!!!!!!!!!!!
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Monrein.. you were on HOME HEMO... in WOLFVILLE.. in 1980???? That just blows my mind... Since my doctors are based in Halifax, and they really don't seem too keen on letting anyone outside the watchful eyes of the dialysis nurses...
Ha...I self-cannulated, did D in Wolfville during the winters (2) and at my cottage in Ontario in the summers (3) so two different teams of home dialysis people and two totally different machines. The machine tech in Ontario used to come to the lake as his last appointment for the day and then stay for supper and a swim. My machine in Wolfville caught on fire once...less dramatic than it sounds but smoke was puffing out the front while I was still attached...ah yes, dramas of the early days. I used to encourage everyone to do their own needles then too and I still do.
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"My machine in Wolfville caught on fire once....while I was still attached."
Good grief monrein!!
---Dan
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What can seem like clear stupidity is sometimes just sheer ignorance but either way I try to never miss an opportunity to weasel potential transplant organs out of people.
My sentiments exactly. I'd rather people say ignorant things so that I can pull out my soapbox and wax lyrically about the heroes who consider organ donation. That's better than having people not bother to say anything at all. There's nothing wrong with being ignorant. Being ignorant is not the same as being stupid. I'm ignorance about 16th century Chinese poetry, but that doesn't make me stupid; I can learn about 16th century Chinese poetry if someone cares to teach me.
Last year, my husband and I were on holiday in Michigan, and we ate at one of those restaurants that cover their tables with paper that you can draw on with the crayons that are supplied along with the menus. So I took the opportunity to scribble "I need a kidney. Donate Life." in every color I could. :rofl;
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"My machine in Wolfville caught on fire once....while I was still attached."
Good grief monrein!!
---Dan
I shut it off right away, and was all set to hand crank my blood back when my "clever" (sounds better being sarcastic here than accurate) husband thought it would be a good idea to turn it back on to see where the smoke was coming from exactly. Well, yep it was coming from somewhere inside the bloody (about to get bloodier if I had to rip needles and run) machine...so I calmly turned it back off, hand cranked, called Halifax for the tech. He came the next day but without the appropriate burnt out bit (it was a wire whose plastic covering got too hot and started to smokily smolder) so he had to come back again the day after and I was back in business.
Umm, my husband never needled me either btw, since the one time the nurses thought he should try it, he jammed the thing right into my bone, not realizing that it was "so sharp". He felt truly awful and apologized for months but what can I tell you other than he's smart but not handy.
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Yesterday afternoon I was a passenger in a car that got rear-ended VERY HARD and it felt like I'd been hit in the back by a sledgehammer. I was stunned and out of breath and wondering if I'd broken my back or not. I didn't want to move so just waited for the EMTs who applied a collar and taped me down to a board until I could get xrayed at the ER.
I was concerned about the EMTs poking around my belly and doing something stupid so I made sure to tell them that I was a dialysis patient and had a PD cath. One EMT came over to take my BP and at least had the sense to ask "Sir, which arm has the fistula?" (I do have a fistula even though I'm on PD right now.) I tried to explain that I was on PERITONEAL dialysis and both EMTs didn't even know what that was. "When do you have your next dialysis?" "Uhhh, I have a belly-full right now....and I do my own dialysis at home while I'm asleep." "Oh...I've never heard of that before! Most of the dialysis patients we deal with are almost dead and we have to rush them down to the center..."
Fortunately nothing was broken and I was released. Now another stupid thing is that the hospital ER I went to is LITERALLY across the street from my PD center. Before I was released I had notified my PD nurse of my injuries and she said that if I had to be admitted they'd have to transfer me to another hospital 20 miles away because the local hospital doesn't "DO" pd on patients. :banghead;
Well, I'm very sore but at least I think I'm going to be OK. :clap;
You know what? this hardly surprises me. I am a nurse and can honestly say we received little to no training on PD. When we studied the renal system of course we talked about hemo and did clinicals in that setting. But PD? Not even mentioned. The first time I even learned the term Peritoneal Dialysis and it was explained to me was the day I was rushed to hospital and nephrologist suggested this modality for me. Healthcare professionals learn a broad overview in school and then move on to their "Specialties". But basically they are ignorant in any other area but their specialty (myself included).
But I am glad you are ok and you made it through the accident. Ive been in situations where healthcare professionals outright scare me! Like when I had a central line. Coming at me with a syringe, no gloves (certainly didnt observe any handwashing), no mask and no alcohol to scrub the port. I send those idiots away.
My favorite dumb line is: "Oh my such and such had kidney failure too...but they died." (Umm...why someone feels they should share that is beyond my understanding).
My other favorite: "You should drink more water to flush your kidneys." (Right on that)
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I wouldn't call the following "ignorant," but it was a bit insensitive:
While I was being dialyzed at my dialysis center, my social worker said to me:
"Do you know how many years you have left [to live], RightSide?"
[then she held up her right hand with 5 fingers extended]
I replied, "Aren't you supposed to be boosting my morale?"
I understood what she meant: "Get yourself a transplant and get out of this place before it's too late!" Of course, since I had no living donors, that was easier said than done.
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not only is it insensitive, it's not true. A friend of mine, who's been on dialysis for most of his life, has been dialyzing now for 30 years. He has no prospects for transplant. He's one of those people where transplantation just doesn't work. I don't see him living to a ripe old age, unless there's some new, incredible medical breakthrough, but I don't see him giving up anytime soon either.
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Well, my mom was the classic statistic...she lived for 5 years on in-clinic dialysis, but then again, she was in her late 70s-early 80s and had congenital heart failure, but for any clinic staff to believe that that's the case for all patients is just silly.
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Well something totally irratating that Aaron's granny has been constantly keeping me updated on the fact that this neighbor (who they dont like) have had 7 people in their family tested to give the one son who is on dialysis, a kidney. Which I am of course so happy for this man suffering and that he is getting a kidney but what pisses me off is that Aaron's family was SOOO against him donating a kidney to me. They were making up horror stories and continually discouraging him from donating. (You could hear a collective sigh when he wasn't a match) So why does she care so much about this person's situation and could care less about mine?? :urcrazy;
whatever! :p
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At least they shared an opinion. The only person in my family who I've asked that's given me an answer was my brother, and he said no.
Then they all promote organ donation on their facebook pages. bunch of hypocrites.
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I think I got you all beat when it comes to dumb (more like hurtful things) family has said re: kidney donation...
I had my only blood brother ready to go be tested as is my half sister... then my father convinced them both not to be tested then said to me and I will quote him, "I don't want Paulie (Brother) to be tested because I do not know what I would do if something were to ever happen to him."
you can pick your friends not your family!!!
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Tbarrett, I think you should get some sort of prize for that story. I'm speechless, and THAT's a rare occurrence. Unbelievable.
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Tbarrett, I think you should get some sort of prize for that story. I'm speechless, and THAT's a rare occurrence. Unbelievable.
:)
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At least they shared an opinion. The only person in my family who I've asked that's given me an answer was my brother, and he said no.
Then they all promote organ donation on their facebook pages. bunch of hypocrites.
hypocrites and jerks!
I think I got you all beat when it comes to dumb (more like hurtful things) family has said re: kidney donation...
I had my only blood brother ready to go be tested as is my half sister... then my father convinced them both not to be tested then said to me and I will quote him, "I don't want Paulie (Brother) to be tested because I do not know what I would do if something were to ever happen to him."
you can pick your friends not your family!!!
What about if something would happen to you? OMG families are infuriating sometimes!! Aagghh! :stressed;
Well ladies at least we have each other! :cuddle;
xo,
R
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AT LEAST THEY DON'T WANT THE MONEY YOUR DEAD MOTHER LEFT TO YOU TO HELP PAY YOUR MEDICAL BILLS BECAUSE YOU HAVE A FLIPPING INCURABLE DISEASE!!!!! :rofl;
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AT LEAST THEY DON'T WANT THE MONEY YOUR DEAD MOTHER LEFT TO YOU TO HELP PAY YOUR MEDICAL BILLS BECAUSE YOU HAVE A FLIPPING INCURABLE DISEASE!!!!! :rofl;
wow moosema all these threads are coming full circle into each other aren't they? the world makes sense yet again! :)
xo,
R
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I have a story that left me speechless. A friend of mine, someone I've known for years and who is friends with my mom as well and who has been "in" on all of my health issues since they started, provided this gem.
So my friend (let's call her Jackie) was pregnant. It's her third child. Every time she's been pregnant, she's failed her first glucose test and her doctor requires her to go through an extended one. So, the day after the extended glucose test, she was describing to me what it was like. She had to drink this awful stuff and then have blood drawn every thirty minutes for 4 hours to see where her glucose levels were. I was very sympathetic and told her so. Her reply...wait for it.."It was awful and you just can't understand what's it like to have sit in a doctor's office and be poked with needles for four hours." My reply, "I think I can imagine it." To which she responded, "NO. YOU CAN'T! Unless you've done it, you just won't understand." This conversation occurred 6 month after I started in-center hemo.
Really? Really? I think if there's one thing I can understand, it's sitting in a chair being poked with needles. Ridiculous.
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brandi1leigh, surely you are making that up because that is just too bizarre to be true. Ouch...I just fell out of my chair.
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Plus what they don't get is our needles are much bigger!
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I know! I've had people whine about blood tests to me, until I showed them what a 15 gauge looks like and told them I stuck them in my own arm. 22 gauge butterfly needles are not enough to whine about unless you have an actual needle phobia!
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[...shaking my head in amazement.....]
---Dan
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I have a story that left me speechless. A friend of mine, someone I've known for years and who is friends with my mom as well and who has been "in" on all of my health issues since they started, provided this gem.
So my friend (let's call her Jackie) was pregnant. It's her third child. Every time she's been pregnant, she's failed her first glucose test and her doctor requires her to go through an extended one. So, the day after the extended glucose test, she was describing to me what it was like. She had to drink this awful stuff and then have blood drawn every thirty minutes for 4 hours to see where her glucose levels were. I was very sympathetic and told her so. Her reply...wait for it.."It was awful and you just can't understand what's it like to have sit in a doctor's office and be poked with needles for four hours." My reply, "I think I can imagine it." To which she responded, "NO. YOU CAN'T! Unless you've done it, you just won't understand." This conversation occurred 6 month after I started in-center hemo.
Really? Really? I think if there's one thing I can understand, it's sitting in a chair being poked with needles. Ridiculous.
Time to invite "Jackie" sweetie into clinic for a wee visit while you're there..on the other hand you could send her a YouTube video of someone self-cannulating.
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I have a story that left me speechless. A friend of mine, someone I've known for years and who is friends with my mom as well and who has been "in" on all of my health issues since they started, provided this gem.
So my friend (let's call her Jackie) was pregnant. It's her third child. Every time she's been pregnant, she's failed her first glucose test and her doctor requires her to go through an extended one. So, the day after the extended glucose test, she was describing to me what it was like. She had to drink this awful stuff and then have blood drawn every thirty minutes for 4 hours to see where her glucose levels were. I was very sympathetic and told her so. Her reply...wait for it.."It was awful and you just can't understand what's it like to have sit in a doctor's office and be poked with needles for four hours." My reply, "I think I can imagine it." To which she responded, "NO. YOU CAN'T! Unless you've done it, you just won't understand." This conversation occurred 6 month after I started in-center hemo.
Really? Really? I think if there's one thing I can understand, it's sitting in a chair being poked with needles. Ridiculous.
Wow. Just WOW
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I wish I was making it up. She's said some other gems but that one's my favorite. Sometimes you just have to laugh at that kind of thing.
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i think its interesting that some people think a grain of sand is a huge problem, versus their neighbors sandcastle.
One person may handle a situation like ours alot better than another.
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I have a story that left me speechless. A friend of mine, someone I've known for years and who is friends with my mom as well and who has been "in" on all of my health issues since they started, provided this gem.
So my friend (let's call her Jackie) was pregnant. It's her third child. Every time she's been pregnant, she's failed her first glucose test and her doctor requires her to go through an extended one. So, the day after the extended glucose test, she was describing to me what it was like. She had to drink this awful stuff and then have blood drawn every thirty minutes for 4 hours to see where her glucose levels were. I was very sympathetic and told her so. Her reply...wait for it.."It was awful and you just can't understand what's it like to have sit in a doctor's office and be poked with needles for four hours." My reply, "I think I can imagine it." To which she responded, "NO. YOU CAN'T! Unless you've done it, you just won't understand." This conversation occurred 6 month after I started in-center hemo.
Really? Really? I think if there's one thing I can understand, it's sitting in a chair being poked with needles. Ridiculous.
Time to invite "Jackie" sweetie into clinic for a wee visit while you're there..on the other hand you could send her a YouTube video of someone self-cannulating.
Here...send her mine. :rofl;
http://www.youtube.com/watch?v=g4-u04Jh3XM
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My reply, "I think I can imagine it." To which she responded, "NO. YOU CAN'T! Unless you've done it, you just won't understand." This conversation occurred 6 month after I started in-center hemo.
Really? Really? I think if there's one thing I can understand, it's sitting in a chair being poked with needles. Ridiculous.
That's when I'd've whipped out the 15 gauges, shoved them under her nose and said, "Three times a week, BAYBEE, for the rest of my life. Wanna trade places?"
The freakin' nerve of some people. :Kit n Stik;
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I wish I was making it up. She's said some other gems but that one's my favorite. Sometimes you just have to laugh at that kind of thing.
That's true. And after you finish laughing, you come to IHD and tell us all about it so that we can get a good giggle out of it, too. ::)
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I had to come find this thread because I have a corker of a story...
I had to go to the transplant center over in Chicago today for my cardiac consult. Took two hours in the morning traffic, and it was bucketing down with rain. Last year, they let me have my consult with a local cardiologist but this year, they wanted me to go to a guy at the transplant hospital. God forbid anyone think of the convenience of the patient... ::)
So since the center is a training hospital, I had to first be examined and then questioned by a student resident. OK, fiine. This is part of that scintillating conversation (paraphrased):
(resident) So, you're on the which list?
(me) Kidney.
(him) And what's wrong with your kidneys?
(me) I have fsgs.
(him) Why do you have that?
(me) I got nothing. I'm not even sure I heard the question right. Uh, hm.. I JUST DON'T KNOW! Hey, you haven't done your nephrology rotation yet, have you.
It was a long day. ::)
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....continuation
(you) it was my turn, you never know, you could be next....just my luck, and now I have you, another case of FSGS...f****** strange goofy student.
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OR
(me) Yeah, I should have chosen some other horrible disease.
He seemed really out of his depth. He was either nervous, or else I bored him, because he kept asking me the same questions and I had to keep repeating myself. I cannot IMAGINE that I could BORE him, though! :rofl; I have whining down to a fine art!
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My latest wasn't the comment - it was the tone of surprise that went with it.
I just had my last follow-up with the surgeon who did my abdominal repair. I was asking questions about specific exercises and activities I was going to be allowed to do, both now and in the future. He demonstrated a few, and said that an upright posture was really, really important to help restrengthen the damaged abdominal muscles. He told me that back pain was one of the most common complaints from patients recovering from similar surgeries.
I said I'd already figured that out - and I'd spent about a week while I was still housebound walking around with a book on my head (just like Grandma told us to do when we were dumb enough to think being in a beauty pageant would be cool!) because I had realized I was getting back pain from hunching to protect my guts and from the stress of the shortened muscles that had been forcibly pulled back into place in the center.
"You are really self-aware with your health issues!"
Well, duh. I've been seeing this guy on a regular basis since January - and it took him this long to figure that out?
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Well, someone has to be aware of our health issues because doctors often aren't. ::)
Good for you!
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This isn't what people have said, but more along the lines of how people prioritize what is important in life.
1) when people start complaining how bad work gets. I can understand that work isn't fun, but it is something we must do to pay the bills. But if work is your only sticking point in life, try doing dialysis.
2) no offence to facebook users, but recently in the news there is an uproar in the facebook community about the recent changes facebook has made. People were complaining about how they abhor the changes, and it sounded like it was life altering. Hmmmm, try being diagnosed with kidney disease and let's see how life altering that really is.
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This isn't what people have said, but more along the lines of how people prioritize what is important in life.
1) when people start complaining how bad work gets. I can understand that work isn't fun, but it is something we must do to pay the bills. But if work is your only sticking point in life, try doing dialysis.
2) no offence to facebook users, but recently in the news there is an uproar in the facebook community about the recent changes facebook has made. People were complaining about how they abhor the changes, and it sounded like it was life altering. Hmmmm, try being diagnosed with kidney disease and let's see how life altering that really is.
AFRIGGINMEN!!!
How about when people complain and actually want sympothy for having tooth aches, hang nails, back aches etc. I always say to people that I will trade any day of the week for their "terrible" problem...
Or even better how about the people that "claim" they have all these illness' when really all they want is someone to feel sorry for them, I want to slap the hell out of them and say "being sick" is really no walk in the friggin park!!!
IDIOTS, I telll you, people are friggin idiots!!!!
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This isn't what people have said, but more along the lines of how people prioritize what is important in life.
1) when people start complaining how bad work gets. I can understand that work isn't fun, but it is something we must do to pay the bills. But if work is your only sticking point in life, try doing dialysis.
2) no offence to facebook users, but recently in the news there is an uproar in the facebook community about the recent changes facebook has made. People were complaining about how they abhor the changes, and it sounded like it was life altering. Hmmmm, try being diagnosed with kidney disease and let's see how life altering that really is.
AFRIGGINMEN!!!
How about when people complain and actually want sympothy for having tooth aches, hang nails, back aches etc. I always say to people that I will trade any day of the week for their "terrible" problem...
Or even better how about the people that "claim" they have all these illness' when really all they want is someone to feel sorry for them, I want to slap the hell out of them and say "being sick" is really no walk in the friggin park!!!
IDIOTS, I telll you, people are friggin idiots!!!!
Took the words out of my mouth. If a hang nail is the only real problem they have, I'll more than gladly trade places.
I try not to complain about doing dialysis or have anyone feel sorry that i am on dialysis, this is the hand that was dealt so I gotta deal with it. Others that don't have a chronic illness but manage to complain, sorry, talk to the hand :rofl; :rofl;
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heh or u could be like my brother and say things like
"i WISH i could trade places with you" or " My life is soo terrible, i wish i was dead"
I try to remind him or others gently that at least u have health, a job, a roof, clothes, and food... some people dont have any of that!
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:rofl;
picked up a cabinet today at thrift store. 2 guys loaded it for me, told them it was for my husbands dialysis supplies. one guy says his aunt has been on dialysis for 13 years.."NEITHER of her kidneys work now!" :rofl;
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I would like to ask everyone a question.
When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?
What are your thoughts about more education during treatments?
Do you want to be involved in where the clinic's standings are?
These are items that I've come across during my 18 years and would like input from the experts...YOU!
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I would like to ask everyone a question.
When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?
What are your thoughts about more education during treatments?
Do you want to be involved in where the clinic's standings are?
These are items that I've come across during my 18 years and would like input from the experts...YOU!
YES!! education would be nice....ask anyone at my unit what PD is and no one can tell you!!!! its sad and as for the nurse's and techs talking/tellin me their personal busniess... i think its one of 2 things 1. they hook so many people up a day that they just don't care anymore, and 2. they actually start to feel comfortable talking about personal things with patients b/c they see them so much that they feel "close" to them....... however to be honest with you, I don't really care to hear about what they all got going on and wish they would just shut the hell up, I am not there for social hour, I am there to stay alive and I could give a shit less about what they all got going in in their life!!!!
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I would like to ask everyone a question.
When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?
What are your thoughts about more education during treatments?
Do you want to be involved in where the clinic's standings are?
These are items that I've come across during my 18 years and would like input from the experts...YOU!
I'm all for more education, but I'm not sure others would be. I think the staff at my center is willing to educate those that show an interest. I know if I ask a question, I will receive a comprehensive answer. But, I also realize that I might be a more informed patient than some of the others as well. I've only been in the dialysis world for a short time, but I've spent my days doing research...reading, reading, reading...so that I can be an active participant in my own care. But in talking with others on my shift, I don't think I am typical at all.
As for the sharing, I don't mind chit chat with the nurse while I'm getting hooked up at all. But there is a tech that will occasionally just approach me to talk out of the blue. Sometimes I feel a little awkward about it. I know she is just being friendly, but there are times I just don't have the energy to work up the polite responses. KWIM?
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tbarret and Subeat...THANK YOU! I have tried so hard to get my coworkers to shut the hell up about personal life! I will engage in small talk- but it's centered around my patient.
And you're right! We are there to car for YOU!
I appreciate the input! :thx;
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I would like to ask everyone a question.
When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?
I live in a small place. One of my nurses is also a neighbor, and several of them I've known longer than I have my best friend. Others have mutual friends with me, and/or I know their children, because I went to school with them. I don't mind hearing about their family, or about how their vacations went.
What are your thoughts about more education during treatments?
Depends on who's doing the educating, and what the subject is. I have educated them on many different aspects of Star Trek, and I have had a conversation with one of them on which type is the better vampire. She likes Vampire Bill, I like Lestat. *shrugs*
Do you want to be involved in where the clinic's standings are?
I don't know what that means.
All in all, I have a good relationship with the nurses that work in my unit. They're all friendly, fun-loving, they don't mind joking and laughing. I think you need that in order to build the trust that is required to have these people stab you with drinking straw needles 3 times a week. For those who say that it's not social hour, why not? For me, it's the only time I get out of the house
I also think your question probably should be spliced into another thread of it's own.. but I'll let the moderators decide on that one. *G*
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Riki,
Thank you for your input. I am still kinda new to the site (2 days) and thought this was the right place to post...
When I spoke of the clinic standings... Each clinic is scored on different aspects of the clinic..... hgb, accessess, no shows, hospitalizations... Our Regional manager always says that the patients in his other clinics are always asking about it.
Again, thanks.
If I'm in the wrong area, I'm sorry. :)
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My dear friend looks at me and says: "I just can't get enough to drink today, you know!"
I said: "I wish"
What do you mean?
I explained the limited fluid I have during a day then dared her to do it for a day!
Wanted to slap her upside the head as she was into my ice supply heavily that day!
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So my whole life I have struggled with diabetes, although it's not what caused my kidney failure. When I started dialysis, my blood sugars magically dropped and I was taken off of all my diabetes meds. After 2 years, my sugars have started crawling back up, so I called my general practitioner this morning. I talked to his Physician's Assistant. It is important to note that she is a trained medical professional.
Me: I've been monitoring my blood sugar and its running high. What does Dr. X want me to do?
Her: Well are you symptomatic at all. Have you been urinating more?
(Pause) Me: I'm in kidney failure. I don't really urinate.
Her: So you're not symptomatic?
Me: Well I've been taking my sugars and they are high.
Her: But you're not urinating more.
Me: My kidneys don't work.
Her: I guess I'll leave a note for the doctor.
Please do! Jeez. Really inspires confidence in my medical "team." I understand that she works for GP and probably doesn't see a lot of ESRD patients, but really I had to tell her twice. Shouldn't she know something about how the body works?
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DH enjoys hearing all the news, and we have developed a close relationship with most of nurses/techs there. i think this is a key to the better care he gets. he asks questions and they train him as they go. some of the other patients who come in and ask nothing, talk to no one, show no interest, i think they just get their treatment and leave.
our HH nurse who will train us, was our PD nurse also. we know all about her and her family and she likewise. this way we are more than a chart. it makes us real and we all feel more part of a team.
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DH enjoys hearing all the news, and we have developed a close relationship with most of nurses/techs there. i think this is a key to the better care he gets. he asks questions and they train him as they go. some of the other patients who come in and ask nothing, talk to no one, show no interest, i think they just get their treatment and leave.
our HH nurse who will train us, was our PD nurse also. we know all about her and her family and she likewise. this way we are more than a chart. it makes us real and we all feel more part of a team.
I think wheather or not people like or dislike (I am a dislike) small talk, sharing of personal business, etc is based on every indivdual!! :)
Me......... I really could care less what someone else has got going on in their life when I have so much going on in mine that its hard to keep up with all of it so i would rather that they just hook me up, and leave me alone (when I was doing in-center Hemo)
I also think that some people confuse being friendly as something more than what it really is..... me personally I always change the subject real quick when someone starts talking about their personal lives, but that's just who I am :angel;
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Me? I enjoy talking to people. The funny thing is, I tend to be private about my own life. I have worked with the public all my working life & I discovered many years ago that people love to talk about themselves. When I was working in gas stations, my co-workers used to tease me that I could get a person's life story in 2 minutes or less. Even the police mentioned it one day! There had been an incident at the station & the cops asked me about the victim (who I had never seen before. They were surprised & a little suspicious at the amount I was able to tell them. That is until they stood there & watched me work. They commented on how much info I got from people. I just love people. I find them interesting especially the elderly. They have experienced things that are just "history" to me. However, I DON'T want to hear about things that I consider particularly private eg. Your sex life!
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A few weeks ago, one of the nurses (who is younger than me) hurried out of the treatment room and into the waiting room when I arrived, with her phone in her hand. My chair would still be a few minutes, but she wanted to show me a picture of the ultrasound of her baby. She's due in February. A year ago, she was showing me pictures of her wedding. I enjoy this.
I only see one of the nurses outside of the unit, and that's because she's a neighbor, and lives up the street from me. I was in the unit before she was, and I only knew her to see her before she started. I found out later that I also went to school with her younger brother.
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I had to go for a ultrasound of my lower abdomen. The radiologist rang if I could drink as much as poss cos my bladder needed to be full. I said I couldn't cos I have no kidneys, so no liquid gets to my bladder. She said, well just try....
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So....
Phone call from dialysis clinic: Would you like to come to a Care Plan meeting?
ME: Yes. But at a time I can come.
Them: How about 10:45 a.m.?
ME: Not going to happen I work 6:50 to 2p.m. How about we make it when I can come?
Them: I'll get back to you on what the doctor says.
You would think they would schedule it when I CAN come! It is MY care plan after all.
I have a 6:30 p.m. meeting on Wednesday.
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I had to go for a ultrasound of my lower abdomen. The radiologist rang if I could drink as much as poss cos my bladder needed to be full. I said I couldn't cos I have no kidneys, so no liquid gets to my bladder. She said, well just try....
:rofl; Don't know why it's not working for you - after all, she tried to talk with her foot in her mouth, and it worked for her!
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I had to go for a ultrasound of my lower abdomen. The radiologist rang if I could drink as much as poss cos my bladder needed to be full. I said I couldn't cos I have no kidneys, so no liquid gets to my bladder. She said, well just try....
That was pretty stupid on her part. Just goes to show that most people don't listen.
EDITED: Fixed Quote Error - Bajanne, Moderator
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I had to go for a ultrasound of my lower abdomen. The radiologist rang if I could drink as much as poss cos my bladder needed to be full. I said I couldn't cos I have no kidneys, so no liquid gets to my bladder. She said, well just try....
Oh, you have to tell us what happened next!
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I had to go for a ultrasound of my lower abdomen. The radiologist rang if I could drink as much as poss cos my bladder needed to be full. I said I couldn't cos I have no kidneys, so no liquid gets to my bladder. She said, well just try....
. Well? Did they get upset that you didn't follow their instructions?
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I just have a hard time trying to understand the comments when people learn of your fluid restrictions. Usually the reaction is "OH MY GOD - I would just DIE if I couldn't drink my diet coke/Mt Dew/Water/whatever." I want to ask them "do you walk up to people in wheelchairs and say OH MY GOD I would just DIE if I couldn't walk..."
Of course I don't mind people eating and drinking things I can no longer partake in - but the comments and ensuing discussion don't make it any easier.
I had just gone back to one of my volunteer activities and had a similar reaction from someone there. Within seconds of me telling her of the restrictions - she got up and said "I'm getting a water, do you want one?" I know- she did it out of habit and not malice....but really, only seconds had passed.
I was visiting friends who normally invited me over for dinner - I kindly explained that I would kindly defer on the meal but I would stop by for socializing afterwards. They simply would not believe that i was to restrict fluid because he had heard that water was good for kidneys. (FUNCTIONING kidneys, I kindly reminded him) and when I refused all offers for a drink - he still brought me a 44 ounce cup filled with ice water and sat it beside me. GEEZ! I can't imagine what he would do if someone identified as an alcoholic. :rant;
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I hate it when someone says to me, "But you don't look sick!". Just how am I supposed to look?!
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Agree with you completely CebuShan. I've had more people tell me "you look good". I guess that's better than "you look like hell", but still...
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I kind of like the surprised "you look good!" comments. Actually, I probably look a heck of a lot better than I did a couple of months ago when I felt like @#$%.
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I would like to ask everyone a question.
When you're at D, what are your thoughts when your Tech or RN tells you EVERYTHING that's going on in their life...family, kids, shopping, what they did the past weekend....very personal things?
What are your thoughts about more education during treatments?
Do you want to be involved in where the clinic's standings are?
These are items that I've come across during my 18 years and would like input from the experts...YOU!
I dont mind when they talk to me personally, it makes me feel like they truly care, rather than just paid to care....
Of course there is a line, i know of one of our gals, who was fired a looong while ago, she crossed that line with me (and apparently others?) but other than that one person, i havent had any problems with any of the staff talking "personally" to me.
Its never too personal, and its just relaxing to listen rather than realize what is happening to me. and as u know, i cant speak when im getting stuck lol
as far as the other stuff, im just there to live, and i know u all are the best in the area, much better than my previous clinic. I love seeing u guys at CU dialysis' smiling faces. I feel like, much like this site, it is a second (or third) home to me.
So as far as "standings" go, it doesnt really matter, because i know u are the best for ME. that may not be true for everyone though.
as far as education, i prefer to sleep during treatment... unless it is vital, i dont really want to be bugged lol makes treatment go much faster!!!
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I have a friend who just had her second child, and it set off some strange kidney issues with her. She is currently under the care of a nephrologist. At her appointment this past week, she overheard another woman with a small child in the room next door;
She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."
My friend instantly called me. I was instantly furious... :rant;
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She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."
My friend instantly called me. I was instantly furious... :rant;
And when she finally IS on dialysis, I bet those words haunt her for a long, long time.
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This reminds me of something that happened a few years ago in the neph's waiting room:
Myself and another woman had started chatting, as you do sometimes, over incidental things, and were quite relaxed and enjoying our conversation. The patient and her daughter, that had been in seeing the neph, came out, and the daughter said to her sister, who had waited outside, 'We've been told to go straight to the hospital and she (the mum) needs to start dialysis NOW!"
The woman I'd been chatting with just looked at me, stunned, and I right back at her. I remember being so horrified by witnessing this life changing moment for the family (and my worst nightmare - at that time - acted out before me) that we didn't speak another word to each other, just sat with our own thoughts until the doctors called one of us in.
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I have a friend who just had her second child, and it set off some strange kidney issues with her. She is currently under the care of a nephrologist. At her appointment this past week, she overheard another woman with a small child in the room next door;
She said "I wish my kidneys would just fail already, so I can get on dialysis and be done with it."
My friend instantly called me. I was instantly furious... :rant;
In a way, though, I can understand that. If she's at the point where she's close, and every appointment with the neph is a nerve-wracked period spent wondering how bad the news is going to be, having a course of action can be preferable. She doesn't realize, of course, how fondly she's going to look back on time pre-D before her life was scheduled and her diet and fluid intake drastically restricted, but who among us really did know that?
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I'm into makeup and going to the beauty parlor and despite being on dialysis, I still do it all. A number of people have commented about my appearance. The daughter of an elderly patient said, "Oh, it hasn't gotten to you yet." Or, "Do you still urinate?" a tech asked me.
"Yes," I said.
"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."
Lovely! Just lovely! I try my best to always put on a happy face. And just ignore assholes.
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"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."
"Perhaps, but I'll still look twice as good as you."
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I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?
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I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?
Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own. And may the fool suffer an anal fistula just to demonstrate to difference!
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I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?
Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own. And may the fool suffer an anal fistula just to demonstrate to difference!
have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome. I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online
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I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?
Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own. And may the fool suffer an anal fistula just to demonstrate to difference!
have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome. I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online
Yeah, they tend to only post the pics of the worst case scenarios.
My thought on the fool who thinks they aren't as bad as the description makes them sound doesn't get that we are trying to keep an unnatural surgical revision in working order - something that can involve multiple surgeries, stents, and ballooning, not to mention infiltrations and that electric shock feeling that comes with having the tech ram a nerve with a giant needle.
A naturally occurring fistula, while not a good thing, is something that you treat to make it go away and hopefully never have to deal with again.
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Stupid thing said by my NEPHROLOGIST yesterday.
Dr.: I'm really concerned by how much EPO we have to give you. But the alternative is more blood transfusions and that's not good either.
Me: I don't know what the answer is.
Dr.: Me either. I guess we just need to get you a kidney. Are you listed?
Me: Yes. But they say the wait time is 6-8 years for my blood type.
Dr.: Oh that's too long. You know why we're so short on kidneys?
Me: No. Why?
Dr.: Helmet laws. We had a lot more kidneys before helmet laws.
Me: My dad rides a Harley so I kind of like helmet laws.
Dr.: Hmm. There's always a trade-off.
I didn't know how to respond to there's always a trade off. I think I mumbled something and he sauntered off from my chair. And this is the third time he's lectured me about how awful it is that I'm epo resistant. It's not like it's something I can control. I get annoyed when I get lectured about high phosphorus foods and that's at least something I can control. My body's refusal to respond to epo unless I get 3 times the recommended dose is not a choice. And yet every week I get a lecture on all the bad things that can happen from too much epo. And when I ask what's the alternative, I'm told there isn't really one unless I want to be very anemic or get a blood transfusion once a month. Frustrated!
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I'm going to have to stay away from this thread because these stories horrify me.
I've been told I look really good for someone with crap kidneys, so I choose to take that as a compliment. As a matter of fact, when I went through security at O'Hare last week on my way to the meetup in Vegas, the TSA agent made me go through the imaging machine, and when I was done, I just stood there, grinning stupidly, because I didn't know what to do next. The TSA agent stood there, also grinning stupidly, and he blurted, "You sure look bright and healthy." I laughed out loud and said, "I have to tell you...I'm on the kidney transplant list, so I can't look all that great!" He didn't know what to say to THAT, so he just repeated himself, and I said, "It's amazing what a little makeup can do for ya!"
I used to think that it was pretty silly to refuse to wear a motorcycle helmet, but now I think, "ORGAN DONOR!" There's no helmet law here in my state, so people are free to risk brain trauma if they'd like. Good ol' American Freedom! :P
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"Well, when you stop urinating, your looks will go to hell. Just you wait and see, honey."
Oh, crap, I must look like a hag, then. Why didn't Andy tell me?
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I was told, "If you get a kidney, will those horrible bumps on your arm go away" :puke;
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Stupid thing said by my NEPHROLOGIST yesterday.
Dr.: I'm really concerned by how much EPO we have to give you. But the alternative is more blood transfusions and that's not good either.
Me: I don't know what the answer is.
Dr.: Me either. I guess we just need to get you a kidney. Are you listed?
Me: Yes. But they say the wait time is 6-8 years for my blood type.
Dr.: Oh that's too long. You know why we're so short on kidneys?
Me: No. Why?
Dr.: Helmet laws. We had a lot more kidneys before helmet laws.
Me: My dad rides a Harley so I kind of like helmet laws.
Dr.: Hmm. There's always a trade-off.
I am sorry....I can't help it, that was funny to me. ;D I tend to have a weird sense of humor.
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Stupid thing said by my NEPHROLOGIST yesterday.
I am sorry....I can't help it, that was funny to me. ;D I tend to have a weird sense of humor.
Don't worry, my mom and I laughed about it afterwards too. We also have twisted senses of humor.
EDITED - Quote Error Corrected - Bajanne, Moderator
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I was told, "If you get a kidney, will those horrible bumps on your arm go away" :puke;
How little some people know... *sigh*
When I got my first fistula in 1991, a friend of my dad's showed me his. He had been transplanted in 1979, and he still had the large lump on his arm.
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I was told, "If you get a kidney, will those horrible bumps on your arm go away" :puke;
How little some people know... *sigh*
When I got my first fistula in 1991, a friend of my dad's showed me his. He had been transplanted in 1979, and he still had the large lump on his arm.
I guess we shouldn't even try if "those ugly bumps" aren't going to go away! :rofl;
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I can always tell who is on dialysis from the "ugly bumps". I usually approach people when I see their arms and start up a conversation. ;D I ran into this one guy who was still on hemo and he was so amazed that I didn't have any indication of dialysis on my arms. I told him about me having been on PD for years and he had no idea what that was. It's weird to me that none of his doctors told him about other dialysis options.
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i knew nothing about other types of dialysis for 2 year after being on in center hemo... after constantly having child care issues, among other issues, never once was other options mentioned.
It wasnt until i quit d for 2 weeks, and wound up in another hospital, meeting people from another clinic and starting at that new clinic that i was told about it.
btw, i was told that, even though its considered cosmetic and probably not covered by insurance, that "can" remove the fistula/graft if u get a tx and had it a while with no problems. they dont like to, but can.
not sure how true that is.
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The latest bit of idiocy from someone who is supposed to be medically trained:
My transplant doc asked if I had noticed any fluid retention.
I said no.
Then he asked if I was urinating as much as I was drinking.
Ummm...isn't that what we just covered? And if I'm not retaining fluid, how would I know? I do keep a rough tally of how much fluid I drink, to make sure I get at least 2 L a day, but I'm not measuring output down to the last drop to find out if it's all coming out. :urcrazy;
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I got a good one...
just the other day when I went for the image of my kidneys (the last test needed in order for me to go on the transplant list) the tech that did my test says,
"Why are you having your kidenys x-rayed?"
Me, "I am on dialysis and in order for me to get on the transplant list I need to have this done."
Tech, "You are on dialysis?"
Me, "Yes"
Tech, "Are you on dialysis because both of your kidneys don't work or just one?"
Me, "really? are you serious right now?"
:urcrazy;
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...here's your sign...
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Sometimes I think everyone in a medical field should be required to take a refresher course of high school biology every five years. :banghead;
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i knew nothing about other types of dialysis for 2 year after being on in center hemo... after constantly having child care issues, among other issues, never once was other options mentioned.
It wasnt until i quit d for 2 weeks, and wound up in another hospital, meeting people from another clinic and starting at that new clinic that i was told about it.
btw, i was told that, even though its considered cosmetic and probably not covered by insurance, that "can" remove the fistula/graft if u get a tx and had it a while with no problems. they dont like to, but can.
not sure how true that is.
It's true. I had my first fistula removed when I was 15. I had a transplant that was working great and didn't need it. I think they were worried about me injuring it, since I was so young. The problem with that is, if you ever need to go on dialysis again, you need to have another fistula placed
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I got a good one...
just the other day when I went for the image of my kidneys (the last test needed in order for me to go on the transplant list) the tech that did my test says,
"Why are you having your kidenys x-rayed?"
Me, "I am on dialysis and in order for me to get on the transplant list I need to have this done."
Tech, "You are on dialysis?"
Me, "Yes"
Tech, "Are you on dialysis because both of your kidneys don't work or just one?"
Me, "really? are you serious right now?"
:urcrazy;
I've gotten that question before too
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LOL@ tbarrett and Riki. That's unbelievable!
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I still remember having an ultrasound done three years ago, checking for gallstones, and the radiologist had a student with her. I think that since I was an odd case, she decided to use me as a teaching tool. She showed the student my pd catheter, and for some reason, she decided to look at my native kidneys. She was running the probe over my back, clicking buttons and making strange, concerned sounds. Finally, I said to her, "if you're looking for function, you're not going to find any there."
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
Oooh, you're so much better than me! I'd have asked at what age they planned to walk off into a snow storm like an elderly Eskimo, to save their family the hassle of caring for them. Especially since it seems they've already gone senile... ::)
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I think I might have done a jbeany. As I get older, I get more ornery. In fact, I got into a political argument with some duffer at the airport last week. I can't believe someone AT CHURCH said this. I hope God was listening.
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I am just wondering who this person was talking about?? and talking to???
and let me just tell you that if this person had said this intending it for me.... well church or not they would have had to call the police to get me off of ths SOB!!!
>:( :Kit n Stik;
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I get nervous for the future when people say things like this....how much more of a leap is it for them to think it is okay to kill off people not deemed healthy, mentally, or physically "normal" enough?? These are the same people who probably don't believe in a national healthcare system and bitch about welfare, but then when a "disabled" person walks into their company for a job, they won't hire them!!! We can't win with a**holes like this around!!!
Sorry for this person's unkindness towards you..."forgive them for they do not know what they do"...I suppose....
xo,
R
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I remember once telling someone (years ago) about my kidney transplant and how my mother donated one of her kidneys to me. This person said something about how they wouldn't put their mother thru that mainly because if your kidneys fail then thats just Gods way of saying it's your time to die. I was stunned and could only manage to look at them like they were crazy. At the time I was sure I hadn't herd them correctly.
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I remember once telling someone (years ago) about my kidney transplant and how my mother donated one of her kidneys to me. This person said something about how they wouldn't put their mother thru that mainly because if your kidneys fail then thats just Gods way of saying it's your time to die. I was stunned and could only manage to look at them like they were crazy. At the time I was sure I hadn't herd them correctly.
I would think that it would be worse for your mother to go through your death than the donation process
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Yesterday at Church I had someone say this behind my back. (literally, they were standing behind me)"I don't understand how some people have the nerve to run up a bunch of bills and burden their family when they're probably just going to die anyway."I was so mad but I didn't want to make a scene so I just walked out.
I remember once telling someone (years ago) about my kidney transplant and how my mother donated one of her kidneys to me. This person said something about how they wouldn't put their mother thru that mainly because if your kidneys fail then thats just Gods way of saying it's your time to die. I was stunned and could only manage to look at them like they were crazy. At the time I was sure I hadn't herd them correctly.
That would have pissed me off beyond words. So, I guess this person would refuse all medical intervention for any situation?
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I guess Subeat. :waiting; Maybe the human race got lucky and she lived thru a firey car crash. Ooops, did I say that out loud? ;D
Riki - yeah, :) I told my mom she didn't have to do this...she said This is no different than if you had the flu and I had to sit up with you all night taking care of you.
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What a great Mom! My Mom volunteered but I said no, because of her age. To listen to my Mom, "I'm only 83." That's my Mom, gotta love her!
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My mom wants to go in as a paired donor for me. She's currently trying to lose the weight they they've told her to lose, before she goes for any testing. I'm almost hoping that I get a kidney by other means before she gets to that point. I'm afraid of something happening to her while giving a kidney for me, and we really only have each other
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this really has nothing to do with dialysis, but it was said to me...
i am trrying my hardest to find the perfect costume for my son, i didnt want to buy a cheaply made cookie cutter costume for him. I just got out of the hospital, i feel like shit, and yet i dont see healthy parents doing half of anything for their kids, so this really hurt me.
not only did someone let my son have the UNFINISHED sheild and sword to play with, and also CHANGED it by adding more tape (this was UNFINISHED so of course it was flimsy) but then procedded to tell me in certain words what a peice of shit it was compared to the type of things "our" parents used to make us as costumes...
why do i even try?
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Oh Jen, I'm sorry to hear that! Forget those people; did your son like the sword & shield? As long as he is happy, who cares what anyone else thinks. Hang in there!
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Oh Jen, I'm sorry to hear that! Forget those people; did your son like the sword & shield? As long as he is happy, who cares what anyone else thinks. Hang in there!
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well they werent finished, so i wouldnt let him play with them, he got ahold of them while i was napping. He likes the idea, but since they werent done they were still really flimsy and basically unusable...
grrrr i think im a bit hormonal from everything, ive never been THIS emo over such petty crap. just feeling down because i feel like crap.
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This is what I copied and pasted off of a friend's email to me today, she said:
"Hopefully, you'll get a transplant soon. I know this is probably a stupid thing to say, but try to stay positive. I know that's easier said than done"
I felt like posting this little icon in my email back to her: :Kit n Stik;
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Riki, when I met with my transplant team last year, I mentioned my eldest sister was willing to be tested as a donor but I was extremely uncomfortable with the idea. One of the team's doctor's said I was being selfish and not considering the benefits my sister would get as a donor. It really worried me for a while that maybe I was doing the wrong thing by saying no to my sister but I decided that I had to do what was best for me and my peace of mind. I should add my health was pretty good. I was worried something would happen to her and also that the strain of two daughters undergoing ops would be too much for our Mum. My sister soooo wanted to help out but I'm soooo glad it wasn't necessary. Hugs to you and your Mum.
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I remember having a long chat with the transplant coordinator when I was getting ready to go back on the list for the 3rd time, and she asked me about living donors. I told her that I didn't really want a living donor, because (and this was after losing 2 transplanted kidneys in less than 5 years) I didn't know how I could face the person who gave me their kidney if I were to lose it. She said that you have to think of it as your kidney and no longer theirs, but it's not exactly an easy thing. I don't know why anyone would say you were selfish for not wanting your sister's kidney. You do have to do what feels right to you, and for me, at that particular point in time, I didn't want a living donor. The thing with these decisions is that you can always change your mind later on, if situations change. For me, it did change, when I got the peritonitis infection. I was so sick, and I didn't want to go through anything like that again. I started asking my family at that point. That was 3 years ago, and only one person I asked actually answered me, and that was my brother. He said no.
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I turned down my sister's offer to be tested, too.
1. Adult diabetes runs in the family, putting her at risk in the future. 2. She has a young child who needed his mom a lot more than he needed his aunt. 3. I wanted a pancreas as well as a kidney. 4. I was doing okay with D, and didn't want to risk her health. 5. I needed her to be healthy to help me recover from a transplant. 6. It will be harder to get a match for the second transplant I'll likely need in the future, so she's my back up plan.
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At this point, I wouldn't turn down anyone's offer to be tested. I just haven't had anyone offer
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people just love sending me remedies.
The latest is some parsley tea!
Yes, why do I go to dialysis if a little bit of parsley tea will fix me right up....... :Kit n Stik;.
Why haven't my neph thought of it.... darnit :sarcasm;
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people just love sending me remedies.
The latest is some parsley tea!
Yes, why do I go to dialysis if a little bit of parsley tea will fix me right up....... :Kit n Stik;.
Why haven't my neph thought of it.... darnit :sarcasm;
Hey Des, I still have lots of parsley in my garden! If it works, I'll split the profits with you! :rofl;
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when i tell ppl im on dialysis, "oh but ur so young" yeah well kidney failure doesnt really care how old u are... and why rnt u on the list yet, or have they given u a beeper? oh and explaing peritoneal dialysis, ugh, so does the tube go to ur kidney... um no
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I don't mind answering questions about D or ESRD but some people (read Adults) can be so stupid! One woman asked if I still urinate. I told her yes, I do. Fine, but every time she saw me after that she would ask increasingly personal and embarrassing questions. I finally lost it with her and told her it was none of her business. I didn't even know this woman very well! I wonder if she would ask a cancer patient who was a stranger the same kind of questions.
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i hate explaining t when i go visit and stay the night, and as m setting it up im trying to explain the bodys part of it, and they are asking where does all the water go and why do u use sugasr water and a bunch of other crap, ive pretty good at explaining it where everyday idiots can understand tho
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I kid you not, I had someone ask me the other day if an animal's kidney would work, instead of waiting on the transplant list! Yeah... let me just head on over to the pet store and see who's a match?! Idiot!!!! :banghead;
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I'm having an ongoing issue with medical professionals confusing home hemo with PD. I've been in and out of the hospital all summer, and it seems that EVERY paramedic, EMT, nurse, etc. asks me when/where I do dialysis, and I say I do it at home six days/ week. They ALWAYS assume I'm on PD, and I have to explain again and again that I'm on HEMO dialysis. Yes, people, I have a dialysis machine in my living room! :Kit n Stik;
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when i tell ppl im on dialysis, "oh but ur so young" yeah well kidney failure doesnt really care how old u are... and why rnt u on the list yet, or have they given u a beeper? oh and explaing peritoneal dialysis, ugh, so does the tube go to ur kidney... um no
I've gotten the "but you're so young" before. When I hear it now, I say "yep, but I started when I was 12, so this is nothing"
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After waking in recovery after I had my small hernia repair earlier this year, a nurse came along to check my surgery site. On doing so, she looked rather perplexed and told me I had a large drain tube in. My heart rate went immediately to overdrive - and then I asked " That wouldn't be my PD catheter you're looking at, by any chance?' And it was. ???? How could the nurse not have known? I'll never forget the terror at thinking the surgery had gone wrong - even for only a few seconds. ::)
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yes, nurses in the hospitals seem oblivious to pd... when i was in there, NONE of the nurses knew how to hook it up or anything! (ended up with para...er... cant spell infection)
Heres a good one... my step mother calling me a hypochondriac!
um yes... see these "track marks"? ya i do this for FUN :Kit n Stik;
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When I was on PD, every time I was in the hospital, I had to explain to nurses and students and sometimes even ER doctors how PD works. Even now when I mention I was on PD, I sometimes have to explain it.
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yeah, the hospital i go to, i used to work there, so when i go in i tell them whats wrong with... i rememebr one time i went in with peritonitis, told them this, and they said it could be apendicitis, or i was pregnant, that patients that self diagnose were almost always wrong... no i have peritonitis, draw the fluid out, see that its cloudy, and send it up to the lab to see what it is and then send me a dialysis nurse bc u guys are useless...
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When I had peritonitis, I was told it was gallstones. I knew different. I told them so. It wasn't until after a few days, when I'd had the ultrasound to check for gallstones and there was no issue, that they started to believe me. The problem with checking the dialysis fluid with me was, I didn't have any cloudy bags. They were clear.
For the doctors who say that patients who self diagnose are always wrong, I don't think they realize that dialysis patients know their bodies well. They learn the signs, and know when something isn't right. There are very few times that I've gone into the ER with an issue and been wrong about what it was
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For the doctors who say that patients who self diagnose are always wrong, I don't think they realize that dialysis patients know their bodies well. They learn the signs, and know when something isn't right. There are very few times that I've gone into the ER with an issue and been wrong about what it was
I agree with you!
when i tell ppl im on dialysis, "oh but ur so young" yeah well kidney failure doesnt really care how old u are... and why rnt u on the list yet, or have they given u a beeper? oh and explaing peritoneal dialysis, ugh, so does the tube go to ur kidney... um no
I've gotten the "but you're so young" before. When I hear it now, I say "yep, but I started when I was 12, so this is nothing"
yeah when folks say/said this to me I like to follow it up with..."yeah you don't have to be born with kidney disease to wind up on dialysis. I have met people who have had diabetes, elevated BP, and even strep throat end up on the machine...it would be wise to find a cure for this thing. Anyone can end up with this disease!!
PS-IGNORANT THING ALERT....My former pediatric neph saw me in the dialysis unit helping the kids on dialysis "hey you want us to hook you up for old time sake?" Freaking hilarious...ass hat!
xo,
R
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PS-IGNORANT THING ALERT....My former pediatric neph saw me in the dialysis unit helping the kids on dialysis "hey you want us to hook you up for old time sake?" Freaking hilarious...ass hat!
xo,
R
I imagine that he was probably joking. My pediatric nephrologist would probably say something like that to me, too, if I saw him. They don't dialyze kids here, so he has no need to be here.
I think it funny, my pediatric nephrologist is the best in his field in North America, and I teased him solidly the whole time I was his patient.
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I frequently use the term "Ass Bag" :rofl;, But I love your saying "ass hat", thanks for the laugh, I needed one
Iwannabean
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Does anyone ever get asked, "Which kidney did they transplant?" I've been asked that multiple times by medical professionals!! then there's always an awkward pause as I look at them bewildered, to which they repeat the same question! as if I misunderstood them the first time! ::)
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Does anyone ever get asked, "Which kidney did they transplant?" I've been asked that multiple times by medical professionals!! then there's always an awkward pause as I look at them bewildered, to which they repeat the same question! as if I misunderstood them the first time! ::)
I haven't heard that one yet! I suppose if you had a live donor, you could answer left or right. (From what I've read, left is most common.) For a cadaver donor, I think I'd answer, "I don't know; my donor was dead when she gave it to me, so I didn't get a chance to ask."
Sarcasm is the best defense against stupidity.
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I can't tell you how many times I've been asked which kidney of mine failed. Um, BOTH of them!!! I then have to explain that if only ONE failed, I would be okay, because look at all the people out there who are living healthy lives with ONE kidney. Like, for example, all the LIVE donors out there!!! Especially the one who donated to me!!! ::)
KarenInWA
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I frequently use the term "Ass Bag" :rofl;, But I love your saying "ass hat", thanks for the laugh, I needed one
Iwannabean
No problem glad to make you chuckle!! :2thumbsup;
PS-IGNORANT THING ALERT....My former pediatric neph saw me in the dialysis unit helping the kids on dialysis "hey you want us to hook you up for old time sake?" Freaking hilarious...ass hat!
xo,
R
I imagine that he was probably joking. My pediatric nephrologist would probably say something like that to me, too, if I saw him. They don't dialyze kids here, so he has no need to be here.
yeah he might of been joking but I don't think it was funny at all....the only time he talks is when he has something smart to say....I get very sick of people who are like that....
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My transplant was from a deceased donor and I know that I have the left kidney. The surgeon told me they usually place a donor left kidney on the right side and the donor right kidney on the left side but because of my enlarged native kidneys (thanks to PKD) I have a donor left kidney on the left side. I was somewhat stunned by this info. Huh? Did I need to know all of that as it raises more questions than it answers. However, it did tell me ''which kidney".
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Every nurse and tech that's asked me about whether I'm on the transplant list has told me, "Oh, good. You're young, they'll give you priority for a kidney. I hope you get the call soon." As far as I know, that's not how it works. Being young isn't going to get me a kidney anytime soon, with the wait times being 10 years and 6 years in my two list areas, and I'm relatively new to both lists. I've given up on trying to tell them that. Now I just make a dismissive chuckle and say, "Yeahhh..." ::)
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When I was on PD , I used to get p***** off when, after explaining about it to someone they would then say, "so how long can you do this before you do real dialysis?"
The real gem, remembering that at the time I was. 26 yearold woman wanting to start a family, and having received my diagnosis, not knowing if this was going to be an option, my husband's grandmother said " well, have a baby and you will be OK". Stupid old biddy, she was as dim as anything but I could never bring myself to forgive her for that.
The standard annoying comment is 'you look well' or even worse, being completely ignored by a person who stood and talked to my mum while I was there. Previously she had always spoken to me. Another woman, to my mum as I am standing there 'she looks well doesn't she' . I suspect that I had a small taste of what someone in a wheelchair must experience when people talk over them and not to them.
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Not sure how I was to react to this one. I was at in center and I am one of the 2 self care patients. They sat me in a different area then usual so I didn't recognize the people. I was setting up my needles and tapes and getting the machine ready, and myself ready to needle. when the guy next to me asks if I'm a nurse. I said no but I'm self care. HE said oh but that's the nurse job why would you want to take their job away from them.
Really really..
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Not sure how I was to react to this one. I was at in center and I am one of the 2 self care patients. They sat me in a different area then usual so I didn't recognize the people. I was setting up my needles and tapes and getting the machine ready, and myself ready to needle. when the guy next to me asks if I'm a nurse. I said no but I'm self care. HE said oh but that's the nurse job why would you want to take their job away from them.
Really really..
Apparently that guy doesn't realize that the nurse gets paid the same whether she (or he) does 5 patients or 3 patients that shift. Really, the more patients who are self-care, the easier the nurse's job is. Wow...
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Isn't it sad that this thread started in 2005 by LifeOnHold (who has since passed on) is still so alive and active? Why is that? The ignorance that we have to face (even from the medical people) is astounding!! It seems this thread will last as long as we have an IHD! They keep the ignorance coming!
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Isn't it sad that this thread started in 2005 by LifeOnHold (who has since passed on) is still so alive and active? Why is that? The ignorance that we have to face (even from the medical people) is astounding!! It seems this thread will last as long as we have an IHD! They keep the ignorance coming!
That is so sad but true.
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the sad part is that ppl will continue to say ignorant and stupid things... and be clueless about dialysis even though its been around for how long now
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heck, its like that for many diseases and disorders... look at mental illness, or even aids... stupid people will always be around. its sad.
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The old saying 'ignorance is bliss' is so true. (I wish I was ignorant about some diseases and treatments that I know too much about.)
How lucky some people are to be healthy and ignorant.
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One of my biggest regrets is that when I was healthy and ignorant, I didn't fully appreciate it.
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stop regretting, just a waist of time. Just be happy you've once had a timet that you were healty and could be ignorant. So many people didn't even have that.
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I had a liver transplant on 3/22/2005 and when people would ask me about it you would be amazed at how many of them said to me "how long were you on dialysis before you got your liver?" :o
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I gotta say that before I found out i had CKD I had no clue about it. I didn't know what dialysis was, not even a hint. :shy;
Soooooo I just let it slide when people say ignorant things about it. But thanks to you all now I have some good comebacks to say if it should arise :rofl;
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heh so this weekend i hung out with a friend, who had fixed me a rather large mountain dew, i did drink all of it. then she said want some more, I said no thanks im on that silly fluid restriction. to which she said, "Oh yeah! Do you want some water?" ???
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heh so this weekend i hung out with a friend, who had fixed me a rather large mountain dew, i did drink all of it. then she said want some more, I said no thanks im on that silly fluid restriction. to which she said, "Oh yeah! Do you want some water?" ???
:rofl; :rofl; Because Mountain Dew isn't fluid!!
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Goth that's too funny :rofl; :rofl;
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My husband's brother had a mild heart attack last week...no worries, he is fine and discharged now. But when he was first admitted, there was some concern about his kidney function. He told my husband that he probably wouldn't be discharged until he got a kidney transplant. Now, he knows all about my kidney problems...did he honestly think it was that easy to get a kidney?
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Subeat - Wouldn't that be nice....a kidney transplant on order whenever you needed it. I'll take two please! ;D
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Subeat - Wouldn't that be nice....a kidney transplant on order whenever you needed it. I'll take two please!
Well, they obviously are if you watch House. :bow;
EDITED: Quote error corrected - Bajanne, Moderator
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I wont be greedy, one will do. Thank you. Will it come by post or Currier.
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As long as it doesn't come C.O.D.! :rofl;
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I heard a good one today. Blue Cross/Blue Shield of Tennessee sent me a new information package with a listing of 24 hour info tapes you can listen to. Out of curiosity, I listened to the one regarding dialysis. They mentioned pd and hemo. Then went on to state "Neither one is painful". Really?! Just how long has the person that wrote this been on D?! Lol!
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More to the point, have they actually EVEN done dialysis?
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Ha!
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I had someone ask me if my liver had failed after I previous told them it was my kidneys. Lol. Shows they care I guess. HAHA
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Isn't it sad that this thread started in 2005 by LifeOnHold (who has since passed on) is still so alive and active? Why is that? The ignorance that we have to face (even from the medical people) is astounding!! It seems this thread will last as long as we have an IHD! They keep the ignorance coming!
I restarted it with another thread called "whats the dumbest thing someone has said to you" and got an email from the narrator asking if they could "combined" the two threads (mine and this one) so I said GO ahead!! :2thumbsup;
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This is a little off topic but in some way it runs along the same lines... it's just been bothering me and wanted to get some feedback.
My boyfriend has been the sweetest, kindest and understanding person in the 4 years we've been together. His family has been so...how should I put this? Insensitive...not there.... clueless on how they affect his life (if any and at all...just a glimpse... we had a son together a year ago... his mother has seen her grandchild once... his brother and sister...never call and when they do they need money, or something...anyway) His father passed away 2 years ago, and it's affected him and his brother a lot, since they were actually very close... however, today...this I feel is true ignorance....
My boyfriend texted his brother to wish him happy birthday. His brother response was "Let me ask you a question, is it wrong that all I wanted was for Dad to call and wish me a happy birthday, even though he's not here anymore?" My boyfriend responded " No, sometimes I wish he would call too, or that I could pick up the phone and call him anytime I wanted. I just wanted to text you and let you know I was thinking about you on your birthday". His brother's response?? "Yeah, well you're not the call I was waiting for..."
To top it all off... we were going finally go see his sister a few weeks ago, and I had become seriously sick with the flu, so we couldn't make it... now she's not talking to my boyfriend because she feels "I did it on purpose... oh, and I use my ESRD as an excuse!" WHAT!??? Not once have you visited us!!!
My boyfriend was in tears, and I couldn't even comfort him because he was so angry and upset. I haven't had anyone be directly ignorant to me lately about D, or ESRD, but this threw me for a loop! Oh my goodness I want to call his brother and sister and smack them through the phone.... is that possible?! :Kit n Stik;
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I believe they're working on an I-Phone app that will do that. :bandance; :rofl;
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I believe they're working on an I-Phone app that will do that. :bandance; :rofl;
Good lord! The developer who can come up with that will be a multi-gajillionaire! :2thumbsup;
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Ive had people tell me, Hell I have even had a few people in my family say the same thing. that i use my dialysis as an excuse, that im a hypochondriac..etc... People think because we dont look sick we arent.
Im about to say something semi mean so i want to first say that i would never ever wish this crap on anyone, ever. That being said..
My boyfriends ex gf wont leave him alone, and has tried to get under my skin a few times, saying some very mean things about me, and to me. mostly stupid things (she is young and dumb!) But she said she hopes i never get a kidney and die and hopes i get 'kidney raped' whatever that is... I was sooo frustrated for a split second i thought to myself, I really wish this brat could feel my pain for just one hour. Just one hour, thats all.
Is that mean? probably, but some people just dont get it. If they could walk a min in someone else shoes, maybe they would get off there high horse!
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what does your BF do when she says things like that? You don't really talk with people like that do you?
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They are just jelious that they are not as tough as we are. ;D
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I love the doc last week who walked into the room were I was waiting and announced" How is my only nocturnal patient doing?" Sigh. I am so special!
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everytime i see my doc hes like, ur my easiest patient, he never has anything to complain at me for and i have the fewest meds, and hes about to let me stop another one... i dnt even remmebr the last time i was only taking 4 different meds, :2thumbsup; :yahoo; :cheer:
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Every time either DH or I see my neph, he alwayys remarks how strong I am because I do home hemo. One day he even called me "pathologically nice". WTF? He never saw me ream out my in-center staff for their colossal screw-ups or misinformation. :Kit n Stik;
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Extended relatives who only see you at funerals (I've been to two in the last year) and all they say is, "WOW! You LOOK GREAT, I can't believe how GREAT you look" when I know damn well they are expecting to see a SICK person talking to them. ONE person in my family made me out to be a really, really sick looking person and because of my Mother in laws spreading around that I'm SO sick, family relatives expect the worst. So what, I have kidneys that aren't working right, doesn't mean I'm "Sick" ::) :boxing;
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Ok, I read this entire thread and replied about six times...in a row. Here is my attempt to condense it into one post. Sorry if it's a mess, and if my stupid touchpad autocorrect the quotes and stuff. Will try to clean this up, sorry to hog the page. Consider this my "highlights" reel of the last six years of ignorant things people say....
when i tell ppl im on dialysis, "oh but ur so young" yeah well kidney failure doesnt really care how old u are... and why rnt u on the list yet, or have they given u a beeper? oh and explaing peritoneal dialysis, ugh, so does the tube go to ur kidney... um no
I've gotten the "but you're so young" before. When I hear it now, I say "yep, but I started when I was 12, so this is nothing"
I usually get that at the hospital when I go over my meds list or history and say much the same thing "well I started out from day one all messed up, and that's what happens when you're born with a bunch of birth defects.". I'm always surprised at what medical personnel will say, they are always taken aback by me, have never heard of all my crap...
I got one for you all. How about the training people, docs and nurses who decide to come in and see YOU because you are the interesting patient today? I have had more damn trainees stop in to see me because I have a urostomy and have kidney failure than you could shake a stick at. Can I see? Is what they ask. Oh sure why the hell not, everyone and their damn brather has been in here already!
I know this is years old, but same with me! I have a bouari flap as a urinary diversion (a procedure usually used for ureteral reimplant) it looks like a mitrofanoff, and I'm always the interesting patient! Especially my case history, persistent cloaca is super rare....though multiple times doctors have written that I had bladder extrophy, which is much less interesting, and then I've had to go back and tell them that no, I did not have that, please take it off of my record. Gah!
Transplant coordinator for Wisconsin list conversation
Her: do you have any potential donors?
Me: No
Her: No family?
Me: No it's just me and my mom all my other family is distant cousins for the most part.
Her: Well, how about your mom?
Me: She's over 60, has diabetes and high blood pressure. Has a few things against her. :sarcasm;
Her: Oh, well no friends or anyone that has ever offered you a kidney?
Me: Uh, no. My boyfriend offered but he apparently has some kidney thing that would deny him.
Her: Well, does your extended family know you need a kidney?
Me: yes.
Her: And no one has offered?
Me: No.
**you can here the awkward silence for a few seconds**
Her: Oh. Well, you're AB+, which means you can accept from anyone! With a live donor at your age, oh, that would just be so wonderful! Do you have a facebook account?
Me: ummm...yes?
Her: Put it on your facebook that you need a kidney! :banghead;
we were told to do that, too. And email. I did, and got tons of responses. I have three (maybe 4?) potential donors so far, the tubes come in the mail like Christmas presents. I am O+. I don't like talking about myself, it was embarrassing at first, but the mass facebook/email DID prevent a lot of dumb questions. I included URL's to for informative websites (including ihd), and can update my facebook status without a million Questions about what's going on with my kidney. I just have them refer to my "note" on facebook for more info.. You never know who wants to donate. I felt slimy appealing on my own behalf like that, but I'm 32 for goodness' sakes, I want to be around a while!
Sounds like an awkward conversation (that you posted about 3 years ago, sorry), but we must become opportunists at a time like this! I have had a mini-version, when my maternal grandmother asked about my father's family offering to donate. My mom's sisters have called the donor line, and one of my paternal aunts said she had AB+ (so ineligible), but my dad's family, though supportive and loving, is weird and doesn't like to talk about anything, not mentioned it at all, and I felt like I had to come up with an excuse for them. I know one aunt is AB+, though, and i'm O+.
I DID get mad when my uncle responded to my facebook plea by saying that a sibling or parents is the best match, and I interpreted it in a sing-songy, smart-aleck tone. What pissed me off was, mom can't donate, my brother is checking on it, and my uncle was at my dad's funeral (though he's my mom's brother), and knows he can't donate since he's dead and all. I had just explained that these people might not pan out, and re-explained (since he obviously didn't read my note) that the hospital suggested we just have everyone call in and they would decide who to test. Grr!
I have a story similar to this. When I first got sick, I was getting blood transfusions about once every six weeks. The hospital had a really hard time getting the IVs started, so every time my entire arm would be covered in bruises, usually on both arms. I taught in a school with some pretty rough characters. One day after class, a boy who was known to be the enforcer in the local gang stayed after class. He waited for every one to leave and said, "Hey Miss, I've noticed your arms the past couple of months. If there's a guy, I need to take care of..you just tell me where he is and he won't hurt you no more." I was speechless for a minute and then explained I wasn't being beaten at home. I was both appalled and flattered. :P
I would feel the same way. It was terribly sweet of him, in his own way.
Well, quite honestly, I get tired of the constant, "Oh, you're so young to have this happen to," comment. I'm so sick and tired of it. :Kit n Stik; ::) Renal failure can happen at any age!!
I know this has been said a crapload of times, but I agree. The reason it bothers me is that sometimes people seem to be accusing me of something, like they're suspicious of me (especially outside of my Neph or Uro clinic). For example, I had a strange attack (probably a gallbladder attack) years ago and went to the ER from work. The admitting nurse went over my meds with me and said something about all the medications, and why was I on so many? And then, "Why are you on Ritalin? I thought people outgrew ADHD.'' I explained that that was B---s---, and that I can't even diagnosed until I was 26, often people just develop coping mechanisms, etc. I used swear words because I felt terrible and couldn't believe that I had to explain this to a medical professional. I wanted to smack that idiot, but I was too weak and sick. BTW, this was way before I started on all the meds I have now--over twice as many! Ugh.
I had a friend come up to me today & say, "I looked up what a fistula is and it sounds worse than it is". Really?
Just a guess that this person still doesn't know the difference between a surgically produced fistula and one that occurs in the body on its own. And may the fool suffer an anal fistula just to demonstrate to difference!
have you ever looked at pictures of dialysis fistulas online? some of them are pretty gruesome. I have yet to see, with my own eyes, one that looks as nasty as some that I've seen online
that's actually good to hear, Riki, thanks. Maybe this person was just trying to be reassuring, though. Cause they sound frightening to me. Mine has been postponed twice and i was a little relieved.
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I got one today that just made my eyes pop out of my head....
I went to the dentist for a filling (my first one! Thanks dialysis! :banghead;) The hygienist was reviewing my chart before she was going to aide in the procedure with the dentist. She was asking me the normal amount of questions when she said:
"Dialysis? What's that for again?"
"Kidney failure"
"Oh, yeah, I always confuse that with hemodialysis"
I then explained to her exactly what error she had just made and prayed that she knew enough about dental procedures to not screw anything up in my mouth. (Luckily everything went fine) :banghead;
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Okay, a little backstory first...
I have long hair, tend to be somewhat unshaven, and have a pretty beat-up looking car (runs fantastic, but after being hit 10 times in the six years I've had it, it's not pretty cosmetically). For years now, every few months I would get pulled over for my broken taillight. It worked, but the casing was broken. First I was told it had to be covered, so I covered it in red tape. Then I would get pulled over if even the slightest bit of white light was showing through. Then I would get pulled over when the red on the tape started to lose its color. Then I was told that since the light couldn't be seen shining through in the daylight, I had to use some red film to cover it. Did that. Of course, every time I got pulled over I'd get treated like I was a fugitive from justice even though my record is spotless (not even a traffic ticked since 1995!).
Well, recently I got the taillight fixed (even though it cost more than the car is worth), mostly because I was tired of it giving the police an excuse to profile me and pull me over...and not a week later, I get pulled over for a crack in my windshield that had been there (not obstructing my view in any way...it was on the passenger side) for years and NONE of the other cops that had ever pulled me over had said anything about it.
(Side note: The officer that pulled me over had been next to me at a stop light just prior, and had allowed two cars coming the other way to run a red light while turning left. I mean, our light had been green for a couple seconds by the time the second car even entered the intersection. When I questioned him on it, he merely said, "I hadn't noticed".)
Anyway, I hand him my license and insurance, and place my arm on my door. He glanced at my fistula (been using it for 11 1/2 years so it has a ton of track marks), and after explaining the "reason" he pulled me over, he then asked, "When was the last time I 'shot up'?"
What an insensitive, accusatory question! After (admittedly obviously angry) explaining what the fistula was for, he went back and took over 20 minutes to write up a very sparse warning for my windshield. Boy, do you possibly think he was looking for any warrants or anything against me as hard as he could? When he came back I angrily told him how I feel how I had been profiled over the past several years and was tired of it, how he had let the two cars run a red light just moments before, and how he himself had stopped way past the line at that same red light. I'm totally surprised he didn't arrest me, but since I knew that since I knew I was in the right, I was willing to take a stand.
The whole point of the story is his asinine question about me shooting up. I've had the "oh, he must be an IV drug user" glance tons of times, and it doesn't bother me (though I have thought about having a "I AM NOT A DRUG USER" t-shirt made), and even some people have asked, "what happened to your arm?" many times, but not once has anyone, let alone a public servant, actually assume I shot up drugs!
(Oh, got the windshield fixed on Thursday...wonder what "reason" they'll find to pull me over now?)
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How about, "I'm so glad you got a transplant. How long will that last?" Umm... well.... I wish I knew!
:flower; :flower; :flower;
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And cutting her head off would be an even QUICKER way for her to lose 12 pounds! >:D
[/quote]
Love it!
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Jason, You need to easy on the police officers. I worked in law enforcement for 10yrs. They see something like that and its the first thing that comes to their mind. Just be nice and explain it but be RESPECTFUL and I am sure they will give you respect back. I'm sure they don't see many fistulas. Just a little advice from someone who has been there.
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Jason, You need to easy on the police officers. I worked in law enforcement for 10yrs. They see something like that and its the first thing that comes to their mind. Just be nice and explain it but be RESPECTFUL and I am sure they will give you respect back. I'm sure they don't see many fistulas. Just a little advice from someone who has been there.
I disagree.
Just because he is in law enforcement does not excuse him assuming the worst of me, even despite my appearance. Do you honestly think that if I had been in a nice vehicle, in a polo shirt, and groomed to the hilt he would have asked me the same question? Or even pulled me over in the first place?
If he had asked me, "What happened to your arm?" or even, "How did you get those needle tracks?" I probably wouldn't have lost it on him.
Being a public servant should mean he should be more intelligent in the questions he asks, not less. In this instance (I can understand how sometimes in emergency situations they have to make quick decisions) he should have understood before he accused. "Innocent until proven guilty", remember?
The sad part is that where I used to live, I have a couple friends on the police force. They have both told me that I am totally being profiled by the police here and it's something they do all the time. Sadly, they say there is practically no way to prove it as long as they have some valid reason (no matter how minor) to pull me over.
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My Mother-in-law, who I love and respect very much and she feels the same about me, was talking with my brother-in-law(her son) and the subject came up about my wife and I buying a new car. My brother-in-law asked if we could afford it (he knew of our financial difficulties the last couple years while I could not work). So my mother-in-law tells him that was approved for disability several months ago.
His response was, "Well, disable me." :Kit n Stik;
This happened last week. They were supposed to come over for dinner today. I cancelled.
I told my wife that if he said that in my house I would kick him out! She agreed.
BTW-He is a lazy, pot smoking idiot - if you couldn't tell.
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His response was, "Well, disable me." :Kit n Stik;
Oh, I hate those people! Really? You really think being sick is a good way to live?
I'd have asked which kidney did he want yanked out first... >:D
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Jason, You were not profiled. The police officer had probable cause to pull you over; a broken taillight. Any violation of the vehicle code gives them probable cause to pull you over. Maybe his questioning of you could have been a little less judgmental; but I doubt he saw your arm and thought "fistula". Anyways I hope you understand that 99.9% of officers are there to help and enforce the law.
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I have to say…I could never be a police office. I have zero patience to deal with people. Heck, I use to work retail and was ready to slam more than my share of the general public.
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You think that a police officer would have better things to do than pull someone over for a cracked windshield when people are running red lights. If a police officer asked me how long it was since I shot up, I would be pretty p***** off too.
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Last Friday I was talking to a nurse about being a dialysis/transplant patient. He was very interested and kind, and as we ended the conversation he said, "Well hopefully that will be able to grow one out of your own cells someday." When the stupid case manager and dietician chimed in and said, "uummm I don't know...that is stepping on God's turf. I don't know if they will be able to do that since it was created by God. etc..."
I wanted to go off and say, "Well when you are on the other side of the needle give me a call!" The only thing I did say was, "Well it can't be to far off...they did clone that sheep a decade ago!"
People are ass hats!
xo,
R
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I say...it's a good thing God is giving us the knowledge to make such amazing medical advances. ;D
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Jason, You were not profiled. The police officer had probable cause to pull you over; a broken taillight. Any violation of the vehicle code gives them probable cause to pull you over. Maybe his questioning of you could have been a little less judgmental; but I doubt he saw your arm and thought "fistula". Anyways I hope you understand that 99.9% of officers are there to help and enforce the law.
WRONG!
My father was a police officer. I have known well over a hundred police officers. One of my fraternity brothers said it best. He asked me if I knew why he became a police officer. I said that I did not. He told me it was because he loved to bust balls. That is a quote. My father once told me that the younger the police officer the bigger the prick. That is a quote as well.
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Jason, You were not profiled. The police officer had probable cause to pull you over; a broken taillight. Any violation of the vehicle code gives them probable cause to pull you over.
I've never disputed that he (and the other half-dozen officers over the past several years) did not have reasonable cause (albeit extremely minor ones) to pull me over. The part where you can tell it becomes profiling is that every day I see the police pass right by moms in minivans with broken lights, older folk with cracked windshields way worse than mine, people in nicer cars run red lights right in front of them (which, if you remember, happened right in front of him moments before he pulled me over!). This NEVER happened to me prior to me growing my hair out (which I initially grew out to give to Locks of Love) and became an irregular shaver.
No, they use the valid (yet minor) reasons that almost everyone else in the extremely conservative community (Oklahoma) in order to pull me over and try to get a "catch". You can't tell me that it takes 25 minutes (the length of time after I gave him my d/l and insurance that he was in his car) to write a warning that the only reason it had for pulling me over was the "other" box was checked and "ws" (I'm guessing meaning "windshield") was written in the blank space next to it. He was checking for warrants, probably having the insurance verified, and making sure my license was good (Oh, I forgot to mention, when I initially handed him my d/l and insurance, he asked me, "Is your driver license good?" What the--? I've probably had less violations on my license in my life than he has!
Whew...deep breath...
Maybe his questioning of you could have been a little less judgmental; but I doubt he saw your arm and thought "fistula".
Of course not. But neither should he have thought "IV drug user" and accuse me of that outright. He should have asked "How did you get those marks on your arm?" or somesuch less accusatory question.
Anyways I hope you understand that 99.9% of officers are there to help and enforce the law.
Of course! Despite these incidents, I am very pro-police. I just feel that everyone needs to be treated equally. If they are going to let the lady with the kids in the back seat get away with having a cracked windshield, then they should give me the same consideration. If they are going to pull me over for extremely minor infractions, then I should see them pulling over the many, MANY vehicles in this area with similar violations and they should be asked such accusatory questions. I'm sure it'd fly over real well if they asked every heavy set woman they pull over when she is expecting to give birth.
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My sister texted me on my birthday. She's always called me on my birthday in the past and I suspect texting is a way of avoiding me because she first offered to be a donor, then didn't follow through with the transplant center's request that she lose 20 pounds.
Then she sent me a birthday card and signed it like this: "Happy birthday. I hope you have many more."
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My sister texted me on my birthday. She's always called me on my birthday in the past and I suspect texting is a way of avoiding me because she first offered to be a donor, then didn't follow through with the transplant center's request that she lose 20 pounds.
Then she sent me a birthday card and signed it like this: "Happy birthday. I hope you have many more."
That's the cowardly way out. Ooooh, this makes me really mad.
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Deanne - something like that happened to me. She wasn't my sister but I saw her at a family function after she offered to donate.
She told me the transplant center asked her to lose 20 pounds and she laughed and said "We both know that isn't gonna happen."
That was about three years ago....she is about 20 pounds heavier since she made that statement.
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What is wrong with people? They make these offers on such a whim!
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What is wrong with people? They make these offers on such a whim!
Yes, they do. Don't get me started, :banghead;
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Yes, they do. Don't get me started, :banghead;
You should start a new thread in "transplant discussion" where we could all come and post our stories about "offers" that didn't pan out for some ludicrous reason. (I want to make it clear, though, that I understand that many people make offers in good faith, only to find themselves unable to donate. I'm talking here about people who obviously didn't really mean what they said.)
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I've had people "quasi family" that offered to donate to me. Then they used it as an excuse to get money from other family. For example "Look how great I am for offering to donate, now can I borrow $5000?? ::) And yes they got the money…. Not from me of course.
In the end I had to rely on the incredible kindness of strangers to get my life back.
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Personally, I didn't get a lot of "I'm doing this to look good offers." Instead, I got sincere offers from friends who would have never have passed the medical tests - mostly the psychiatric ones. ;D
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i have never asked anybody, and now im getting people coming to me, saying they are willing tell them what they need to do. the first transplant center i worked with told my brother no bc of his asthsma, but when i talked to gainesvillle they said that wouldnt stop him, so i told my brother and asked him if he still wanted to, and yeah i find out monday wheather or not he can, if he cant i have a few others willing to be tested... my boss told me "u are not out of options if your brotherr doesnt work out, there are several ppl here that are willing to get tested" i beleive these are genuine offer bc these are ppl that dont play games. im still awed by it though
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My Mother-in-law, who I love and respect very much and she feels the same about me, was talking with my brother-in-law(her son) and the subject came up about my wife and I buying a new car. My brother-in-law asked if we could afford it (he knew of our financial difficulties the last couple years while I could not work). So my mother-in-law tells him that was approved for disability several months ago.
His response was, "Well, disable me." :Kit n Stik;
This happened last week. They were supposed to come over for dinner today. I cancelled.
I told my wife that if he said that in my house I would kick him out! She agreed.
BTW-He is a lazy, pot smoking idiot - if you couldn't tell.
This right here, sounds exactly like MY OWN BROTHER. He often tells me he WISHES he could trade places with me. "Dont have to work, can sit on my behind all day and play video games, ahhh how great would that be?"
I dont even argue with him about it, as it would be pointless.
This is the same brother who told me that he would drink as much pop as he wanted if he was thirsty, and have the 'damn charlie horses' at dialysis. After all, "They arent thaaat bad"
In his defense, I suppose things could be worse... I could be an asshole... hehe
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I think we should "disable" some of these geniuses by making them donate twice as much blood as is normally allowed, and then forcing them to do 10 hours of physical labor. Then give them 4 hours of sleep while they are strapped in a chair and tell them to get up and do their normal weekend chore routine the next day. I think that might be a good approximation of what a day after a crummy D sessions feels like, don't you? Add in a few meds that have muscle cramps as side effects, and it'd be perfect.
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i like this idea
"Experience The Big D"
we wont specify but send all those ignorant pppl who think we are faking and such
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:shy; When I first started in dialysis, one of my patients had a severe charlie horse. I tried to help her through the pain by making her laugh....Well...I've never been so stupid! She DIDN'T laugh...and I NEVER did that again. Definitely the dumbest thing I've ever done. But I did have good intentions.
I don't think people stop to think of how hard it is for someone on dialysis and what they're body goes through. Uninformed people can be so very insensitive.
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What is wrong with people? They make these offers on such a whim!
My sister did this to me recently as well. She was very interested in donating (or so she said) until I mentioned she would have to lose weight and now she has all kinds of excuses not to do it. Its hurtful but I'm trying to be understanding of her feelings too... she is scared of medical stuff, can't even stand walking into a hospital.
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I hate it when people assume that the leg cramps aren't that bad! My husband has always had trouble with leg cramps (especially at night). Before I was on D, I rarely had them. I tried to be patient with him, but not as much as I should have been! Since D, I have apologized to him so many times for not being as sympathetic as I should have!
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I had one guy try to tell me my kidney failure was my body resisting the [unhealthy] lifestyle I was imposing on it. He started telling me of this cleansing diet that would bring my body back in line and make me healthy again. Oh, and told me to drink a ton of water. A gallon or more daily. LMAO. Yeah, right.
I asked him if this "diet" really worked and brought dead kidneys back to life, why were there millions of people suffering from ESRD? Why hadn't they heard of this miracle cure?
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I had someone tell me once that drinking cranberry juice would help my kidneys. I asked them.."do you know what the word "failure" means?"
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Yeah . . . my husband said something about his diabetes and kidney failure to a "friend" of ours. "Friend" proceeded to blather about how another friend had had some electronic equipment stolen out of his van, and how this was much more important. He literally told my husband to "get over it." Needless to say, this person is no longer our "friend."
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really horrible that. I think its people don't want to hear about illness when its not on television?
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I had an xray tech tell me I did not look like a dialysis patient.
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Kitkatz, I get told that a lot and I see that as a positive thing.
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I always tell them it's because I'm not in uniform.
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I had an xray tech tell me I did not look like a dialysis patient.
I also hear that a lot - I offer to show them my catheter... :rofl;
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Last Friday I was talking to a nurse about being a dialysis/transplant patient. He was very interested and kind, and as we ended the conversation he said, "Well hopefully that will be able to grow one out of your own cells someday." When the stupid case manager and dietician chimed in and said, "uummm I don't know...that is stepping on God's turf. I don't know if they will be able to do that since it was created by God. etc..."
.......
People are ass hats!
xo,
R
lol, yes, yes they are. How is hooking people up to dialysis, or even just giving them antibiotics "stepping on God's turf?"
sheesh, nice case manager you've got there...
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I had a co-worker ask me " so how long do you have to do this for... a week or 2 weeks ?" DUH... the rest of my life you moron. It's NOT a cold that I will "get over soon".
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Today, I went for about a 2 mile walk with my son. I live off a busy street in Indianapolis. 3x I had young teenagers yell out their windows at me to lose some F-ing weight! It wouldn't have bothered me so much normally, but my confidence has been down lately. My doctor wants me to lose 30 lbs and I thought I was doing something good for myself? What A**HOLES. If those jerks only knew what I go through everyday... ugh I wanted to punch them in the face!
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I find the fastest way to shut up teenager boys being rude is to tell them that with that attitude, they're never gonna get laid. (Worked wonders with my mouthy nephew!)
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A guy that worked with my best friend had come over one night with a bunch of their co-workers and he was kind of hitting on me, then he spotted my arm and my alien eggs (what I call my fistula, haha) and asked me point blank "Whoa, do you shoot up?" after I had already explained to him that I didn't really drink and have never done drugs. Oh and he asked me if I was pregnant (I'm a bigger girl)...so sweet of him...and after his super polite comments he still asked me if I would go out with him. Whatever/
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Today, I went for about a 2 mile walk with my son. I live off a busy street in Indianapolis. 3x I had young teenagers yell out their windows at me to lose some F-ing weight! It wouldn't have bothered me so much normally, but my confidence has been down lately. My doctor wants me to lose 30 lbs and I thought I was doing something good for myself? What A**HOLES. If those jerks only knew what I go through everyday... ugh I wanted to punch them in the face!
Oh, Annie. Not fun to deal with obnoxious little cretins.
What I would do in Milwaukee might work in your area depending on laws and what sort of police force you have. If it happens again, write down the addresses and then call the non-emergency number for the police and say you have a nuisance complaint and want the house issued a ticket. In Milwaukee, because it is such a college town, not only do the police HAVE to give an expensive ticket to the property if it is requested for certain violations, but they are not allowed to disclose who called in the complaint. If the people at the house want to know, they must contest the ticket in court in front of a judge. The police do not need to witness the violation either.
In Milwaukee, you need an address in order to register such a complaint. When Gwyn and I lived closer to campus, we routinely phoned in noise complaints. Homeowners used to walk around at night collecting addresses. One night a drunken idiot shouted down to Gwyn "We're at [the exact address], a-hole!" Two women who were out on the balcony with the person clamped their hands over his mouth and dragged him inside. The police not only responded but when I said I did not think my husband should ever be talked to that way, the policeman said 'oh, I agree with you!' You don't always get such nice ones, but we lucked out that night. The drunk individual must have dug a bigger hole for himself, because the police followed up with us and said that they could not give us details, but there had been an arrest.
If you get a nice cop to help, and especially if this is a repeated problem, they will probably go to the house just to scare some sense into the boys. (I assume these were all boys?) I would not hesitate to pour on the drama, too. "I am a mom doing the best I can even though I've got a terminal illness, and my doctor told me that I need to get some exercise and lose weight in order to qualify for an organ transplant. Walking is all I can manage. I think I have the right to walk down the streets of America unmolested, don't you?"
When I was in school our gym teacher was one of these women who wanted to teach us girls to stand up for ourselves. Can't say I learned a lot athletically from her, but I do remember her telling us that she used to go jogging every day past a construction site and all the men would catcall and make fools of themselves. She called up the construction company and told them "I am in a sorority at the local university. If this doesn't stop, I will have 300 women picketing your site tomorrow morning." The next day she jogged by and was met with complete silence. (And the sorority story was all a superb bluff.)
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Thanks guys. Cariad- I would love to report them... unfortunately they were in cars... would it work for the license plates? Next time, I'll be sure to bring a pad and paper with me. People can be so mean.
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Aaaaah, cars! Of course. The true coward's way.
In that case, I think you just have to accept that it happens to all of us. Gwyn and I were walking in Ann Arbor once and someone threw a lit cigarette at Gwyn and it left a mark on his very expensive suede coat. I have to think these people have miserable lives if this is what passes for fun. Don't let them intimidate you out of enjoying whatever exercise you choose. :grouphug;
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wow...I read through this page of replies...man oh man....teenagers yelling at people to lose weight, asshole dates, & people who are just generally uninformed about what dialysis entails.... :urcrazy;
hang in there peeps....
xo,
R
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You know, I can understand people being ignorant out of being uninformed. There is no real reason for the average person to know anything about dialysis, so if someone wonders if it only takes about a month or so for dialysis to cure you, well, I take the opportunity to educate and inform. There's a lot of stuff that I don't know because I don't have to know it, but that doesn't make me stupid; it just makes me uninformed.
But being cruel is a whole 'nuther thing. I can't stand that. Bullying and just being generally unkind is the one thing that I just will not tolerate nor excuse. I do not understand the mindset of people who are randomly unkind.
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I had some guy make a comment to me about my weight in a Baskin Robbins Ice Cream Shop. I did not hear him, so asked him to repeat himself, and asked him again when I did not hear him. He said never mind. I guess repeating himself was embarrassing.
Besides what gives anyone a right to say anything to anyone about weight or appearance? They do not know anything about you or your life and challenges or victories. :grouphug;
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As you guys probably know I'm a big girl,and when I was pregnant I was eyeballing some sweet looking pastry in line st the grocery.when an old guy told me that I don't. Need those. I didn't want them but it kinds idled me but I smiled and said I know...
some people think the worst of big people. I prefer salads and veggies over all else,but to lookat me you wouldn't think so.
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I know this has been posted but I am soooooo tired of people telling me that I do not look sick. I had 2 more people tell me that in church today. I informed them that I have spent the last 2 weekends in the hospital as I ran a fever for 23 nights and had a temporary stroke. Response: Oh, well you look great!
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YI Guy, That is the worst! I hate it when people say I look great. I have conjestive heart failure, advanced liver disease (HEP C), and kidney failure. I have good days, but I have had a lot of really bad days. I struggle to keep as healthy as I can. One thing that helps is Quinogel, a bio-available form of Co!10, that's great for folks like me that are over 50. I also hit the treadmill about six days a week. But dialysis seems to suck the life right out of me sometimes. It's a constant battle to keep kicking.
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I dunno, I kinda feel the opposite. Every single medical provider I've seen has told me how good I look despite everything, and I am thankful for that. I may BE sick, but I don't want to LOOK sick, too. It makes me feel that my efforts to keep myself healthy are paying off.
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Moosemom what you said reminds me of a quote by Ricaldo Montelbond on, I believe, The Johnny Carson Show. He said "I would rather be sick than look sick", lol. And they say "vanity thy name is woman".
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And they say "vanity thy name is woman".
LOL! I'm old enough to know there's a difference between someone telling me I'm looking good despite having crap kidneys and someone telling me I'm good looking. Sooooo not the same thing. :rofl;
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It was Fernando Lamas not Ricardo M. My memory is shot but It did come to me finally.lol He died not too terrible long after saying it.
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It was Fernando Lamas not Ricardo M. My memory is shot but It did come to me finally.lol He died not too terrible long after saying it.
You know, I DO remember that! And Billy Crystal on Saturday Night Live used to do a parody of him...."You look maaaaahvahlus!"
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That's the one! We're showing our age now.
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That's the one! We're showing our age now.
Dunno about you, but I'm only 29. My grey hair isn't real. :P
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Oh, I had a classic one today. I went into a herbal shop to buy a vitamin and in talking about it, I mentioned that I was on dialysis. The woman then tells me that she is a nutritionist which always raises,a red flag because any nutritionist that I've ever come across has always made ludicrous comments about kidney failure and/or what I should eat (normally, the advice is for things that I shouldn't eat). Well, I wasn't disappointed because she then tells me that it's a shame I hadn't come to her shope earlier then maybe dialysis could have been prevented! Well, she is at least 23 years too late, and given my strong British accent, it may have been a rather long journey to have made 23 years ago to seek her advice!!!!
Inside I'm pretty p***** but I recognise that she is well intentioned, and as usual I feel obliged not to make the other person feel bad about the crap that they are spouting. So I mumble something about my condition being terminal and that nothing could have,prevented it anyway. I wish that I could just come straight out and tell people like this that they are just talking shite and afterwards I feel frustrated that,I didn't have the confidence to educate,them on their knowledge deficits!!!!!! Grrr! :shy; :shy; :bow; :bow; :bow; :Kit n Stik;
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I have scares now on both arms, left elbow for fistula and right forearm (from my wrist to elbow) for my heart surgery. I had someone ask were I got the cool tattoos, they look really cool. I took a moment to look at my arms and told him St. Lukes Hospital, but this idiot actually ask "you can get Tattoos at a Hospital."
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I have scares now on both arms, left elbow for fistula and right forearm (from my wrist to elbow) for my heart surgery. I had someone ask were I got the cool tattoos, they look really cool. I took a moment to look at my arms and told him St. Lukes Hospital, but this idiot actually ask "you can get Tattoos at a Hospital."
Now that's a full service medical center! Although, the new fashion for white ink tats on pale skin always look like scars to me.
Still, I do remember my elderly great-aunt having a fit when my mother let me get my ears pierced at the jewelry store, instead of going to the doctor. Apparently, they used to do that - must have been during a house call.
Oh, I had a classic one today. I went into a herbal shop to buy a vitamin and in talking about it, I mentioned that I was on dialysis. The woman then tells me that she is a nutritionist which always raises,a red flag because any nutritionist that I've ever come across has always made ludicrous comments about kidney failure and/or what I should eat (normally, the advice is for things that I shouldn't eat). Well, I wasn't disappointed because she then tells me that it's a shame I hadn't come to her shope earlier then maybe dialysis could have been prevented! Well, she is at least 23 years too late, and given my strong British accent, it may have been a rather long journey to have made 23 years ago to seek her advice!!!!
Inside I'm pretty p***** but I recognise that she is well intentioned, and as usual I feel obliged not to make the other person feel bad about the crap that they are spouting. So I mumble something about my condition being terminal and that nothing could have,prevented it anyway. I wish that I could just come straight out and tell people like this that they are just talking shite and afterwards I feel frustrated that,I didn't have the confidence to educate,them on their knowledge deficits!!!!!! Grrr! :shy; :shy; :bow; :bow; :bow; :Kit n Stik;
Well, if you had juvenile diabetes like me, I suppose a nutritionist could have prevented kidney failure. All she would have had to do is convince 13-year-old me not to eat any of the foods I liked back in the pre-pump, never adjust your insulin dose, what's a carb?, just don't eat any fruit, bread, or sugar ever days. Yeah, okay, never mind. It's not possible. ::)
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Still, I do remember my elderly great-aunt having a fit when my mother let me get my ears pierced at the jewelry store, instead of going to the doctor. Apparently, they used to do that - must have been during a house call.
I actually got my ears pierced at the drs office! They don't still do that?
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Still, I do remember my elderly great-aunt having a fit when my mother let me get my ears pierced at the jewelry store, instead of going to the doctor. Apparently, they used to do that - must have been during a house call.
I actually got my ears pierced at the drs office! They don't still do that?
Can you imagine how much they'd charge now!?! Pretty sure Blue Cross isn't gonna cover that....
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Very true! :rofl;
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technically piercings and stuff like that are considered a form of surgery... part of the reasons most states have laws that make places have liscense to do them.
Idk if anyone is familiar with scarification, or implants (not the breast kind lol) but they take skill. Not anyone can do them.
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Mmm, I pierced my own ears. It did make me feel a bit sick, but persisted, should I see myself from see myself now as a skilled person?
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It is funny to go to the start of this thread and read it. This thread has lasted 6.5 years! LifeonHold is now gone but she was hilarious!
I miss her (Darlene). :(
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Planning a trip next summer and a friend asks, "But wont you be back on dialysis by then?" :stressed; I sure hope not.
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Planning a trip next summer and a friend asks, "But wont you be back on dialysis by then?"
Yikes. That'll bring the grey hairs out....
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Planning a trip next summer and a friend asks, "But wont you be back on dialysis by then?" :stressed; I sure hope not.
Wow, what do these people think, that we go through all that just so we can have a year off of dialysis? WTF???
I usually get the opposite reaction, which is understandable. I have educated people that a kidney transplant doesn't last a lifetime, but you always hope it does! The non-CKD people in my circle seem to have an understanding about that, which I am thankful for!
KarenInWA
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Planning a trip next summer and a friend asks, "But wont you be back on dialysis by then?" :stressed; I sure hope not.
I've have knocked her head against some wood, 'cause I'm just superstitious like that...
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I am so sick of answering these questions:
Aren't you on the transplant list? no. The next questions is: Why not?
Is it anyone's business but my doctor's and my business why not!!! :sarcasm;
Sheez!
So what would be a good story or quip or thing to tell nosy people?
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I was told to just refuse to accept my disease and God would heal me.
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My Mom and Dad were first cousins so I won't match anyone.
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I am so sick of answering these questions:
Aren't you on the transplant list? no. The next questions is: Why not?
Is it anyone's business but my doctor's and my business why not!!! :sarcasm;
Sheez!
So what would be a good story or quip or thing to tell nosy people?
Hmmm....
Wasn't it Zach who used to say he couldn't stand the thought of being carved up like a Thanksgiving turkey?
What I've got so far:
No, you have to be sane to get on. ;D (Say this one totally deadpan, just so you can watch their faces while they work it out.)
No, they run a background check, and I didn't think I'd pass. You know how wild I used to be....
No, I had to pick between the transplant list and Santa's nice list. I opted for gifts/chose the loot/wanted the swag.
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:rofl; love those!
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I have educated my friends & family on my dialysis & awaiting a transplant. You can tell who your friends are when there super supportive!!!
But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I hate stupid people !!!
:Kit n Stik;
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OK this is not about dialysis, well it is. I am very petite, well thin really but I always have been. Hubby has been through the wringer a lot lately and with the stress I have lost weight. Saw a friend yesterday and she said "aren't you thin, you have lost a lot of weight" I frigging .know I have lost weight. So I said to her "thats not nice, I think you have got fat" That shut her up. I think I have lost a friend. :Kit n Stik;
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Billybags i can relate to that i'm short & thin & lost Weight a couple wks before My tx from stress then lost even more in hospital & people Kept saying i looked great but too thin. I got really upset bout it i'd just had major Surgery & was going so Well Why do people wa nna make you feel bad i'd never say Somcones fat why is it ok to bash thin people?! well am 7 wks post tX & been eating tons & have gained every clinic app loI am almost back to what i was before i lost pre tx am just happy my clothes have Started fitting!
Also i look young for 3O & Someone waiting for bloods asked me if my daughter was Mine then said he thought i looked I3! l8 or 2O is a compliment l3 is just rude lol!
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I hate stupid people !!!
:Kit n Stik;
i tell people that's where my alligator is, that usually shuts them up quick.
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Billybags i can relate to that i'm short & thin & lost Weight a couple wks before My tx from stress then lost even more in hospital & people Kept saying i looked great but too thin. I got really upset bout it i'd just had major Surgery & was going so Well Why do people wa nna make you feel bad i'd never say Somcones fat why is it ok to bash thin people?! well am 7 wks post tX & been eating tons & have gained every clinic app loI am almost back to what i was before i lost pre tx am just happy my clothes have Started fitting!
Also i look young for 3O & Someone waiting for bloods asked me if my daughter was Mine then said he thought i looked I3! l8 or 2O is a compliment l3 is just rude lol!
im the same way, i am 22, but eveeryone says i look 16 or 17, i actually was in walmart once and had my key set on the litte table abd the cashier asked me "whos keys r those?" im like "mine?" and then she said those aint your keys u cant be older than eleven.
now i dnt know where she lives, but i am 5'8" and about 160lbs, never have i seen and eleven year old of
another time, i was buying my dad cigarettes, and the guy IDd me and then said it had to be fake, cuz there was no way i was 21(i was at the time)... he would not sell them to me either had to go to another store, can u beleive that
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Oh, lainiepop and billy, please don't hate me, but I think there are many, many of us who could not conceive of anyone feeling hurt at being called thin. I had it drilled into me from a young age fat=insult, thin=compliment. Even when people were saying I was too thin, looked drawn, looked ill, I just never took it as anything but concern and/or control freakishness (parents, doctors). To this day, and back when I was in the depths of illness and weighed less than I did at age 13, I cannot refer to myself as thin. It just feels like I'm bragging. When friends would refer to me as thin I would usually answer 'I don't see myself that way, but thank you!'
I guess comments on one's body are always fraught and best avoided.
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i think it comes off more as an insult when ur self conscieous about your image. I think if your trying to gain weight or if you think your healthy, and someone comes along and contradicts you, it can come off as an insult. i have a friend that is really thin and she is self conscious and gets really upset when ppl say she thin. and let me tell she eats. i think it depends on the person, me personally i would like to lose a few belly lbs, but my boss told me i was looking too thin and i needed to eat more. i guess its just opinion and everyones different
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I had a co-worker ask me how long my husband was going to be on dialysis. Uh, what? I said, "Until he gets a transplant." She's like, "Really?!" I had to explain that his kidneys don't work, and he has to have dialysis . . . this is a person who works in health care, too. Wow.
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Thin isn't always a good thing when you are sick, but healthy people don't get that. I lost a lot of weight with my transplant complications. If I'd been thin to start - or even just at the upper limit of my BMI range, I would have been even weaker than I was.
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I call them my alien eggs
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I call them my alien eggs
I have had 2 members of my family(brother and aunt) tell me to cover my fistula arm for family gatherings because it nauseated them to see it, and they dont want to disgust anyone. I had to wear long sleeves to a summer wedding in texas....
Ive had a stranger ask me if i had implants in my arms.. that cracked me up. I looked at it for a minute, thinking , "COuld i say they were implants??" Too bad i couldnt get a snake or something tattooes over it!!!!
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Next family gathering - a henna tat!
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Wow gothic that's crazy. I dnt think I would done it. I wolda just been like its hot I am not wearing long sleeves n summer bc u r nauseated. That ur prob not mine.
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i almost didnt go. They dont seem to care too much for me... in fact, i havent really been invited to the last 2 family functions, idk why. I think I remind them too much of my late mother. Its unfortunate, because they are all I have left besides my father. My father is great though! (even if he is married to a psycho!)
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I call them my alien eggs
I have had 2 members of my family(brother and aunt) tell me to cover my fistula arm for family gatherings because it nauseated them to see it, and they dont want to disgust anyone. I had to wear long sleeves to a summer wedding in texas....
Ive had a stranger ask me if i had implants in my arms.. that cracked me up. I looked at it for a minute, thinking , "COuld i say they were implants??" Too bad i couldnt get a snake or something tattooes over it!!!!
I'm with you on the tattoo part it would be cool if we could :)
But that was rude of your family to say that.. Normally I try & wear 3/4 sleves because it covers it up but in 90 degree weather I want to wear tanks. I know if some of my friends or family had to wear a fistula for a day I know they'd feel self-conscious & be freaking out, lol
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I have had 2 members of my family(brother and aunt) tell me to cover my fistula arm for family gatherings because it nauseated them to see it, and they dont want to disgust anyone. I had to wear long sleeves to a summer wedding in texas....
Ive had a stranger ask me if i had implants in my arms.. that cracked me up. I looked at it for a minute, thinking , "COuld i say they were implants??" Too bad i couldnt get a snake or something tattooes over it!!!!
I actually have a family reunion this weekend and I was thinking about people seeing my fistula just this morning. It really sucks that your family isn't more supportive, but if it were me I'd want to just go in flaunting it, just to piss them off, haha.
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:2thumbsup; :clap;
sometimes, thats what you gotta do!
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:2thumbsup; :clap;
sometimes, thats what you gotta do!
Do it & tell them to kiss your :sir ken; they shouldn't make you feel bad for something you can't control!!
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OK, so mine was....
So you mean you won't be able to drink liquor?...like never?
(that seemed to be their main concern when I told them the news) :urcrazy;
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OK, so mine was....
So you mean you won't be able to drink liquor?...like never?
(that seemed to be their main concern when I told them the news) :urcrazy;
Ooo yes, I have heard that one too , & I used to tell them I dont have any kidneys ..you want me to stay drunk till my next dialysis session, lol
Here is another one... you dont pee??? they get very confused by that one, haha They think im an alien or somthing, :urcrazy;
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I call them my alien eggs
I have had 2 members of my family(brother and aunt) tell me to cover my fistula arm for family gatherings because it nauseated them to see it, and they dont want to disgust anyone. I had to wear long sleeves to a summer wedding in texas....
Ive had a stranger ask me if i had implants in my arms.. that cracked me up. I looked at it for a minute, thinking , "COuld i say they were implants??" Too bad i couldnt get a snake or something tattooes over it!!!!
I'm with you on the tattoo part it would be cool if we could :)
But that was rude of your family to say that.. Normally I try & wear 3/4 sleves because it covers it up but in 90 degree weather I want to wear tanks. I know if some of my friends or family had to wear a fistula for a day I know they'd feel self-conscious & be freaking out, lol
I DO wear tank tops and sun dresses. I live in a small town and if people here don't know the truth, they make something up! So I don't care what they think! :rofl;
GLM: you are welcome at my house any time! We could call it a family function!
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I DO wear tank tops and sun dresses. I live in a small town and if people here don't know the truth, they make something up! So I don't care what they think! :rofl;
GLM: you are welcome at my house any time! We could call it a family function!
I wear them too, I just hate when people are rude ! :rofl;
But the people who arnt rude seem very curious about dialysis & kidney transplants... & some have even asked for info on getting tested. Now if they did I'll probably never know since there not friends or family.
EDITED: Fixed quote tag error- kitkatz, Moderator
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My husband & I talked about this today. I asked if he thought my fistula is ugly. His response was "No, it just looks bruised sometimes". I agree, it does but actually, my eyes usually look worse. When I have put on more fluid than usual, I look like I have 2 black eyes! I'm not kidding! I had to go to the ER one night and they walked me out of the room (my husband was there) to go for a test and after we turned the corner, they started asking me why I had 2 black eyes! When I told my husband later, he was quite insulted!
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i would ask my husband if my PD cath bothered him. and he always answered no, the only thing that bothered him were all the scars on my stomach. he just misses when my stomach was normal. we were friends before i found out anything about my kidney failure, he was one of the first ppl i felt i could confide in, it was easy to talk to him, he knows i cant control it, and he doesnt hold it against me in any way, but he is honest so i trust when he tells me it ddnt bother him.
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But I HATE ....
When I'm out with friends or family & someone is like Eww.. whats that on your arm. I'm already self consious about how my arm looks do you think you need to make me feel worse? And I tell them its for my dialysis & then its like 20 questioins about why Im like this.
I call them my alien eggs
I have had 2 members of my family(brother and aunt) tell me to cover my fistula arm for family gatherings because it nauseated them to see it, and they dont want to disgust anyone. I had to wear long sleeves to a summer wedding in texas....
Ive had a stranger ask me if i had implants in my arms.. that cracked me up. I looked at it for a minute, thinking , "COuld i say they were implants??" Too bad i couldnt get a snake or something tattooes over it!!!!
I'm with you on the tattoo part it would be cool if we could :)
But that was rude of your family to say that.. Normally I try & wear 3/4 sleves because it covers it up but in 90 degree weather I want to wear tanks. I know if some of my friends or family had to wear a fistula for a day I know they'd feel self-conscious & be freaking out, lol
I DO wear tank tops and sun dresses. I live in a small town and if people here don't know the truth, they make something up! So I don't care what they think! :rofl;
GLM: you are welcome at my house any time! We could call it a family function!
Small towns SUCK! Ive heard everything, when i was ten i missed a bunch of school for a major surgery to remove a 25lb tumor, when i returned, people were saying I had cancer, aids, i was pregnant... o.0 really?
Id love to have a family function with ya'll!
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Small towns SUCK! Ive heard everything, when i was ten i missed a bunch of school for a major surgery to remove a 25lb tumor, when i returned, people were saying I had cancer, aids, i was pregnant... o.0 really?
Id love to have a family function with ya'll!
When I had a rejection episode as a kid and was out of school for a week, the biology instructor at school (who insisted on going by Dr. rather than Mr.) told all the teachers at the staff meeting that I was DEFINITELY going to need another transplant. He was right, it just took 25 more years for it to be necessary.
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I had the winner yesterday, I was talking with my sister and one of her friends and explaining I was tired because I took off 5 kilos on dialysis last night. Next question was how many pounds is that? I sad about 12lbs and her friend acutally said "How can I get on one of those machines that would be awsome to loose 12lbs in 3 1/2 hours". AMAZING!!!!!!!!!
Could they have said anything else that was stupid, people don't think..... :rant;
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I had the winner yesterday, I was talking with my sister and one of her friends and explaining I was tired because I took off 5 kilos on dialysis last night. Next question was how many pounds is that? I sad about 12lbs and her friend acutally said "How can I get on one of those machines that would be awsome to loose 12lbs in 3 1/2 hours". AMAZING!!!!!!!!!
Could they have said anything else that was stupid, people don't think..... :rant;
If only it were that easy, :rofl; At least you made me laugh tonight :)
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LOL i always "amaze" people with that... you lost ten lbs in 2 years? oh ya? i lost 14 lbs in like 3 hours wooohoooo! they look at me like im insane. :P
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Just had the must frustratitng comment about my surgical scare on the forearm. I was out with my nephews (4 & 8) and I had some NEW BORN RELIGIOUS NUT ask me "why did I try to kill my self and I needed to Find Jesus." After ripping this person a new one, explaining a few tidbits from the Old Testament and indirectly teaching my nephews a few colorful words; I realized I can get a transplant to fix my health issues, but this inbred moron has no hope of a transplant to fix his issues.
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Just had the must frustratitng comment about my surgical scare on the forearm. I was out with my nephews (4 & 8) and I had some NEW BORN RELIGIOUS NUT ask me "why did I try to kill my self and I needed to Find Jesus." After ripping this person a new one, explaining a few tidbits from the Old Testament and indirectly teaching my nephews a few colorful words; I realized I can get a transplant to fix my health issues, but this inbred moron has no hope of a transplant to fix his issues.
Wow.. That's horrible & to say that in front of your 4 year old nephew.
Good for you in putting him in his place & telling him off !!
What an jerk :Kit n Stik;
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Well done, chiromac!
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I've been lucky enough to have the same fistula for almost 12 years now. Unfortunately, though, I have basically a track mark that runs from about 2 inches above the rest (a little after where the fistula surgery scar ends) up to about an inch and a half shy of the end of my forearm. I also am one of those who only wears short sleeves (even in winter), wear my hair long, and tend to have a stubble.
For the most part, the general populace asking me what happened to my arm doesn't bother me. It gives me a chance to enlighten them a bit. What does bother me a bit is two things...both usually at the grocery store:
1) I can hear people whispering behind me in line, "Look at that guys arm," or "That guy must shoot up" or similar things like that.
2) The cashier will be all friendly to me until he/she sees my arm (like if I hand them some money) and you can see their eyes quickly glance at my arm, then they get that nervous smile/attitude where they are trying to act like they didn't see anything but you know they did. If I'm feeling particularly ornery when these happen, I'll sometime pretend to act all twitchy and meth-y.
I've always wanted to have two t-shirts made. The first would read on the front (in big letters) "I AM NOT AN IV DRUG USER" and the back would read "I am a dialysis patient". The second would read "Curious about the arm?" on the front and the back would read "It's okay to ask."
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I really like the second one, I wouldn't dare walking around with the first one. Way too many users where I would walk around. Might get yet another scar.
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I've been lucky enough to have the same fistula for almost 12 years now. Unfortunately, though, I have basically a track mark that runs from about 2 inches above the rest (a little after where the fistula surgery scar ends) up to about an inch and a half shy of the end of my forearm. I also am one of those who only wears short sleeves (even in winter), wear my hair long, and tend to have a stubble.
For the most part, the general populace asking me what happened to my arm doesn't bother me. It gives me a chance to enlighten them a bit. What does bother me a bit is two things...both usually at the grocery store:
1) I can hear people whispering behind me in line, "Look at that guys arm," or "That guy must shoot up" or similar things like that.
2) The cashier will be all friendly to me until he/she sees my arm (like if I hand them some money) and you can see their eyes quickly glance at my arm, then they get that nervous smile/attitude where they are trying to act like they didn't see anything but you know they did. If I'm feeling particularly ornery when these happen, I'll sometime pretend to act all twitchy and meth-y.
I've always wanted to have two t-shirts made. The first would read on the front (in big letters) "I AM NOT AN IV DRUG USER" and the back would read "I am a dialysis patient". The second would read "Curious about the arm?" on the front and the back would read "It's okay to ask."
:rofl; That reminds me of when I first moved here. (I did not have ESRD at the time) I had very long hair that I had braided in tiny snake braids. The first Christmas eve, I had gone into town because my husband had asked me to get him a Reese's candy bar. Knowing my husband, I picked up a "six-pack" of Reese's. As I was standing in line at the checkout, an old man in front of me turned around and said "Druggie". I looked at him and said, "Excuse me?" He answered, " I know how you drug addicts are needing your candy." The only thing I could think of saying was, "Yeah, that's it. I'm also wearing long sleeves NOT because it is -20* but to hide the track marks!" He just kind of huffed and walked off. I wonder what he would have thought if he could see me fistula! :rofl;
BTW - I LOVE the t-shirt ideas! Might have to steal them! :clap;
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I hate when this girl I know sees me out. She always compliments me on my weight loss and how it must be nice. She is very heavy so I guess me losing does look good to her. But it makes me mad because I would trade with her any day. Her weight can be fixed but I can' t be fixed.
Or when I am in a store and people stare at my arm. Usually I have lots of bruising and I have even heard people whisper that Marc must beat on me. Or people think you shoot up cause of the needle marks.
Also hate it when people think I have been a drug user cause they think thats the only reason a younger person would need dialysis....
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A worker saw my arm. My fistula is on my upper arm and i usually cover it with a cardigan at work cause I deal with lots of people. He saw my arm cause I only had a 3/4 length sleeve cardigan that was rolling up so he saw my first bump. and said oh my god will that every go away, your such a mess. Your will messed up health wise I'm lucky I am not you.
All i kept thinking was geez thanks. It put me in a depressed mood all day. How do you all deal with idiots like that? Besides my kidney problems I am in great health, I exercise etc.. And if I didn't tell people i am on dialysis they wouldn't know.
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you know, i think that sometimes people mean well but they aren't socially capable of expressing their concern or whatnot... its not like its taught in school. it should be. etiquit classes or something.
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I'm lucky I am not you.
How do you all deal with idiots like that?
Point to some flaw of theirs (bald head or pot belly, perhaps?) and sweetly say, "Golly, I'd hate to have to be you, too." >:D
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What a :sir ken; None of his business, you don't need to explain anything to rude people. He was obviously never taught manners by his momma. You could always just smile sweetly in response and say nothing, mentally visualizing him getting hit by a bus; he'll never know.
My :twocents;
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Thanks everyone. He has been saying stuff like this on and off for years to me. I just have to work with him for a month before I change jobs. But if he says anything at all like that again I am going to file a harassment complaint against him.
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Here's one that happens quite a bit and always makes me laugh...
I'm somewhere like a checkout line or at a fast food place and the cashier will ask (just being friendly), "How are you doing today"? I'll respond with "Okay, I'm on my way/just came from dialysis." to which they'll then ask, "Oh? Why do/What did you have to go to Dallas for?"
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Here's one that happens quite a bit and always makes me laugh...
I'm somewhere like a checkout line or at a fast food place and the cashier will ask (just being friendly), "How are you doing today"? I'll respond with "Okay, I'm on my way/just came from dialysis." to which they'll then ask, "Oh? Why do/What did you have to go to Dallas for?"
:rofl; :rofl; :rofl;
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Here's one that happens quite a bit and always makes me laugh...
I'm somewhere like a checkout line or at a fast food place and the cashier will ask (just being friendly), "How are you doing today"? I'll respond with "Okay, I'm on my way/just came from dialysis." to which they'll then ask, "Oh? Why do/What did you have to go to Dallas for?"
OMG! That is too funny! :rofl;
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"When are you going to get over all of this?"
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i love my boss to death and it was os funny when she asked my ths...
she cmoes up- to me and says i dnt know how to ask this w/o it sounding in appropriate... im like ok... so with the dialysis and all, u wont die on me... like in the immediate future w/o a new kidney..
i first laughed,m bc i just thought it was funny and then answered
my boss is a get strait to the point kinda woman, and to see her skip around the p[oint was just funny... and the question too. she is not afraid to ask questions, and she will bend over backwards for me with my health and stuff.
right now 2 months post transplant she yell at me for what she beleives is too much lifting for me...i came back to work 1 month exactly.. and until the doc puts it in writing shes not letting me do much.... and one of the other managers just laughs and says im the only one that gets yelled at for working in this place...
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Here's one that happens quite a bit and always makes me laugh...
I'm somewhere like a checkout line or at a fast food place and the cashier will ask (just being friendly), "How are you doing today"? I'll respond with "Okay, I'm on my way/just came from dialysis." to which they'll then ask, "Oh? Why do/What did you have to go to Dallas for?"
:rofl; :rofl; :clap; :rofl;
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This was not said to me but on my FB news feed:
"Oh horrible day! They had to take blood from me, it hurt so bad! I just hate those needles! Why oh why do we have to do this once a year?"
I read this after my Friday dialysis....ya. I was a bit** and posted back: "Well how about every month, then M-W-F and two 16 gauge needles in you arm 3 times a week and then you cannot move for 3.5 hours?"
I know I should of been nice and ignored it but it was just a looooooooooooooong first week on dialysis.
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This was not said to me but on my FB news feed:
"Oh horrible day! They had to take blood from me, it hurt so bad! I just hate those needles! Why oh why do we have to do this once a year?"
I read this after my Friday dialysis....ya. I was a bit** and posted back: "Well how about every month, then M-W-F and two 16 gauge needles in you arm 3 times a week and then you cannot move for 3.5 hours?"
I know I should of been nice and ignored it but it was just a looooooooooooooong first week on dialysis.
Not to mention if/when you're post-tx and having issues. Then they'll take blood from you every day/week/twice a month depending on the transplant center and how long it's been since your tranplant, and if you're having issues or not! I'm lucky, I'm an easy stick and needles don't bother me. For those who whine about once a year, all I can say is - WIMPS!!!
KarenInWA
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This was not said to me but on my FB news feed:
"Oh horrible day! They had to take blood from me, it hurt so bad! I just hate those needles! Why oh why do we have to do this once a year?"
I read this after my Friday dialysis....ya. I was a bit** and posted back: "Well how about every month, then M-W-F and two 16 gauge needles in you arm 3 times a week and then you cannot move for 3.5 hours?"
I know I should of been nice and ignored it but it was just a looooooooooooooong first week on dialysis.
You only use 16-guage needles?!
Psshht...you've got it easy.
;)
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My new fistula works, but I hate needles. I plan to go CAPD soon.
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This was not said to me but on my FB news feed:
"Oh horrible day! They had to take blood from me, it hurt so bad! I just hate those needles! Why oh why do we have to do this once a year?"
I read this after my Friday dialysis....ya. I was a bit** and posted back: "Well how about every month, then M-W-F and two 16 gauge needles in you arm 3 times a week and then you cannot move for 3.5 hours?"
I know I should of been nice and ignored it but it was just a looooooooooooooong first week on dialysis.
You only use 16-guage needles?!
Psshht...you've got it easy.
;)
I hate when people complain about that, they wouldn't last a day in our shoes !!! :boxing;
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Ed and I have had other dialysis patients at his center and several nurses.
"your are so lucky, he knows what you are going through" or "that's great you are both having kidney failure, because you know what the other is feeling"
I still don't know how anybody could think it was a good thing. If their loved one was ESRD they would not think it was a good thing!
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"your are so lucky, he knows what you are going through" or "that's great you are both having kidney failure, because you know what the other is feeling"
:banghead; :Kit n Stik; :puke;
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"your are so lucky, he knows what you are going through" or "that's great you are both having kidney failure, because you know what the other is feeling"
:banghead; :Kit n Stik; :puke;
I LOVE your reaction to this jbeany... but somewhat understated, don't you think :shy;
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"your are so lucky, he knows what you are going through" or "that's great you are both having kidney failure, because you know what the other is feeling"
:banghead; :Kit n Stik; :puke;
I LOVE your reaction to this jbeany... but somewhat understated, don't you think :shy;
Seriously, they might as well say, "It's so convenient that you both have a terminal illness at the same time! Whoever dies last won't be alone long that way."
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"When are you going to get over all of this?"
I'd answer that with, "when you bend over and kiss my a@@"
"your are so lucky, he knows what you are going through" or "that's great you are both having kidney failure, because you know what the other is feeling"
I had a dream while in dialysis once, that my best friend was there as well. I watched her getting out of her chair, and saw the big, white bandaids on her arm, and watched her go to the scale. Then she came and sat next to me, waiting for me to be finished. When I woke up, I looked around, and almost asked one of the nurses where she went. Then it clicked in that she wasn't there, and I don't think I was ever so happy, because she's not on dialysis. It's not something I would wish on anyone, especially not someone that I love
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The stupidest thing was when someone asked if I was contagious and if it was legal for me to be cooking, and serving food! I would have asked if stupidity was contagous, but decided I wanted to keep my job.
Smiles,
Ricki
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I've been volunteering recently and had an older gentleman (early 80s) come into the office. He pulled up a chair and wanted to talk and eventually noticed my fistula/buttonholes. Naturally he asked about it and I explained; I had my dialysis photo album in my laptop bag and showed him a few pictures of my set up. One of the pictures is me flashing a big grin at Andy after I was up and running.
He pointed at that picture and said, "You can SMILE about that? That's awful. Just awful. I've seen men killed in front of me in WWII and this is much worse than that. Awful. Just awful."
I was completely unable to get him to see the bigger point, i.e: that we wouldn't be having this conversation without dialysis because I'd be six feet under! He just couldn't see it and kept shaking his head saying, "That's awful. Just awful."
Gee, thanks! :banghead;
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I've seen men killed in front of me in WWII and this is much worse than that. Awful. Just awful."
Much worse? Seriously? I just don't get that attitude at all. How can you possibly equate the misery that is young men dying on a battle field to dialysis? Oh, I grant that it can be miserable, and it is horrible that we're sick - but how does that even begin to compare?
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I've seen men killed in front of me in WWII and this is much worse than that. Awful. Just awful."
Much worse? Seriously? I just don't get that attitude at all. How can you possibly equate the misery that is young men dying on a battle field to dialysis? Oh, I grant that it can be miserable, and it is horrible that we're sick - but how does that even begin to compare?
You got me. I was gobsmacked when he said that and thought he surely couldn't be serious. He just seemed utterly horrified and kept repeating, "Awful. Just awful".
I couldn't seem to convince him it was better than the alternative so I just gave up. What the hell do you say to that?
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Today a woman asked why Jenna is still looking for a kidney donor. She said she just needs a person willing to swap if she doesn't have a match. Right! We don't have a donor. These swaps and chains are wonderful, but if no one is willing to get evaluated on Jenna's behalf, she cannot swap! There is no pool of willing living donors. You have to bring your own. It's not easy.
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A worker saw my arm. My fistula is on my upper arm and i usually cover it with a cardigan at work cause I deal with lots of people. He saw my arm cause I only had a 3/4 length sleeve cardigan that was rolling up so he saw my first bump. and said oh my god will that every go away, your such a mess. Your will messed up health wise I'm lucky I am not you.
All i kept thinking was geez thanks. It put me in a depressed mood all day. How do you all deal with idiots like that? Besides my kidney problems I am in great health, I exercise etc.. And if I didn't tell people i am on dialysis they wouldn't know.
I'm pretty sure should just be peeved instead of depressed. I am a crazy person, and I can't tell people exactly what I think because I have a naturally sharp tongue and so spend a lot of time saying "nothing at all" rather than being a jerk, so I know I would be pacing and talking to myself, going through all of the nasty things I COULD have said, once I was alone at home. Then my husband would walk in, laugh at me, pick up one of the cats and say "Mama is crazy. See? Mama's crazy ADD is making her talk to herself again."
ugh. That guy was a jerk. I may go home and pace and think about YOUR situation, it's such a maddening one. Side note, I forget that my fistula is pretty bulgy now, and I get excited and show people, not realizing that at their angle it looks pretty hairy. Whatever, dude. They can deal.
:rant;
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So, this wasn't about me specifically, but I keep hearing similar complaints, and today had to post!
I work for a university, and people call me and complain about handicapped parking. At our university, students can get University-issued handicapped parking stickers, even if (for whatever reason) they haven't gotten a state-issued tag or sticker. I get calls multiple times a week, send officers to check, and invariably for the last half-dozen at least, these have been those disability office-issued stickers (they have very tiny symbols on an otherwise normal parking sticker).
Today I got a call from an irate female student, and I tried to explain that the University gives out these stickers, so while of course I will send an officer, it is likely an authorized vehicle (which I found out a few minutes later, it was). She was very upset, and said the person was walking and "wearing a backpack and everything." Sigh. I said, she could have CF, or other breathing problems, or kidney disease, etc., and though she might not LOOK disabled, she might indeed have an issue necessitating the sticker.
Usually people are mollified by this, but the girl exploded, and said that "There aren't that many SPECIAL students on this campus that need to suck up all these parking spaces!"
Meanwhile, I am getting other calls on the radio, and my timer says we've been talking 4 minutes, and I'm thinking of my bosses who have asked "why don't you just hang up on [people who are just complaining for no good reason] ?" So I said, "I can't stay on the phone much longer, so if you haven't got anything else that you need help with, I have to go. I am sending and officer to check, OK?"
I keep the nice in my voice, but wanted to be mean, for sure. Usually all I want is to help and calm people, but she really got me revved up. She was also distracting me from my work with BS that is none of her business. She asked how I knew that people weren't using other people's handicapped tags.....I answered that that was not a common problem. She kept bringing it up. What does she want us to do, hunt down all the people who don't walk with a limp and demand their papers like little parking SS soldiers? Does she think police can do that? Would she be comfortable having her medical information demanded of her? I was flabbergasted, because, really, what the heck does she think I am going to do? We have no authority to demand proof from people. If people do get caught using another person's tag (even if you are actually disabled), the real owner of the tag will LOSE the tag and possibly pay a fine. We caught someone the other day on that, and gave her a stern warning (she had broken her foot). If you really need the tag, get a temporary or apply for a permanent, but don't put your disabled loved one at risk for fines and loss of the tag. (tangent, sorry).
I am truly worried that one of these days, these kids who don't want to park a little further away and threaten each other over front-row spots, will see another disabled but healthy-looking person, and just pound them, or key their car or something, in retaliation for a supposed wrong.
:rant;
10-31-12 (Happy Halloween!). I edited this cause of the gross amount of auto-correct errors. Also, this woman has called a few more times, and the last time, she advised that she saw a woman put her bag in her car (in a handicapped spot), and walk towards the school. She was "young, and looked totally fine, just walking," so the caller approached her and angrily asked if she "Really needed to be here."
Ugh. The girl reportedly looked scared and "ran off." Wouldn't you? She might be malingering, but really. I asked the caller if she was this upset when she talked to the girl, and she said "Yeah!" Derp.. Next time I'm pulling a kidney card on the kid. :banghead;
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So, thesis about me specifically, but I keep hearing it, and today had a soapy.
I work for a university, and people call me and complain about handicapped parking. At our university, students can get University-issued handicapped working stickers, even if (for whatever reason) they haven't a state-issued tag or sticker. I get calls multiple times a week, send officers to check, and invariable for the last half-dozen at least, these have been those disability office-issued stickers (they are very tiny symbols on an otherwise normal parking sticker).
today a got a call from a on irate female student, and I tried to explain that the University gives out these stickers, and that I will send and officer, but it is likely an authorized vehicle (which I found 8ut a few minutes later, it was). She was very upset, and said the person was walking and "featuring a backpack and everything." Sigh. I said, she could have CF, or other breathing problems, or kidney disease, etc., and though she might not LOOK disabled, she might indeed have an issue necessitating the sticker.
usually people are mollified by this, but the girl exploded, and said that "There aren't that many SPECIAL students on This camous that need to suck up all these parking spaces." Meanwhile, I am getting other calls on the radio, and my timer says we've been talking 4 minutes, and I'm thinking of my bosses who have asked "why don't you just hang up on [people who are just complaining for no good reason] ?" So I said, "I can't stay on the phone much longer, so if you haven't got anything else that you need help with, I have to go. I am sending and officer to check, OK?" I keep the nice in my voice, but wanted to be mean, for sure. Usually all I want is to help and calm people, but she really got me revved up. She was also distracting me from my work with BS they is none of her business. She asked how I knew that people weren't using other people's handicapped tags.....I answered that that was not a common problem. She kept bringing it up. What does she want us to do, hunt down all the people who don't walk with a limp and demand their papers like little parking SS soldiers? Does she think police can do that? Would she be comfortable having her medical information demanded of her? I was flabbergasted, because, really, what the heck does she think I am going to do?
I am truly worried that one of these days, these kids who don't want to park a little further away and threaten each other over front-row spots, will see another disabled but healthy-looking person, and just pound them, or key their car or something, in retaliation for a supposed wrong.
:rant;
I hate to wish ill of anyone - but don't you wish some people would come down with a horrible illness? Karma just doesn't work fast enough to suit me some days....
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I'm in the hospital due to a catheter infection (CCPD). I had to go on Hemo Perma-Cath. for now until I decide what is best for me do to in the future. I may do home-hemo. Anyways. My friend's mother asked me today If I thought about going off dialysis and getting a transplant instead? Um.... HELLO?! This would not be my first choice if I could get a working kidney!!! :Kit n Stik;
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I'm in the hospital due to a catheter infection (CCPD). I had to go on Hemo Perma-Cath. for now until I decide what is best for me do to in the future. I may do home-hemo. Anyways. My friend's mother asked me today If I thought about going off dialysis and getting a transplant instead? Um.... HELLO?! This would not be my first choice if I could get a working kidney!!! :Kit n Stik;
I get this one quite a bit. I think despite the constant news about the scarcity of of organ donors, most people think that it's easy to get a kidney.
"Why don't you just get a transplant?" they ask.
I usually respond (depending on my mood), "Are you offering to donate a kidney to me? Great!"
You can see the horror subtly creep into their face. Quite often, I get back, "Umm, well, errr...I don't think I'm the same blood-type/probably not a match/some other lame excuse."
For that, I respond with, "Oh, that's okay. They can cross-match kidneys now! You'll kidney will go to someone who matches you who has a donor who will matched with me!"
After getting them trapped in a corner without a way out without making them look like a complete tool, I'll let them off the hook with, "Oh, I'm just kidding. I'd never ask you to do that for me."
Heh...guilt....
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thats because on almost every tv show.. they go to the hospital, and they have kidney failure.. and the next day they walk out with a new kidney...
when im watching anything and the person goes to the hospital and is diagnosed kidney failure... i wont even watch anymore...
about the handicapped parking..before i was on dialysis, i used to get kinda upset when i saw ppl my own age in those parking spaces. i figured they were using someone else's car like their grandparents. now i am sure some of them did but perhaps not all of them
I was 18-21 when i was on dialysis, i had a smooth transition and i ddnt really notice a difference. i ddnt look or act as if anything were wrong with me. when i started my job as a server, nobody even knew for the first 6 months... if i hadnt gotten an infection, im not sure if i would have told them. but im glad thing played out as they did. i know i have an awesome boss that will bend over backwards if i needed anything healthwise.
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thats because on almost every tv show.. they go to the hospital, and they have kidney failure.. and the next day they walk out with a new kidney...
when im watching anything and the person goes to the hospital and is diagnosed kidney failure... i wont even watch anymore...
That's true. There was a show on a few years ago, called Three Rivers. It was about a transplant centre. Some of what was going on was inaccurate, but for the most part, it was pretty good. It only lasted one season, though.
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thats because on almost every tv show.. they go to the hospital, and they have kidney failure.. and the next day they walk out with a new kidney...
Kind of like how every local news station has a story about how someone "needs a kidney transplant to live." No, they don't. They can go on dialysis like everyone else. Friggin' drama queens.
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Amen to that . i doidnt mention that about the tv shows. but they say that all the time, and also love this one, we will get her moved to the top of the list... um hello, what about all the other people that are aparently dying for their kidney too. so aggravating. also theyt treat it liek la cure. like changing a tire on a caar. heres ur kidney now ur good to go u'll never have to come to a dr or hosiptal again. its a trreatment not a cure, still have to take pills for the rest of the life of the kidney, and still have to be conscious of symptoms of rejection. and some people will have to have more than one or two, or possilbly 3.
when my hbby watches these episode... half way through im yelling at the tv, and my hubby telling me its just a tv show. this is wher ppl seem to think they know everything about kidney failure, like we choose dialysis over a new kidney.
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My transplant was Jan 26, 2012, my brother's was 2 days ago. My mom keeps calling me to tell me all about my brother's pain and procedures and medication and restrictions like she's never heard of these things before. Which she hasn't because she NEVER listens to a word I say!!!!! GRRRR!
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I love this thread! I'm glad I'm not the only person who has to suffer through the stupid comments of family, friends and strangers.
I think the most common question I've gotten since I was diagnosed with ESRD a little over a month ago is, "won't your kidneys ever come back (or start up again)?" I have also had a number of friends suggest I see an herbalist or massage therapist or even try reiki. One friend offered to send me "distance Reiki" (Whatever that is) to heal my kidneys.
The worst thing that anyone has said to me was right after I was diagnosed and I was still in the hospital. My father's wife insisted that I had to repent to Jesus right away because I didn't have time to hesitate. Way to make someone who has just been given a life-altering diagnosis that they don't know much about totally freak out at the possibility of their own death! Fortunately there are forums like this that make me feel much better about the long-term prognosis of ESRD.
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thats because on almost every tv show.. they go to the hospital, and they have kidney failure.. and the next day they walk out with a new kidney...
Kind of like how every local news station has a story about how someone "needs a kidney transplant to live." No, they don't. They can go on dialysis like everyone else. Friggin' drama queens.
Thank God.. I knew I couldn't be the only one who thought this. People who advertise for donors bug me. I know I'll get b*tched out for that, but it's true. I'm going on 8 and a half years on dialysis, waiting for my 3rd kidney, and I've never once gone to a newspaper or tv station to tell my "story" and I dono't intend to. Any time I have talked to reporters or others about my experiences, it was for advocacy, not personal gain.
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I'm in the hospital due to a catheter infection (CCPD). I had to go on Hemo Perma-Cath. for now until I decide what is best for me do to in the future. I may do home-hemo. Anyways. My friend's mother asked me today If I thought about going off dialysis and getting a transplant instead? Um.... HELLO?! This would not be my first choice if I could get a working kidney!!! :Kit n Stik;
I get this one quite a bit. I think despite the constant news about the scarcity of of organ donors, most people think that it's easy to get a kidney.
"Why don't you just get a transplant?" they ask.
I usually respond (depending on my mood), "Are you offering to donate a kidney to me? Great!"
You can see the horror subtly creep into their face. Quite often, I get back, "Umm, well, errr...I don't think I'm the same blood-type/probably not a match/some other lame excuse."
For that, I respond with, "Oh, that's okay. They can cross-match kidneys now! You'll kidney will go to someone who matches you who has a donor who will matched with me!"
After getting them trapped in a corner without a way out without making them look like a complete tool, I'll let them off the hook with, "Oh, I'm just kidding. I'd never ask you to do that for me."
Heh...guilt....
You mean you can't just go to the kidney store and pick one up?
DUH ::)
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You mean you can't just go to the kidney store and pick one up?
DUH ::)
now, wouldn't that be cool....
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I love this thread! I'm glad I'm not the only person who has to suffer through the stupid comments of family, friends and strangers.
I think the most common question I've gotten since I was diagnosed with ESRD a little over a month ago is, "won't your kidneys ever come back (or start up again)?" I have also had a number of friends suggest I see an herbalist or massage therapist or even try reiki. One friend offered to send me "distance Reiki" (Whatever that is) to heal my kidneys.
The worst thing that anyone has said to me was right after I was diagnosed and I was still in the hospital. My father's wife insisted that I had to repent to Jesus right away because I didn't have time to hesitate. Way to make someone who has just been given a life-altering diagnosis that they don't know much about totally freak out at the possibility of their own death! Fortunately there are forums like this that make me feel much better about the long-term prognosis of ESRD.
heh reminds me of my brother who told me i had failing kidneys because i am a sinner, and that im also possessed (at which point he slapped me on the head with a crusifix and said devil be gone)
ive been told to pray by countless people, to heal myself... which is a kind though, ok, but really, even if i prayed every day for the rest of my life, my kidneys wont heal... its transplant or dialysis forever.
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I just saw my recent post, and I apologize, bits of it don't make sense. My touchpad rewrote my words, and I can't always scroll up to edit for some reason. Sorry, I have no idea what I even meant to write in the first line.... :banghead;
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I'm in the hospital due to a catheter infection (CCPD). I had to go on Hemo Perma-Cath. for now until I decide what is best for me do to in the future. I may do home-hemo. Anyways. My friend's mother asked me today If I thought about going off dialysis and getting a transplant instead? Um.... HELLO?! This would not be my first choice if I could get a working kidney!!! :Kit n Stik;
Wait, you can transplants now? Awesome!
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You mean you can't just go to the kidney store and pick one up?
DUH ::)
If the University of Toledo Medical Center was running the store, that "trashy" nurse would be on the PA system yelling, "Clean up in OR 6!"
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You mean you can't just go to the kidney store and pick one up?
DUH ::)
If the University of Toledo Medical Center was running the store, that "trashy" nurse would be on the PA system yelling, "Clean up in OR 6!"
:rofl; :rofl; :rofl;
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I love this thread! I'm glad I'm not the only person who has to suffer through the stupid comments of family, friends and strangers.
I think the most common question I've gotten since I was diagnosed with ESRD a little over a month ago is, "won't your kidneys ever come back (or start up again)?" I have also had a number of friends suggest I see an herbalist or massage therapist or even try reiki. One friend offered to send me "distance Reiki" (Whatever that is) to heal my kidneys.
The worst thing that anyone has said to me was right after I was diagnosed and I was still in the hospital. My father's wife insisted that I had to repent to Jesus right away because I didn't have time to hesitate. Way to make someone who has just been given a life-altering diagnosis that they don't know much about totally freak out at the possibility of their own death! Fortunately there are forums like this that make me feel much better about the long-term prognosis of ESRD.
heh reminds me of my brother who told me i had failing kidneys because i am a sinner, and that im also possessed (at which point he slapped me on the head with a crusifix and said devil be gone)
ive been told to pray by countless people, to heal myself... which is a kind though, ok, but really, even if i prayed every day for the rest of my life, my kidneys wont heal... its transplant or dialysis forever.
Here's your response to anyone that says you're kidneys failed because of sin and they'll get better if you repent: Ask them about the Apostle Paul. He had a "thorn in the flesh". He asked GOD 3 times to remove it. GOD refused. We are no better or worse than Paul (who murdered Christians just because!) So ask them to explain it to you again! That usually gets them to shut up long enough to think a little. I've never had anyone come up with a good explanation after that.
Some people are sooo ignorant! :rofl;
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I know this has been posted before, but I am SOOOOOO TIRED of people everywhere saying... "Oh, you're so young!" Yes, I know, I'm 29...things happen to young people too. However, they make it out to be somewhat of a tragedy... like it's my death sentence... sure it's life-threatening, but I'm not giving up.
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I am SOOOOOO TIRED of people everywhere saying... "Oh, you're so young!"
I'm 38, but I look much younger and I get this all the time! I don't know why people say this. It just makes me feel worse because I already feel too young to be in kidney failure, so I don't really care to be reminded of it.
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i got a ... strange compliment? i think? the other day, a lady said i look really good for being on dialysis...
Yes, its a compliment im sure, but its still kind of annoying, am i supposed to give up and not try anymore just because i have illness??
i admit on D days i dont try and half the time i wear my pajamas lol but on off days? really?
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People must think that Dialysis isn't for the younger people.. (I'm 29) & if I had a penny for every time I was told ... I'm to young for dialysis or I'm to pretty to be on dialysis ... OR ... I look good for being on dialysis I would be RICH!!
:rofl;
The best is when someone tells me they know I will get a kidney this year or in past years ... its been 7 yrs later & where is this kidney???
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were they volunteering? Maybe you should have the paperwork handy just in case.....
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People must think that Dialysis isn't for the younger people.. (I'm 29) & if I had a penny for every time I was told ... I'm to young for dialysis or I'm to pretty to be on dialysis ... OR ... I look good for being on dialysis I would be RICH!!
:rofl;
The best is when someone tells me they know I will get a kidney this year or in past years ... its been 7 yrs later & where is this kidney???
That goes along with all the 'Really? You don't look sick" comments I get.. but that also goes with the "you're not really blind cuz you can still see" comments I get as well ::)
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The worst thing that anyone has said to me was right after I was diagnosed and I was still in the hospital. My father's wife insisted that I had to repent to Jesus right away because I didn't have time to hesitate.
I always wanted someone to bring up religion being the cause of my kidney failure just so that I could point out that I must have had ticked off God in precisely the same way as my brother, mother, grandfather, and great-grandfather. That's not a personal punishment from a modern deity, that's a curse from a Greek tragedy.
Instead, I'll have to save my wrath for those who thank God/Jesus for getting them a transplant but fail to blame God/Jesus for needing it in the first place.
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I always wanted someone to bring up religion being the cause of my kidney failure just so that I could point out that I must have had ticked off God in precisely the same way as my brother, mother, grandfather, and great-grandfather. That's not a personal punishment from a modern deity, that's a curse from a Greek tragedy.
Instead, I'll have to save my wrath for those who thank God/Jesus for getting them a transplant but fail to blame God/Jesus for needing it in the first place.
Love it :bow; I had the preparation-nurse just before I received my dad's kidney, say that I should have prayed more, I never could respond to her, as I went under. Coward, I'm sure she was counting
:angel;
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Well, I'm thankful.
I do think that I was a real shit to other kids when I was young. Maybe that is why my kidneys failed. It has made me closer to God because I want the promise of eternity without sickness. I'm claiming it now.
:waving;
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when a taxi driver saw my arm, where the veins are getting larger. he told me.
"Are you injured? are your arms broken? are you skateboardigng?"
well of course i don't want to narrate my situation, (we had a long ride)..
i just did say yes, and i said "better stop skateboarding now"..
and then i had a quite journey.
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the other day as I'm waiting for them to call me back to be put on dialysis.. another dialysis patients asks.. why I'm still on dialysis? :Kit n Stik; its kind of hard to stop D without a kidney!
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the other day as I'm waiting for them to call me back to be put on dialysis.. another dialysis patients asks.. why I'm still on dialysis? :Kit n Stik; its kind of hard to stop D without a kidney!
That was a stupid question..
I kinda like fooling with other patients that don't know me that well. I wait for the right question.. has to be "how long have you been doing this?" I say, "twenty years." They just look at me funny. It's true, I started dialysis in 1991, but if they're not specific, I won't answer specifically.
Then there's the question, "how long have you been coming here?" The unit has only been open since September, so I'm honest when I answer their question too..
I'm a jerk.. *LOL*
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the other day as I'm waiting for them to call me back to be put on dialysis.. another dialysis patients asks.. why I'm still on dialysis? :Kit n Stik; its kind of hard to stop D without a kidney!
That was a stupid question..
I kinda like fooling with other patients that don't know me that well. I wait for the right question.. has to be "how long have you been doing this?" I say, "twenty years." They just look at me funny. It's true, I started dialysis in 1991, but if they're not specific, I won't answer specifically.
Then there's the question, "how long have you been coming here?" The unit has only been open since September, so I'm honest when I answer their question too..
I'm a jerk.. *LOL*
That is pretty funny though... I got another one...
On Wednesday I was on the machine & this guy aside of me over heard me talking to the nurse about the transplant list.. he then asks me.. don't they just have a place where they keep spare kidneys & can hand them out?
It was so hard for me to hold back laughing, but I explained it all to him & he was very surprised by it all! he though once you get on the list you get a kidney right away.
I wish it was that easy!!! :rofl;
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Oh yeah... if only.. it's amazing how ignorant people can be about the whole process.. it's no wonder there's a shortage of donors, if they think there's a stockpile somewhere...
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Recently while I was in Sydney to support my sister and her hubby when he gave her one of his kidneys (and they are both recovering amazingly well!) I was speaking to a lady who was asking how it all happened. When I said they'd both undergone surgery the same morning, she was astounded: "So the doctors just took out one of his kidneys and put it straight in to your sister?", she asked. Yep, there's that cupboard thing looming again. What was this lady thinkinh? That they would tape him up and store it for a few days on a cupboard somewhere before passing it on :rofl;?!
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Numerious times I've been asked, "You still have to go do that dialysis stuff?" Answer "Yes".
Then from the real lulus (and there are a lot of them out there) get "How much longer are you going to have to do that?" Standard answer now after getting sick of this particular question "Doc says I can quit whenever I want to." Then I quickly add "I'll die in about 2 weeks but I don't have to go if I don't want to."
Get the shocked face from them and they move on.
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Okay, here's the one that caught me of guard. When i told my primary physician i had chosen to go on PD his comment was "Oh, I thought that was only for people who were gettting a transplant in the near future". All i could think of was Homer Simpson "Doh".
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doctors are just as stupid as anyone else... trust me, I've seen many different ones since 1991...
The best was the time I was in the ER with a throat infection, and Mom and I both could hear the 2 doctors arguing over who was going to take me.. they'd seen on my chart that I was on dialysis and neither wanted me.. Mom ducked her head out the door and told them that i had a throat infection, and that seemed to calm them down..
being a kid on dialysis in this province was a pain in the neck.. but then, I was the only one, so that could have been the problem.... *G*
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I've been at the same Dialysis center for 7 months now and to this day they STILL ask me if I am a diabetic! I'm not going to answer them any more. Plus, a friend commented that I must drink a lot of water. No, I told her before I am limited to 4 cups a day so I only do ice. Why do people ask questions if they don't listen in the first place?
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Sometimes you have to keep telling them until it sinks in.. It took years for my Dad to figure out that what he thinks is healthy is great for him, but is not for me
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my family still struggles with some of that as well. My dad is usually really good about asking me what i can have, if hes cooking dinner for us. Noone else really does, and they make the worse things i could possibly have LOL And the fluid is like a huge issue with everyone.
my guess is they just dont fully understand the consequences... so its not always on their minds like it is ours...
And, then, there are folks like my brother, who just dont care. His words, "I dont care about a fluid restriction, if i am thirsty, i will drink, and deal with the cramps and whatnot." HA! good luck with that, if you ever have to deal with it! ya jackass!
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I get the "are you diabetic" from everyone in the health care field. I want it tattooed on my forehead "I AM NOT DIABETIC!!" :banghead;
My latest aggravation is about the transplant list. I get "I don't know why you haven't gotten a kidney yet" and "Where are you on the list?" I don't know why I haven't gotten a kidney yet, your guess is as good as mine. Guess I'm not praying hard enough to the kidney gods. :Kit n Stik;
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I think I posted this before. When people ask, is Jenna on the list, I say, "There's a list?"
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After my transplant, "Now how long will this kidney last?"
WishIKnew
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The dialysis tech last year who told me " Drink a lot of fluid to help your cold go away." I laughed.
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doctors are just as stupid as anyone else... trust me, I've seen many different ones since 1991...
I was recently in the hospital and encountered MDs who:
- Didn't understand the term "residual function" when used in a renal context
- Did not understand why I was transfusion adverse, and actually said "I didn't know that" when I mentioned antibody sensitization
- Were not aware that home hemodialysis exists
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I was recently in the hospital and encountered MDs who:
- Didn't understand the term "residual function" when used in a renal context
- Did not understand why I was transfusion adverse, and actually said "I didn't know that" when I mentioned antibody sensitization
- Were not aware that home hemodialysis exists
Then there are doctors who seem to have never heard of the field of genetics and refuse - refuse! - to believe others in your family have/had the same disease. Really? I mean, did you sleep through every one of your biology classes?
I get the "are you diabetic" from everyone in the health care field. I want it tattooed on my forehead "I AM NOT DIABETIC!!" :banghead;
I am so with you on this. I've had docs order blood sugar tests even after being told REPEATEDLY that I'm not diabetic.
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In the year since my bilateral mastectomy and kidney transplant I have, unfortunately, gained a lot of weight. I was commiserating with a friend last night after yoga when she said, "You may be as big as a house as long as you're on the right side of the dirt." WTF! Stupid and not helpful, wouldn't you agree? :urcrazy;
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In the year since my bilateral mastectomy and kidney transplant I have, unfortunately, gained a lot of weight. I was commiserating with a friend last night after yoga when she said, "You may be as big as a house as long as you're on the right side of the dirt." WTF! Stupid and not helpful, wouldn't you agree? :urcrazy;
Yeesh, that's bad!
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I don't know.. sounds about right to me.. sound like she was trying to say that you gotta be happy in your own skin, and you've been through too much to worry about weight, as long as you're active, happy, and healthy, that's all that really matters..
That's what I always believed anyway. My transplant surgeons are telling me otherwise at the moment
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Riki, what are your transplant surgeons trying to tell you?
I'm not happy in my own skin, I'm mortified by how much I weigh! My oncologist and transplant team have never expressed any concern about my weight gain, but I'm miserable about it.
I feel like I did not live through all of that to spend the rest of my life fat... blah blah blah. I guess all other health issues aside, I don't like me at this weight, period. And a friend referencing me as potentially as big as a house does not help... Make sense?
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Yes, WIK, this makes sense.
I wish there was more information about how to lose weight while on long-term steroids. I've gained about 5 lbs despite being diligent about what I eat, how much I eat and how much exercise I get. Steroids mess with how your metabolism works; all the docs warn us about this, but they never tell us how to lose weight. They treat it as just part of the price you have to pay.
Do you think it would be an idea to ask your tx team how a person on longterm steroids should hope to deal with this problem? I'm going to ask the next time I have a clinic visit. I weigh myself every morning as instructed, and one thing I have noticed is that my body seems to now be particularly sensitive to sodium. If I happen to eat something salty for dinner, I'm heavier the next day. Constant activity also seems to help me keep my weight down, but constant activity is exhausting!
It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it. When you look in the mirror and don't recognize yourself, it's really offputting.
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Then there's me. I've always been skinny, no matter what I eat. I have gained probably around 10lbs since my transplant. I've had to donate some size 8 jeans and pants, and even some size 10. I buy size 12 now. However, I like and have embraced my new size. I am still within the healthy BMI limits. Where before I was usually on the lower end of it, now I am on the higher end. Over the past 5 years, I have weighed as litte as 120lbs and now as high as 155lbs. I can tell you I am much happier weighing 155! I am 5'8".
A male co-worked came up to me a few months ago. He has always over the years make occasional comments about how skinny I am. He told me one day that I looked like I had gained weight - and that he meant that in a good way. I told him that yes I had, and thank you. It was an interesting exchange, but I appreciated it. I sometimes would get comments from people about how skinny I was, and it always bothered me. I never starved myself. I was just always skinny.
Just a different take.
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Thanks for understanding MooseMom and others.
I have discussed my weight frustrations both with the oncologist and the transplant team. They offer no suggestions, reassure me that weight gain is normal and expected and tell me how great my labs are. With Weight Watchers and yoga and walking and... I am barely able to maintain my 50 pound weight gain in the past year (meaning not gain more). I weigh 100 pounds more than I did when I first got sick 5 and a half years ago. Just plain not acceptable to me. Inactivity and depression account for the first 50 over 4 years, Tamoxafin (chemo med) and menopause and transplant meds and depression account for the most recent 50, they say. Oh, I know I'm off topic, but her words really hit a sore spot!
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My in-laws, who have known about my kidney disease for 25 years, were trying to plan a trip for June. My husband told them we couldn't make definite plans because I may be doing my dialysis training during that time. They told him he didn't know what could happen by then. Maybe I would get better. Really? I have also had several people ask me how long I will have to do dialysis? And my favorite, "are you on the list"? I understand that most people are unaware of CKD and dialysis, but I thought my family and friends were paying a little attention all these years.
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ive always been huge, since i was really young... so when i first started D i was told not to even consider a tx, because id never lose the weight (my dr said this) he said that hes been doing this for blah and blah years, and no one has ever lost the amount of weight i need to. Well, i did, i lost 100 lbs, and one day he says, why havent we tried for transplant? um DUH
Anyway, since ive always been so large, and im still rather large (and i gained back some of that btw, so im inactive for that, and some health issues, etc)
but i HATE how i look now. Im so used to my fat, that seeing loose skin drives me a little crazy...
My worry is that ill gain more weight if i get a tx, after losing whatever i need to get one... how crappy, would that mean that if i needed another, i couldnt get one, because im too fat again???
I understand why they want you at a certain weight, its healthier, and safer, but if they give me a drug that causes weight gain? hows that my fault??
They gave me some steroids not to long ago, short term, and ive gained back like 5 lbs... grrrrrr this yoyo crap is irritating!!
and i take other drugs that the side effects are weight gain... yay.
not to mention our 'diet' is mostly sugar and meat LOL
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The thing that bugs me about told to lose weight by doctors is that I've always been big. I've seen pictures of me from when I was 2 or 3, and I was a big kid then. They always say that I'd be healthier if I lost the weight, but I don't see how. Except for my kidneys and my eyesight, I have no other health problems, and I'm as active as I can be while on dialysis, since it sucks the energy right out of us. Being inactive on the list because of BMI just blows my mind completely. I'm also afraid of losing the weight, because even though my bones aren't thick, they're spread out, especially my rib cage. It's huge. I'd look like a fat skeleton.
I had a long conversation with the renal social worker about this today
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It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it. When you look in the mirror and don't recognize yourself, it's really offputting.
Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues. Most people have had medical issues. Why shouldn't everyone just be grateful to be alive? Grateful that we haven't all been eaten by bears or died of plague or starvation or small pox? The modern world has vanquished many killers, I don't think we are obligated to be any more grateful than anyone else who has had a vaccine or lived in a house with clean, running water.
This is the sort of thing that makes me furious. This is why I go nuclear on anyone who wants to lecture people on steroids, or off for that matter, on just how simple it is to lose weight with diet and exercise. That is some evil quackery there. People actually do have different metabolisms and are meant to be at different weights, but a few doctors pulled some random numbers out of their.... let's say hat.... and voila, license to shame. I wouldn't ever ask a doctor how to lose weight, because they haven't a clue. (*warning* about to repeat boring backstory for the upteenth time) I was abused horribly over my weight as a kid - driving me to severe anorexia, destroying my relationship with my parents who still cannot own up to what they put me through - over what was entirely a cosmetic issue. I was already on a 1000 calorie per day diet, not one "adult" had the sense to say "Just what exactly do you suggest, doctor? That she stop eating entirely until you find her aesthetically pleasing?" (that's ultimately what I did do and I am surprised I did not accidentally kill myself). It is lucky for the world's male medical workers that I do not have daughters because if just one of them made a remark about her appearance, I would demand to know why the hell he's commenting on the attractiveness of my kid's body. Creepy, isn't it? Yes, it is. I've experienced it.
WIK, if I understand your acquaintance's comment, she was implying that your appearance shouldn't matter to you because you are still alive? That's a new twist on "not getting it" as I think it's more common to downplay other people's medical issues, but no less aggravating. Or was she saying that you won't stop gaining weight until you die? Sorry, don't mean to be so thick.
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As tiring as it is to repeat myself all the time, if someone asks me a dumb question, I try my best to politely and enthusiastically educate them - usually more than they asked for - and I don't hold back on the language. :rofl;
My hope is that if they actually understand how incredibly crappy dialysis and kidney failure are, they'll feel motivated (or, maybe, just obligated) to step up and be tested to be a donor. Because otherwise I still have 3 more years of this crap.
If course, it's impossible to really show them what it's like, and they have lives of their own to worry about, so all I get is, "Man, I don't even know my blood type."
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WishIKnew, I didn't mean to offend you in any way with what I said. I would have taken a comment like that as a "could be worse" statement, and probably agreed or dismissed it. I think that I may have a different outlook when it comes to appearance. I'm very happy in my skin, which covers all 220lbs of me. I had to desensitize myself to comments about my appearance, made by just about anybody, when I started growing facial hair in my late teens- early 20s. I do feel your pain, though. Trying to lose weight while on steroids or even after you've been weened off them is a royal pain in the, as Cariad said, hat. *L*
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You don't look sick, are you sure you're sick?
Have you seen a doctor?
Ron White said it best.
You can't fix stupid! :Kit n Stik;
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WishIKnew, I didn't mean to offend you in any way with what I said. I would have taken a comment like that as a "could be worse" statement, and probably agreed or dismissed it. I think that I may have a different outlook when it comes to appearance. I'm very happy in my skin, which covers all 220lbs of me. I had to desensitize myself to comments about my appearance, made by just about anybody, when I started growing facial hair in my late teens- early 20s. I do feel your pain, though. Trying to lose weight while on steroids or even after you've been weened off them is a royal pain in the, as Cariad said, hat. *L*
:rofl; :rofl; :rofl;
A pain in the hat!!! Yes!
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It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it. When you look in the mirror and don't recognize yourself, it's really offputting.
Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues.
I just want to make it clear that I do not think that we should just be grateful to be alive and off dialysis, rather, I was being sarcastic about how OTHER people seem to think this way.
I didn't get the impression that WIK's docs were making her weight a medical issue. In fact, they seemed to be entirely unconcerned and spectacularly unhelpful.
I'm sorry if I've gotten the wrong end of the stick, but I thought it was WIK herself who is very unhappy with her weight, not her doctors. If her weight is making HER unhappy, then that unhappiness shouldn't be dismissed by her medical team.
I dunno...what does one do? Just get over it? Just accept that this is all part of being a tx patient? I really don't know.
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You got it right MM, my doctors are "entirely unconcerned and spectacularly unhelpful." (LOVE how you phrased that!) and I am beside myself! Thanks for understanding. I can't seem to just get over it and I won't accept being this heavy. So I will continue to seek.....
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Please let us know if you are given any helpful advice. :thx;
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Please let us know if you are given any helpful advice. :thx;
like THAT'S gonna happen...
hmm.. maybe I DO show my contempt for doctors a little too openly......
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Please let us know if you are given any helpful advice. :thx;
like THAT'S gonna happen...
hmm.. maybe I DO show my contempt for doctors a little too openly......
:rofl;
truth!
And here is my most recent ignorant thing.....
Idk perhaps i was being sensitive?
the bf says to me, You have to put yourself In my shoes, Jennifer......................
scuze me? Ok, i will, you work.... ok... and what you do is probably not that easy, ill give you that...you chose to stay up all damn night playing video games or watching tv, and falling asleep on the couch so you have back pain and such, instead of going to bed at a decent hour, and in a bed... i dont think i can have pity there...
And, you cant put yourself in my shoes? and you want me to put myself in yours? Please, trade me. PLEASE! Really???????????? Id much rather work than do dialysis!
Idk, telling me to put myself in his shoes really irked me. Like i said, perhaps i was being sensitive, but really? If you want to trade, by all means, ill work, you deal with the health problems.
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I guess the thing that really made my Son, Husband and Myself shake are heads in frustration is when my Son suffered a suedo anurysm that caused a major shut down and an emergency cath. had to goin so dialysis could start a.s.a.p. It was scary as hell, it took 3 tries before a somewhat successful dialysis ocurred. Gregg had gone through seven unsuccessful surgeries for a fistula and the eigth try was the winner ...he was out of his mind in pain from the anurysm and scared the newly developing fistula would blow out...he also was very wary of the cath. Well he came through but dialysis was never easy...went through 3 catheters and 2 very scary bouts of sepsis before fistula was ready...he does D 3x per week and is still learning to live with all the changes in his life...his function is 9% ....(BACK TO WHY WE SHAKE OUR HEADS) ...no matter how we tried to educate people Gregg received cards that said things like....."so glad you're finally on dialysis and on the road to recovery....or....."sure you'll be back to your old self once your dialysis is done"....and then....."it's about time they started giving you the medicine you need now those kidneys can heal." It's been one year since Gregg's diagnosis and we've given up trying to explain to people who seem to have misplaced their brains. Our circle of friends has gotten smaller "this is just too hard to deal with, we don't know what to say" so they say nothing or are absurd and fade away...the ones who get it are the ones we keep close...thanks for the vent ...Lisa
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When a child gets sick, people get weird.. I was 12 when I started dialysis for the first time. At that time, we were living an a century old, 3 bedroom house. We were renting this house. A month or so after I came home from the hospital, our landlady arrived with an eviction notice. She said she wanted to live in the house herself, which legally, she could do. She did live in the house, but only for a few months. My father figures that the reason she wanted us to leave was because I had gotten sick and she was afraid we wouldn't be able to pay the rent
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That misplacement of brains is a good word for it.
Had someone misplace their brain today!
To stupid to even share!
You just can't fix stupid; even with duct tape!
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It seems so obvious that we should be grateful just to be alive and off dialysis, but it is more complicated than that, isn't it. When you look in the mirror and don't recognize yourself, it's really offputting.
Yes, it is unsettling to not look the way you are accustomed to or just the way you want. It is worse when doctors try to twist it into a a medical issue when it isn't. No, I don't think we should be grateful to just be alive and settle for less than whatever brings us total happiness just because we've had medical issues.
I just want to make it clear that I do not think that we should just be grateful to be alive and off dialysis, rather, I was being sarcastic about how OTHER people seem to think this way.
I got that, MM! I was agreeing with you and being sarcastic right along with you. I can see how what I wrote was not clear on that point, though.
I didn't get the impression that WIK's docs were making her weight a medical issue. In fact, they seemed to be entirely unconcerned and spectacularly unhelpful.
Yes, I completely understand that, too, and maybe I was going too far off on a tangent with what I wrote. My experience is that it was twisted into a medical issue when it wasn't, in other words, the doctors used the only weapon that they had at their disposal to try to control my appearance. If they had said "Hey, we just think you're really unattractive for a young girl and it's sort of taking the shine off of being the ones behind your kidney transplant" even my star-struck parents would have, more than likely, said 'go straight to hell'. Say it's a medical issue and my parents were certainly not going to question that. My labs were always beautiful except during 2 brief creatinine spikes.... in 34 years.
It also makes my blood boil when I hear people being given the 'fat is unhealthy' spiel to keep them off the transplant list. For me they just used my appearance to shame me into starving myself, for others, they are literally using weight to withhold medical treatment.
I'm sorry if I've gotten the wrong end of the stick,
You haven't!
but I thought it was WIK herself who is very unhappy with her weight, not her doctors. If her weight is making HER unhappy, then that unhappiness shouldn't be dismissed by her medical team.
I dunno...what does one do? Just get over it? Just accept that this is all part of being a tx patient? I really don't know.
I don't want to come off as unsupportive, because I went through the effing wars with this exact issue as a child so I know it sucks more than most people could ever imagine, but WIK's doctors sound pretty cool to me. At least it would have helped me to have someone who understood that this was not my own doing, that this is entirely expected when one takes synthetic cortisol.
To your question, I think the following are your options:
1. Demand to get off prednisone. Studies have indicated that there is no benefit, and possibly much harm, from long-term steroid use post-transplant. Stress is a killer and it's a killer because of cortisol. You are flooding your system with this poison every day that you take it and in my opinion unless there is a sound medical reason for it (and with some tx patients there will be) no one should be on prednisone for years.
2. Cut sugars out of your diet - very difficult to do but it is the sugars that are triggering insulin, and that is supposedly what reacts with cortisol to produce more body fat. Low sodium may also help by reducing extra fluid retention, especially in your face. Exercise as much as possible.
3. Accept the change in appearance, recognise that it is *not* because you are some out-of-control pig and be ready to trounce any of these sanctimonous twits who come into your life to explain that they did not gain weight on prednisone, so therefore *you* must be overeating. Because we all know how identical we are when it comes to how drugs affect us. :sarcasm;
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Well, I have to jump in here and add my 2 cents, please realize that I am not hijacking your conversation but I feel to need to address the weight issue. I have always been overweight and in college tipped the scales at 320lbs. If you didn't accept me for who I was I usually responded by breaking furniture by sitting in it. Yeah, I could tell if someone really loved that old chair. Opps. Trust me I am not making light of your problem but unfortunately doctors are too quick to treat the illness and not the person with a hell or high water bedside manner.
:boxing; So I say, demand what you need from them. Do not be scared because they wear white coats. They are an employee of yours make sure that they know that and that you are the boss. Don't be afraid they will drop you because it sounds like that is what they are hoping for. It is no different than going to a diner and receiving poor service. Do you keep going back to the diner to that exact server that you left a penny for the last time you were there? Just my 2 cents!
You have the power to handle the situation any way you can to resolve it..
Cheers,
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That misplacement of brains is a good word for it.
Had someone misplace their brain today!
To stupid to even share!
You just can't fix stupid; even with duct tape!
But I thought duct tape could fix anything..... has Red Green been lying to me all these years??? *LMAO*
It also makes my blood boil when I hear people being given the 'fat is unhealthy' spiel to keep them off the transplant list. For me they just used my appearance to shame me into starving myself, for others, they are literally using weight to withhold medical treatment.
That's exactly what they're doing to me, and it's why I see them as "the enemy" as someone put it. I've always been big, and I know that 220lbs on a 5 foot and one quarter inch frame is not the healthiest way to be. I may not be tall, but I'm thick. My rib cage is huge. BMI does not factor in that part. Though I know I could stand to lose a few pounds, if I were to actually get to what's considered a healthy weight for my height on the BMI scale, I'd probably look like a skeleton, a fat skeleton at that. That might be hard to picture. *L* I just wish there was some other scale they could go by that was more accurate, or not go by a scale and all, and assess people on a case by case basis
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And here is my most recent ignorant thing.....
Idk perhaps i was being sensitive?
the bf says to me, You have to put yourself In my shoes, Jennifer......................
scuze me? Ok, i will, you work.... ok... and what you do is probably not that easy, ill give you that...you chose to stay up all damn night playing video games or watching tv, and falling asleep on the couch so you have back pain and such, instead of going to bed at a decent hour, and in a bed... i dont think i can have pity there...
And, you cant put yourself in my shoes? and you want me to put myself in yours? Please, trade me. PLEASE! Really???????????? Id much rather work than do dialysis!
Idk, telling me to put myself in his shoes really irked me. Like i said, perhaps i was being sensitive, but really? If you want to trade, by all means, ill work, you deal with the health problems.
GLM - You are NOT being "too sensitive". PJ is a Grade A, classless crass JERK! He should have a freaking clue after being with you for over a year, but because he lacks basic sensitivity and human empathy, he only thinks of his wimpy self and his own weak ass, which must be soft and mushy like baby food with how much he sits on it!!! The games this useless fugly rat-ass has played with you over the last several months has infuriated a LOT of us. It really doesn't matter what he does to try to "make up for it" now, because he's already lost too many points in my book. He's a lame ass and a poor excuse of a "man" - he simply is not one. The one and only good thing I can say about him is he has a job and he goes to it. But, that does not give him the excuse to be a jack off when he's off the clock and at home. He's lazy and good-for-nothing. Time to clean house and get rid of him - STAT!!!
KarenInWA
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Karen the diplomat... :P :clap;
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Karen the diplomat... :P :clap;
:thumbup; :thumbup; :thumbup;
And here is my most recent ignorant thing.....
Idk perhaps i was being sensitive?
the bf says to me, You have to put yourself In my shoes, Jennifer......................
scuze me? Ok, i will, you work.... ok... and what you do is probably not that easy, ill give you that...you chose to stay up all damn night playing video games or watching tv, and falling asleep on the couch so you have back pain and such, instead of going to bed at a decent hour, and in a bed... i dont think i can have pity there...
And, you cant put yourself in my shoes? and you want me to put myself in yours? Please, trade me. PLEASE! Really???????????? Id much rather work than do dialysis!
Idk, telling me to put myself in his shoes really irked me. Like i said, perhaps i was being sensitive, but really? If you want to trade, by all means, ill work, you deal with the health problems.
GLM - You are NOT being "too sensitive". PJ is a Grade A, classless crass JERK! He should have a freaking clue after being with you for over a year, but because he lacks basic sensitivity and human empathy, he only thinks of his wimpy self and his own weak ass, which must be soft and mushy like baby food with how much he sits on it!!! The games this useless fugly rat-ass has played with you over the last several months has infuriated a LOT of us. It really doesn't matter what he does to try to "make up for it" now, because he's already lost too many points in my book. He's a lame ass and a poor excuse of a "man" - he simply is not one. The one and only good thing I can say about him is he has a job and he goes to it. But, that does not give him the excuse to be a jack off when he's off the clock and at home. He's lazy and good-for-nothing. Time to clean house and get rid of him - STAT!!!
KarenInWA
AMEN! :2thumbsup;
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Don't hold back Karen - tell us what you really think!!!! :)
Yeah I agree with the gist of the post for sure.
The thing that is often lost in situations like this is perspective. I think all of us who, sadly, have some idea of the shyte you deal with due to kidney disease, dialysis and all that would call you a bit of a freakin hero for dealing with going to D constantly, enduring that, feeling so tired and drained from it (and the poor kidney function, low hgb etc) and then looking after your child as best you can and the second child in your life being the game playing bad back boy.
True he does a hard job - I think you once said he works at a waste treatment plant, which is ick for most people and that's great but i bet you anything if you weren't dealing with D and all that stuff you'd be working too in a job, earning money etc...
and what was his point anyway - put yourself in his shoes for what reason?? to "prove" how hard his life is??? yeah the obvious answer is "yeah buddy you come sit at D with needles in your arm for hours, unable to move, feeling drained and sick and then coming home to deal with you?!" yeah get in my shoes big guy!!!
back to the weight thing... like Karen I was always a skinny kid and had a high metabolism (ok Karen has girl bits something I don't... darn! lol) anyway I always knew based on my father that I would probably hit 40 or so and start to, er, fillout... well it took the tx to start that, and perhaps the weekly pints at the pub to "enhance" it.. but meh I am who I am.
When it comes to how I see others with weight issues I am less interested in how big (or small) someone is but how healthy they are. for example years ago I dated a lovely girl who was a larger size at the time and she was a bit self conscious of that but it didn't matter to me.. it was sitll her. Anyway she pulled her finger out and did a lot of training, gym, running etc and lost a lot of weight and well the shallow end of the poool started to notice how cute she was. Soon she was hit on all the time (we'd split up by that time-- a long story) but I did think yeah she LOOKS great but to me she was still the amazing sweet wonderful woman I first met and fell for. She's put on some since (and had a kid) and again worries about it, but she's still way more normal sized than she was all those years ago and even though we're well past the rship stage, just good friends now, I do remind her constantly that it doesn't matter her size or whatever.. she's still got the same core ingredients of an awesome lady she always had.. and that is what is important I think.
Of course when it comes to health issues such as tx evaluation and stuff.... docs aren't being shallow in making comments about weight.. there are real health issues involved for some with extreme weight issues. I get that. strain on the heart fr one, various other things.. even ability to recover from serious surgery etc They want the best outcomes for all patients - donors, recipients etc so I can understand pressure from that point of view. I also understand that there are some people who no matter what stay where they are - large, skinny, whatever. Sometimes it literally is a case of being "big boned"
I'm sorry to those that have felt victimised or bullied because of weight issues. sometimes it's really not fair hen there's nothing you can do about it, or all you do try comes up to nothing.... sure some people, like that girl long ago I dated, definitely could lose a lot of weight... but I get that it's not that simple or easy for everyone (and it wasn't easy for her.. she worked out like crazy to do it... and I admired she had a goal and worked so hard to get there! but it required commitment and effort over a period of, well, years...)
Maybe that's the core - I mean that ignorant comments of these sorts is because it's often easy to see someone and make a quick judgement without really knowing all the facts, or history, or anything.. and we ALL do it (yes me too) from time to time. Often it's little things that are harmless, but other times when you act on those judgement calls - like making ignorant comments - can be very hurtful to some and insulting or just obviously stupid without context.
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i miss work! i used to work TWO jobs(one full time, one part time.. but still) , and go to college (two classes..) and take care of jareth by myself.. so ive been in his shoes.
weight is such a pain, i noticed, for me, if i try, i gain, if i dont try i lose... go figure? i think drs are a little too harsh about it sometimes... i understand that it isnt "healthy" to be obese, but instead of just simply saying dude your too fat, they should help come up with solutions ...
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My impression of every dietician I've talked to/heard in my 12+ years of doing dialysis (especially when talking to a brand new patient):
Dietician (enthusiastically): Do you like <fill-in-the-blank>?
Patient: Yes!
Dietician (serious): You can't have that.
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"A week from Tuesday" is my new answer to the stupid question I get all the time. Just this morning my dentist asked me, "So how long will you new kidney last?" My answer, with a straight face, "A week from Tuesday." What else can I saw to such a dumb question? Grrr.
And today I got to hear all about how sometimes the side effects of medications can be worse than the original problem. "I would never take a suitcase of meds. If I ever need more than a medication or two, I would just refuse because the side effects would case so many other problems." the dentist tech said. "So", I want to ask, "I should refuse to take the meds that keep my kidney in me but cause other problems?"
I'm cranky today, but people need to just shut up! They talk about things they know nothing about!
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"A week from Tuesday" is my new answer to the stupid question I get all the time. Just this morning my dentist asked me, "So how long will you new kidney last?" My answer, with a straight face, "A week from Tuesday." What else can I saw to such a dumb question? Grrr.
:rofl; :rofl; :rofl; :rofl; :clap; :clap; :clap; :2thumbsup;
can i borrow this?!?! roflmao
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My neighbor thinks that anything can be remedied by the right combination of yoga, fresh juice and optimism. I told him that kidneys don't come back once you get to ESRD, but he argued that *I* was wrong. I am so tired of explaining fluid restrictions to everybody and I really wish people could quit telling me that I just need more water or juice and I'll be all better. Apparently I am just not thinking positively enough. I was just dumbfounded. I might never speak to him again.
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Apparently I am just not thinking positively enough.
Ah, but you are now positive he's an idiot. Tell him to give you his kidney so you can start fresh and follow all his good advice.
"A week from Tuesday" is my new answer to the stupid question I get all the time. Just this morning my dentist asked me, "So how long will you new kidney last?" My answer, with a straight face, "A week from Tuesday." What else can I saw to such a dumb question? Grrr.
:rofl; :rofl; :rofl; :rofl; :clap; :clap; :clap; :2thumbsup;
can i borrow this?!?! roflmao
I, too, think I may need to use this. My apologies if I do so with providing the proper footnotes to attribute it to you, dear, but that is just too good of an answer to pass up! So far, I've been using "Sometime between tomorrow and ten years," which is just a wee bit too truthful to shut them up....
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I think that is the perfect answer for the "how long will the kidney last/when are you getting a kidney" question. I can see the conversation now.
Well meaning (hopefully) but ignorant person: "So, when are you going to get a kidney?"
Me (in total deadpan): "A week from Tuesday."
WMBIP (enthusiastically): "Really?"
Me: "Probably not, no."
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:rofl;
LOVE it!
I am so tired of the fact that people are so surprised that I haven't got a kidney yet! Even though the last time we spoke I told them it was a 10 year wait. :stressed;
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A Sample of Ignorance
The Date: MARCH 2012
The Thesis: WHO WANTS A CHALLENGE?! TRY IT OUT
Life can suck, and what sucks can be relative to everyone, but this is my life in one week. Do you want to try it? Cool. If you're not able to complete this entirely, you'll see that it is a struggle. You will be taking next week to do this. I want you to find a chair that is somewhat comfy, not exactly nap worthy. You will have guidelines to follow, and if you don't, you haven't gotten the experience to protest my behavior, because sometimes it's not all about the sitting.
Now, assuming all of you were now suddenly born with Chronic Renal Failure, and throughout your childhood life, your kidneys have proceeded to fail more and more every year. You are now 14, and have been placed on Dialysis until you receive a kidney transplant. Since this is make-believe, you are not able to get the experience of appointments, weight gains between treatments, and migraines and muscle cramps.
Ok, ready for the actual challenge? You are to find the chair and place it in-front of a TV. With this TV you are allowed NOTHING obtained through satellite. There is a game console there, but you are unable to use online play, and any game you play (unless you bring it in) must be more appropriate than "M" rated games. That means "E" and "T" are your only options. Already hard? Good.
Now that we have your limited entertainment set up, you are to set your nutritional guidelines. You are allowed 1 8oz glass of water OR 1 8oz can of Sprite. You can only get Goldfish, Lorna Doones or Rice Krispie treats (max of 2).
Finally, the set up. You must sit in the chair for 4 complete hours on Monday, Wednesday and Friday of next week (No choosing a day, you must, if you wish to prove me wrong, complete it everyday). You can have one blanket.
Are you still interested in proving me wrong? Are you ready to complete the challenge?! Alright! Add Monday AFTER SCHOOL to your agenda's. You must reserve 5 HOURS total for this challenge. M,W and F. If you do not follow ONE guideline, you are disqualified and have no right to prove me wrong. If you STILL feel like I'm wrong, then now you must do this…
Consider this EVERY WEEK of EVERY MONTH of EVERY YEAR of EVERY DECADE of EVERY CENTURY until you get transplanted.
Ok I really dont like Hemo Dialysis no offense
- From a PD patient
Just one problem. Non of Us can get any form of Dialysis in our normal forms. we'd die. Simple as that. The sudden removal of bacteria in the body would lead to an uncontrolled growth of white blood cells, eating away at normal tissue. Oh. And the whole soda thing, no offense. People have it alot worse. Your complaining about material possessions. "The things we own, own us." "Only when we're lost everything are we free to do anything." It's the attitude that I believe you need to have more of. No offense. But you complain about things that can be changed. The lifestyle thing can be different. Friends can come and go. My main point though. You can fix alot of things. You complain about your grades falling from having to go to treatment. Do your hw under treatement, and in the car. Lifestyle wise, think of it as a diet. Many refuse sodas food and such
- Matt M.
I respond with: "Matt, you don't go through it so you can't speak for yourself. I can't do my homework as well on treatment. What don't you get about blood...pulled out...cycled...cleaned...returned? It sums up to cRAMPS...and MIGRAINES."
You get your blood cycled in the car?
-Matt M.
Hayley: I took medicine to put my from 4-8 to solve heart problems. I was a vegetarian to improve my health for 6 months last year. I understand what he is going through, but the point I'm trying to make is, we get it. We know Weston has Kidney complications. But when you make a status expecting pity for it, it just makes it totally wrong.
- Matthew thinking his "heart problem" (not severe in anyway) is comparable. He is attacking a fellow Dialysis patient here.
If you expected understanding, then you'd post the link to the national kidney foundations website.
- Why post a link to a person writing an article who DOESN'T HAVE RENAL FAILURE? Why not get from experience?
Weston listen the phrase walk a mile in another mans shoes was not meant to be taken literally I don't understand what its like to be in constant physical pain and most likely boredom but I do understand that not everybody was placed with this problem I think that asking everyone to do so is like saying I was once on a sinking ship go try it dont take this the wrong way I care about ya man and I dont necessarily feel sorry for you as much as I wish I could do something about it but listen this challenge (while this may have not been your intent) looks like a pity me sort of thing I think if you just do things in a more er.... optimistic manner things might actually look up for you this whole thing here is not good for your health physichally or mentally. and further more you really shouldn't simply bring up the fact that you could die so much it makes things seem so surreal because you say its gonna happen at any moment but it hasnt and I dont honestly want to spend my every waking moment thinking oh my very good friend weston could be dead that would be too much and having people take this challenge proves everything I have just said I dont take matts or ANYONES sides ok I am neutral ok?
- The bane of my existence, the sultan of my School, Jude S. He is an ignorant little twat.
well if the time arises for me to try it I will and it may suck but alot of things suck and there are people who have it worse that don't go around parading their bringing up of dialysis take it from someone who's been in the position of watching a friend slowly die they never brought it up because we wanted to live in the moment even talk about what we were gonna do when he got better and you know what he did after suffering with cancer for 3 whole freakin years of kemo! and attempting it won't prove anything ok if you want to make a point do something bigger broaden your horizons past facebook!
- Hypocrites! You say "oh, someone has it worse than you", but yet when someone (me) who has it worse than YOU, the rules don't apply to the narcissistic prick!
The reason I refused was because you acted like "try it or you're an ass" so yes I will formally refuse and if you have response tell me about your troubles to my face not on facebook please so any other combacks I will formally refuse to acknowledge
- Did my challenge ever imply a "try it or you're an ass" implication?
No you act like a little bitch at times when people refuse to do something like try this challange. And ur only tagging them in ur comments to have them back u up. Ur right I'm not on chemo and shit but ik when to stop u kinda don't. NOT EVERYONE WILL UNDERSTAND THAT'S WHAT UR NOT GETTING!! Just becuz u wrote a statuse and tagged ppl doesn't mean they will always understand
-Jenni F, daughter of a Russian serial killer, or so she says? :/
I've had a college reading level since the 3rd grade so ya I can p*cking read
-Jude, I have a hard time believing that when you write like a chimpanzee on heroin.
Ok fine and your medical life is your life because you make t that way look around you and look at the good things you have1) you aren't dead 2) you're immediate death is not set in stone
- Jude; Had I know that you die within 2-4 weeks of quitting Dialysis, I would've thrown that shit right in his face.
3) you have friends
-Jude added this in a separate comment. Isn't it ironic and rather hilarious? I HAVE FRIENDS? What kind of friends? Friends from Hell itself?
weston I can now see you are unstable you took everything we just said and turned it into a joke for your "real" friends I guess that makes the rest of us your filler
Real friends would be friends defending my honor with comments such as:
You guys are all ridiculous. Your stupidity is on a level I didn't even know was possible. Cut weston some slack, he doesn't want to hear your hurtful opinion. Mkay? Do everyone a favor and shut up and be a good friend not tear him down and make him feel worse. I feel bad for you. You have all these "friends" that don't even support you and stand by your side. Wish I was there to be with you every step of the way. Stay strong boo.
- My best friend, Paige Sp. Moved away when we were 11. Still keep in touch :)
Thanks weston your a shitty friend right now and its the truth.
-Jenni F once again (I clarify her last initial because my sister's name is Jenni)
I've met people in worse situations who wouldn't pull this shit
-Jude; Oh, ok, but those people beg for Facebook likes in an effort to "cure" their disease, and then they get Schools and what not to basically raise money and GIVE them that money. I simply wanted friends to shut the hell up abut their petty problems.
Teia you can shut the p*ck up
-Jude the Narcissistic Intolerable Prick goes too far when he insults my dialysis friend, even though she made this list of ignorant comments.
Weston u stooped p*cking low. Your a little bitch who can't handle what we are trying to explain. Unfriend me. Now.
- Someone's lazy! (Jenni F)
I dont hate you weston I just dont want you to continue in this self destructive pattern you simply let things flow as they should naturally
-WHAT IN GOD'S ALL HAILING NAME DO YOU KNOW ABOUT 'SELF DESTRUCTIVE' WHEN SPEAKING ABOUT DIALYSIS? Oh right, his grandmother's on Dialysis and he's visited her while she was on Dialysis once for like 10 minutes. That's solid argument grounds.
Well weston if you are gonna be like that then I shall bid you a formal ad'ieu
-So fancy, you can use French.
If you wish to see all comments, I'm more than willing to compile images of this tirade of ignorance.
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I GOT TO ADD THIS ONE!
You live a life. Isn't that enough for you. Most of us have some form of medicine to keep us alive. If you don't feel grateful, then stop treatment. Watch what happens.
- Said...TO ME...Regarding me frustrated about Dialysis. This is from Matt M.
HE. HAS. NO. SIGNIFICANT. HEALTH. PROBLEMS.
Newsflash, Dialysis keeps you alive, dumbass. :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :rofl; :clap; :clap; :clap; :clap; :clap; :clap; :clap; :clap;
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You can't expect your friends to understand it all. My friends didn't get it when I was your age, nor did most of my classmates and teachers, but the ones who cared, tried. My friends now don't get it all, but they try. It's the ones who try that you need to keep close. They are the ones who will stick by you. Screw the rest of them.
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WOW
I know that kids (thats what i assume these people who commented are) are really heartless and lost in their own worlds, but daaaaaaaaaaamn. While I think a few of those were trying to tell you to look at the bright sides(maybe going about it the wrong way though), most were just being jerks.
First thing I really want to point out, your challenge is actually the minimal of what we do deal with sometimes. No one can truly understand what we deal with, because its soo much, and explaining it really doesnt give the real feelings we have. even doing what you suggested is really only a small portion of what we deal with.
Even some adults cant possibly understand, but kids? it would be impossible, most of them have had maybe a broken bone to compare to... which to them, may have been the end of the world. ( you know, they have a splinter and its killing them, but we have a giant log... )
I am an adult, who started D when I was 23, and I cant even begin to imagine what it would be like to be a child on dialysis!!
I am sorry that some people said some really rude things to you. I learned a while ago, not to expect anyone to truly understand what I'm dealing with, because even the people in my life who see me on a regular basis don't truly understand.
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But I thought duct tape could fix anything.....
I have seen a dialysis machine fixed with duct tape (used to keep the door on the blood pump closed).
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Wow! Some people don't even try to get it!
I actually had someone finally understand a little bit of how I felt after D when I was hospitalized for pneumonia.
I had just started training for HomeD and the first day, I found out my temp was 103. I didn't even know it because that was how I always felt after going to the clinic!
Anyway, a friend said to my husband, "Wow! She must really feel bad al the time if she didn't even know she was sick!"
This from the same person who knew someone (years ago) who was on dialysis and THEY never had any trouble!
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Someone told me today that "you are lucky to have been on dialysis so many years" . Hmmm never thought of myself as lucky... I think if you can live your life and HAVE A CARREER and then go on dialysis at age 90 you are lucky.
I guess my sister who died of cancer at 44 would have rather had ESRD. You get to live but ..... Okay, I'm just in a whinny mood.
:Kit n Stik;
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I am sorry to say that I must agree with many of the "friends". While your challenge is great in concept (and similar to one I've proposed that every person who works in dialysis go through once every six months), this challenge reads more as a "pity me" than a "understand and empathize with my situation" post. Some of your hardships are pretty minor (not having satellite and only having access to "E" and "T" rated games, let alone having access to "only" one game console at all, for example. At the unit I started at 12+ years ago, there was one tv for every three patients to share, and only half of those tv's actually worked [that unit has thankfully been shut down and rebuilt since then]). No soda, a limited selection of snacks, and only one blanket provided? Again, at none of the units I have been at in my 12+ years of doing this have provided any of these (other than water). If you want these things, you bring them yourself. I am not saying my situation is worse than yours, just pointing out that you may have it better than you realize. These are more minor annoyances than anything else and would do little to garner sympathy or empathy.
That being said, I do understand some of your issues, like not being able to do homework while on dialysis. I would much rather read than watch tv during treatment but it causes my blood pressure to drop quickly if I do so. Same thing happens if I have an extended conversation, especially in the last hour of my treatment. Nurses, doctors, PA's, dieticians, techs, social workers...they all want to discuss important matters or even "just know how things are going" while I'm doing my best just trying not to pass out. I often use the analogy of how they would feel, after coming to after surgery, someone hovered over them and wanted to discuss their taxes.
Anyway, kids being kids and communication being what the internet has turned it into (tact is now a four-letter word online according to this 40-year old fogey), I see comments made on both side which are immature, rude, and uncalled for. Some of your friends did seem to honestly try to show (whether doing so successfully or unsuccessfully) empathy, and your response was to be snarky and even insulting in some cases. Again, their response to your curtness wasn't any better, but still...
~Jason
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I am sorry to say that I must agree with many of the "friends". While your challenge is great in concept (and similar to one I've proposed that every person who works in dialysis go through once every six months), this challenge reads more as a "pity me" than a "understand and empathize with my situation" post. Some of your hardships are pretty minor (not having satellite and only having access to "E" and "T" rated games, let alone having access to "only" one game console at all, for example. At the unit I started at 12+ years ago, there was one tv for every three patients to share, and only half of those tv's actually worked [that unit has thankfully been shut down and rebuilt since then]). No soda, a limited selection of snacks, and only one blanket provided? Again, at none of the units I have been at in my 12+ years of doing this have provided any of these (other than water). If you want these things, you bring them yourself. I am not saying my situation is worse than yours, just pointing out that you may have it better than you realize. These are more minor annoyances than anything else and would do little to garner sympathy or empathy.
That being said, I do understand some of your issues, like not being able to do homework while on dialysis. I would much rather read than watch tv during treatment but it causes my blood pressure to drop quickly if I do so. Same thing happens if I have an extended conversation, especially in the last hour of my treatment. Nurses, doctors, PA's, dieticians, techs, social workers...they all want to discuss important matters or even "just know how things are going" while I'm doing my best just trying not to pass out. I often use the analogy of how they would feel, after coming to after surgery, someone hovered over them and wanted to discuss their taxes.
Anyway, kids being kids and communication being what the internet has turned it into (tact is now a four-letter word online according to this 40-year old fogey), I see comments made on both side which are immature, rude, and uncalled for. Some of your friends did seem to honestly try to show (whether doing so successfully or unsuccessfully) empathy, and your response was to be snarky and even insulting in some cases. Again, their response to your curtness wasn't any better, but still...
~Jason
I'm disappointed when I see Renal Patients agreeing with ignorant assholes.
Remember, this was UNIT SPECIFIC.
That's how my unit operated, so that's what rules they had to follow. You also sound just like them in that it seemed as a "pity me" activity.
Again...Disappointed.
:thumbdown;
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Okay, I have a funny one because it was my dad who did and he knows better. One day after one of my transplants had failed I was spending the day with my dad. It had been long enough that my output had stopped and my dad knew this. We decided we were gonna take a drive up to Mount Rainier which isn't far from where he lived. As we were getting ready to go out the door my dad looks at me and says, "Do you have to use the bathroom?" He meant did I need to pee? I looked at him and I said, "That was STUPID question!" And looked confused for a second and then said, "Oh yeah."
I grew up looking at that mountain every single day!
My other funny story doesn't have to do with my health but my car breaking down and I don't know if I should post that one here or not. But it wasn't funny at the time.
I already posted my not funny ones in this thread I think.
One that gets me sometimes though, is when people look at me funny because I park in the disable parking spots and then say something like, you don't look disable or you don't like you're sick!" As if you can really tell that way! I usually just walk past them without saying anything. My legs never regained their full muscle strength after my small intestine ruptured in Dec. 2002. So, I can't walk very far.
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Doctor at dialysis access center, "You have kidney problems?"
Me: "yes...."
Dr.: "What stage are you?"
Me: "stage 5"
Dr.: *rambles on about finding big juicy veins and walks away* *comes back and asks, "you're stage 5?!"
You would think that doctors at a dialysis access center would have more tact than that.
Sometimes it's just frustrating. You can't understand this disease until you have it. Even people who genuinely care and try to understand can never truly get it. I work 10+ hour days. To be able to do that I basically come home every night and go straight to bed. I rarely miss work, and when I do it's because I'm at a doctors. Every single day I feel sick and tired. Every. Single. Day. It frustrates me to no end when people leave work early because "my stomach is upset" or call out because they stayed up late the night before. When this happens it means I have to work even harder/longer hours to get the job done. If they only knew how much I kill myself everyday just to be there and to seem normal. I want to tell them to suck it up so bad lol. I guess I am jealous that they get to see "pain" through their rose colored glasses while mine were forcibly removed. :(
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I agree it is hard to watch whiny people who are basically healthy complain . I admire you for working full time plus with kidney disease. It takes courage and WILLPOWER to go in every day while feeling rotten and do your job. To me , heros arent the people who find themselves in life or death situations and act appropriatly and save a life. Thats easy , doing it ONCE. Real heros are the people like you(and my wife) who live with medical issues or other major issues and quietly get up , go to work and do their job , EVERY DAY. That is much harder than a one shot life saving act. YOUARE A HERO.
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Sometimes it's just frustrating. You can't understand this disease until you have it. Even people who genuinely care and try to understand can never truly get it. I work 10+ hour days. To be able to do that I basically come home every night and go straight to bed. I rarely miss work, and when I do it's because I'm at a doctors. Every single day I feel sick and tired. Every. Single. Day.
I completely understand where you are coming from concerning being sick and tired every day at work. Every day and not missing work too! A big kudos to you though. :bow; Also, I become frustrated with those who “skip work” when they’ve stayed out too late. Being young, co-workers in the past automatically thought this was also the reason I looked physically sick. “You didn’t sleep much last night?” “Hard night out?” Working in government at the time with 2 hour lunch meetings and able to pick our own office hours, I felt I could hide the tiredness with being annoyingly chipper and lots of concealer. It didn’t work. ::) It didn’t work especially on the days of meltdown nausea. Finally, after all the comments of “No, I’ve been sleeping well! I’ve been going to sleep at 9 PM!”, I decided to just spill the beans. Once I said that I had kidney failure, they stopped with the ignorant comments but kept on with the “You look tired.” statements.
The issue has followed me back into the world of academia. We have many different guest lecturers coming in. During a lecture by a very respected economist, I kept yawning. He noticed every yawn. I was interested in what he had to say but I just wasn’t feeling very good that day. When he picked up his papers to leave (me, sitting there in the front row like the geek I am), he said to me very abruptly, “Sorry for wasting your time.” I wanted to chase him down the hall yelling “You don’t understanddd!” :stressed;
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I have been on dialysis (for the second time) since October 2011 with NxStage.... Since the end of February of this year, I've been doing Nocturnal NxStage....
Last week I received a questionaire from my *INSURANCE COMPANY* asking if the treatment on 5/1/2013 with the Hortense and Louis Rubin Dialysis Center was due to an accident or injury!
I am a combination of laughing and pissed. They'll be getting a call in a few minutes to "sort it out". :urcrazy;
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I'm disappointed when I see Renal Patients agreeing with ignorant assholes.
Even a broken clock is right twice a day.
I agree with ignorant assholes all the time, if they are right.
I also pointed out that I didn't agree with all, nor did I agree in the method with which they expressed themselves, plus I agree with parts of your post. It's not an all-or-nothing world. I'm not "with you or against" you or them, merely sharing my observations of the post that you put forth for public consumption. I have no stake in your game.
Remember, this was UNIT SPECIFIC.
That's how my unit operated, so that's what rules they had to follow.
Well, I'd love to be at your unit, then. The perks sound pretty good (granted, you never state anything about the important thing...you know, the actual quality of care). The majority of your challenge (not all, but a good part of it) is basically just asking your peers to do without some of the modern comforts that they normally have. Actually, you're not even asking that. You are asking them to have only a limited amount of options of modern comforts/entertainment.
You also sound just like them in that it seemed as a "pity me" activity.
And not only have I been in your position (which seemed to be your constant disqualifier for those who disagreed with your stance) and feel that way, but it seems I have 25-plus years of life experience that you don't to support my observation. By your formula, I could use the argument that your position is "ignorant" and you are being an "asshole", even though that's not how I actually feel. I feel you are a teenager, angry at your situation (which is quite understandable), and transposing that anger onto others, whether they deserve it or not (and make no mistake, I do believe a few of those posters deserved it, just not all).
Again...Disappointed.
:thumbdown;
"We must accept finite disappointment, but never lose infinite hope." ~Martin Luther King, Jr.
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ignorant assholes
The term for such a person is "ignoranus"
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For reasons which I'm not completely understanding, I still haven't managed to get my appointment to get my skin graft so I can start dialysis treatment. So, I'm "functioning" at 11%. My boyfriend (who is a great guy) works 5 overnights a week. He doesn't get that our two forms of "I'm tired" are completely different and legit. Or rather, he didn't get. He's realizing as I have fewer days of feeling like myself that my complaints have more merit than his (we've only been dating a few months, though we've known each other over a decade).
I had a former co-worker inform me that kidneys aren't that important (Yes. Yes there were *facepalms* involved following that conversation).
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:banghead;
Hopeless, and you can't 'educate' everybody all the time either.
Take care,Cas
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Calamity, you should of told her to give up both of hers and see how well she function without them. Idiot!!! ::)
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I am dializing in cernter. Out head nurse who has had her position for almost 20 years now was harping on me abnout my weight gain for the upteenth time and about my need to restrict my fluid intake... I calmly said to her, you seem to forget that I have Gastroperisis (sp?) ... Her reply... So, you have gastroperisis, what's that have to do with anything?
If anyone should know and understand it should be her! I had to patiently explain to her what it was and how it effects my weight. Than I had to spend the next five minutes arguing with her about how much fluids to remove from me.
That has to take the prize for ignorant things I have been told by someone who should KNOW.
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I was asked the following the question from a weightlifter today. Naturally, as a whole, they are not the epitome of intelligence but I was shocked.
“If a baby or a kid donated a kidney to you, will they grow back a replacement kidney?”
:banghead;
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Assuming makes an ass out you and me.
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Calamity, you should of told her to give up both of hers and see how well she function without them. Idiot!!! ::)
I was considering it. But, based on really effed up things she said to the kids in our after school program made me realize it made more sense for me to offer up my brain to her... :banghead;
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
That takes the cake!
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
:rofl;
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
I'm not even on the list, and people ask me that question
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
I'm not even on the list, and people ask me that question
That's sad. Utterly.
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When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries. You need it, you get it.
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When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries. You need it, you get it.
When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries. You need it, you get it.
:lol; :lol; :lol; :lol; :lol; :lol; :lol;
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When you talk to your average person about kidney transplants, their attitude generally suggests that they think it's like shopping for groceries. You need it, you get it.
Or "Wait. Haven't you already had a transplant? Why do you need another one?"
I like living. Don't you? Yeah, that's what I thought."
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I'm on the transplant list, waiting for a deceased donor. Several people have asked me when my surgery is scheduled. Let me look into my crystal ball....
Maybe they think it's a DIY thing! Pick the donor you want to kill!
:lol; :rofl; :lol; :rofl;
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BEK Transplant used to sell kidneys online for $70K installed, service performed in Shanghai.
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Shanghai? That donor was probably recently deceased. From some "mysterious accident."
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Shanghai? That donor was probably recently deceased. From some "mysterious accident."
Nope. The web site was quite open about the fact that organs came from "executed prisoners". The website has been shut down since China cracked down on overt organ trafficking. It looked legit - had a price list (discount for buying a liver and kidney at the same time), $5K surcharge for Type O, listed the immunosuppresents used and their source country; and had bios on the surgeons.
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A good friend of mine who knows I have kidney failure and require dialysis asked me how my kidneys were going. Well... err... they're cactus, hence the term kidney failure and need for dialysis. She's a lovely girl, but not the sharpest tool in the shed, bless her.
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"...they're cactus." :rofl;
Mine are prunes.
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Assuming makes an ass out you and me.
EDITED: Fixed quote tag error- kitkatz, Moderator
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Assuming makes an ass out you and me.
EDITED: Fixed quote tag error- kitkatz, Moderator
I also love when you tell them something and they say, "Are you sure?" I had this when I was in the ER. They were asking me about dialysis and I told them I do home hemo. They said, "You mean PD." I said, "No, I do home hemo." I pulled up my sleeve and showed them my fistula, then pulled up my shirt and showed them I don't have a tube. The ER dr's response, "Well I didn't think patients were allowed to do that!" It was all I could do to keep a straight face!
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My youngest son has decided that a product called, I don't know, something with a Q in it can cure my kidney disease. Oh, of course it can my son!!! He sends me all these testimonials which in opinion are hogwash. I am seriously thinking of murdering him.
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LOL @ Jean. Sounds like it would be justifiable homicide!
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When I was a kid, 12-13 or so, my great aunt told me that my kidneys failed because I drank too much dark pop in my (then) short life span..
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Ignorant and creepy thing said today...
After my grandfather had dialysis, he really wanted some kvass. We know it’s not good for him but at 87, why not? I ran into three guys loafing outside the shop with whom I’m acquainted. (One of them studied until he got thrown in the slammer…) They emphatically called out my nickname so I couldn’t ignore them…
Guy that did time in the clink: How are you feeling?
Me: Not great, I’m starting dialysis.
Guy: The world is not fair, my darling. I want you to have a kidney.
Me: Haha, yeah, it would be great if mine worked again.
Guy: No! Really! I want YOU to have a kidney!
Me: *awkward chuckle* Are you offering to be a donor?
Guy: Donate? No! You know you can buy one! *happy flailing at this point*
For hours today, I keep asking myself if he asked how I felt if he really cared or just looking for business. Not going to waste anymore time worrying and I guess that's why I was going round to the shops. I always wondered if I sewed in all those chicken kidneys in a package at the packaged meats, would it work? Now I know... silly me. ::)
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OMG, if I had a dollar for every time I got told BY A MEDICAL PROFESSIONAL that home hemo means PD, I would be rolling in dough.
But on the good side, once I politely educated the uninformed person that no, I really mean home HEMO and yes, I stick 15 gauge needles in my arm every day (they don't have to know that they are blunts >:D) I always got mad respect (as the young'uns say). Most medical professionals I met always seemed to have a needle phobia of some sort. They were more than happy to stick someone else but they always admitted that they could never stick themselves.
I also love when you tell them something and they say, "Are you sure?" I had this when I was in the ER. They were asking me about dialysis and I told them I do home hemo. They said, "You mean PD." I said, "No, I do home hemo." I pulled up my sleeve and showed them my fistula, then pulled up my shirt and showed them I don't have a tube. The ER dr's response, "Well I didn't think patients were allowed to do that!" It was all I could do to keep a straight face!
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My youngest son has decided that a product called, I don't know, something with a Q in it can cure my kidney disease. Oh, of course it can my son!!! He sends me all these testimonials which in opinion are hogwash. I am seriously thinking of murdering him.
Tell him you appreciate it, but he isn't a doctor (unless he is, in which case there are other problems). If he ever has kidney disease, though, he's welcome to try it!
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That sounds familiar. I think someone tried to promote that Q product here on the boards once. When that happened I looked at the web page. There was nothing to make me think it would cure anything.
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a friend: "I'd like to start a web campaign to see if we can someone to donate a kidney to you".
me: Great. But, since it's bad manners to ask someone to do something you wouldn't do, why don't you get tested - that way you can either donate or head the campaign off with "I can't but maybe you can".
response: silence
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I have had numerous people including a paramedic ask me if my kidney failure is from drinking to much! Idiots drinking to much causes liver failure not kidney failure! I have to bit my tongue, I then explain its hereditery. Sometimes I just want to scream!
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**
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This story isn't about me, but I thought about this thread as a result of a phone call I've just received.
I got a call from a professional fundraiser representing the Children's Cancer Network or Wish Fund or something or another, and he and I got to talking, and it turns out that his brother is on the wait list for a kidney. I asked if his brother was on dialysis and if so, what kind of dialysis (just being nosey as usual). He had no idea, just said, "He goes to the hospital and isn't there some machine that takes out all of his blood and then replaces it?" Now I understand that family members aren't obliged to know all of the bits and pieces of dialysis, but my goodness, it's his BROTHER, and he can't be arsed to know the basics? So I go into teacher mode and explained exactly why his brother feels so tired after a treatment and why he has been having some cardiac flutterings and fainting spells. Maybe now this guy will have a better idea of what his BROTHER is going through. ::)
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What a putz. I bet he thinks if he ignores the problem no one will ask him to donate a kidney. Replaces all of his blood? An interesting theory. I bet he hasn't donated blood either. Sometimes it's a lot easier to deal with the stupid comments from strangers/casual acquaintances.
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Had an actual, real MD in the hospital tell me "I didn't know that" when I explained why potential transplant candidates such as myself wish to avoid tranfusions.
Had another MD at the same hospital tell me "I didn't know they did that" (referring to home hemo)
Had my vascular surgeon (who did great work) tell me "I don't think home hemo is a good idea, you have professionals at the clinic taking care of things"
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I'm really getting upset by the stupidity of those so called educated professionals while reading that. I walked out of the yearly transplant checkup clinic when he asked if I had ever thought of maybe asking in the family?
Wow really what a great idea! 17 years on D, and I never thought........
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a friend: "I'd like to start a web campaign to see if we can someone to donate a kidney to you".
me: Great. But, since it's bad manners to ask someone to do something you wouldn't do, why don't you get tested - that way you can either donate or head the campaign off with "I can't but maybe you can".
response: silence
BAHAHAHAHA
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actual convo-
dr is asking me why i think i am fluid overloaded...
me: because i feel like i am, and the er dr said i have congestive heart failure...
dr: But, do you really?
me: .... *blinks* .... *shrugs* i have no idea.... im not a dr.
whhhhhhhhhhhhhaaaaaaaaaaaat?????????????
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actual convo-
dr is asking me why i think i am fluid overloaded...
me: because i feel like i am, and the er dr said i have congestive heart failure...
dr: But, do you really?
me: .... *blinks* .... *shrugs* i have no idea.... im not a dr.
whhhhhhhhhhhhhaaaaaaaaaaaat?????????????
Makes me wonder sometimes if some of them just printed their licenses off the internet!
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I am planning to do nocturnal. Two friends already asked me if they could sit with me while my treatment goes on. I said, no, the idea is, I do nocturnal so that it can go while I am asleep. I appreciate the sentiment, however, I wish they would listen to me when I say NO!!!
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I am planning to do nocturnal. Two friends already asked me if they could sit with me while my treatment goes on. I said, no, the idea is, I do nocturnal so that it can go while I am asleep. I appreciate the sentiment, however, I wish they would listen to me when I say NO!!!
At least they offered! Most people I know would have thousands of excuses!
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
ND:
Yes, and they are making themselves look like an ass, each and every day. :)
Assuming makes an ass out you and me.
EDITED: Fixed quote tag error- kitkatz, Moderator
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Oh Geez! Makes you want to scream. I love it when the medical profession assumes you are diabetic because you have kidney failure. I think I had to tell every medical professional that came into my room this last surgery that I am NOT diabetic! One nurse even said well "most of our kidney failure patients ARE diabetics, too." I just laugh now. What else are you going to do?
One nurse's assistant even asked me, when I had asked for a cup of tea, "Can you have tea?" You would think I would know what I can and cannot have especially in the hospital where they watch you all of the time.
Assuming makes an ass out you and me.
EDITED: Fixed quote tag error- kitkatz, Moderator
I also love when you tell them something and they say, "Are you sure?" I had this when I was in the ER. They were asking me about dialysis and I told them I do home hemo. They said, "You mean PD." I said, "No, I do home hemo." I pulled up my sleeve and showed them my fistula, then pulled up my shirt and showed them I don't have a tube. The ER dr's response, "Well I didn't think patients were allowed to do that!" It was all I could do to keep a straight face!
ND:
I cannot tell you how many times when I was in the ER and I told them about Home Nocturnal Dialysis, they looked at me as if I were from Mars. ER Physican- SO ARROGANT!!!!
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OMG, if I had a dollar for every time I got told BY A MEDICAL PROFESSIONAL that home hemo means PD, I would be rolling in dough.
But on the good side, once I politely educated the uninformed person that no, I really mean home HEMO and yes, I stick 15 gauge needles in my arm every day (they don't have to know that they are blunts >:D) I always got mad respect (as the young'uns say). Most medical professionals I met always seemed to have a needle phobia of some sort. They were more than happy to stick someone else but they always admitted that they could never stick themselves.
I also love when you tell them something and they say, "Are you sure?" I had this when I was in the ER. They were asking me about dialysis and I told them I do home hemo. They said, "You mean PD." I said, "No, I do home hemo." I pulled up my sleeve and showed them my fistula, then pulled up my shirt and showed them I don't have a tube. The ER dr's response, "Well I didn't think patients were allowed to do that!" It was all I could do to keep a straight face!
ND:
Yes, you and I would have a massive fortune of money. Yes, this is a profession of "Do as I Say, Not as I Do."
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Had an actual, real MD in the hospital tell me "I didn't know that" when I explained why potential transplant candidates such as myself wish to avoid tranfusions.
Had another MD at the same hospital tell me "I didn't know they did that" (referring to home hemo)
Had my vascular surgeon (who did great work) tell me "I don't think home hemo is a good idea, you have professionals at the clinic taking care of things"
ND:
Yes, they will take care of you with stupid lectures, high fever, and infections. What a truly great way to live! :Kit n Stik;
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See's Candy lady: "Oh I did not think they did dialysis that long!" after I told her I had been on it fifteen years.
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1. Some people think that because I am on dialysis that I will die in a few days.
2. People who ask "How long do you have to be on dialysis".
3. People who tell me if I eat or drink certain things I will be cured.
4. People who tell me I don't need dialysis and they are doing it to get money from me
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I had a transplant in 2013. When someone asks which kidney did you get the right one or left. . .or ,now you just need one more
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I had a transplant in 2013. When someone asks which kidney did you get the right one or left. . .or ,now you just need one more
:rofl; "Now you just need one more!" :rofl; That is too funny! Did you ask them if they were willing to donate? :rofl;
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LMAO :rofl;
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I am getting ready to get the ileostomy put back down in January.
Kaiser calls today and tells me to come to the pharmacy and get materials to clean my colon out for a barium enema test (Fun, fun)
I told them that that was not possible because I was not hooked up to my colon anymore.
I was referred to an Xray tech on the phone, who told me she would talk to the receptionist and call me back.
No phone call as of yet and it is 9:43p.m.
I threw them for a loop.
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Oh, that's priceless, Kit! Tell them pouring Drano down the kitchen sink won't unclog the toilet. ;D
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While I was in for my transplant recently, I had quite a few doctors want to check my PD catheter. When I explained that I'm on home hemo and don't have a PD catheter, they would say, "But your fistula isn't working". They were shocked when I would say that I have a chest catheter. "You're allowed to use that???"
Apparently, the policy at my hospital doesn't allow home hemo patients to use a chest catheter. Thankfully, my dialysis center is out-of-state and allowed it, as I had so much trouble with the fistula.
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Due to repeated leaks this year, my PD fluid kept escaping. As a result, I had to stop using my cycler at home and do tunneled-cath hemo for most of the last eight months as they'd sew me up in one place, wait for me to heal, I'd use the cycler for a week or two, and then I'd spring a leak somewhere else. Anyhow, a couple weeks ago, after leak #3, I had to re-register at my local hemo center. They made me fill out all of the paperwork all over again, and, like before, I signed the DNR (Do Not Resuscitate) form. [If you look up the stats on how well resuscitation works on hemo patients results, you'd sign it too.]
Back in June this had gone though without comment. This time, however, I got a clucking at by one tech ("You're so young! You can't sign that!"), a lecture by another ("Do you know what this means for your family? Have you talked this over with your wife?"), and the winner, some guy who I had never seen before in my months at the center, who weaseled up to me and said "Since you signed the DNR form, we need to know where to take your body if you die here. What funeral home have you made arrangements with?"
I swear to you all, my project for 2014 is to get that last son-of-a-bitch removed from his job.
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Required paper work for DaVita is what funeral home they need to take you to. They told me we can't let you sit here all day. LOL Nice hua?
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I am getting ready to get the ileostomy put back down in January.
Kaiser calls today and tells me to come to the pharmacy and get materials to clean my colon out for a barium enema test (Fun, fun)
I told them that that was not possible because I was not hooked up to my colon anymore.
I was referred to an Xray tech on the phone, who told me she would talk to the receptionist and call me back.
No phone call as of yet and it is 9:43p.m.
I threw them for a loop.
:waiting; Check the file? My plumbing is rerouted!
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Funny thing, I told them that. They would check with each other and get back to me. Only got back to me when I complained two weeks later.
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Had an actual, real MD in the hospital tell me "I didn't know that" when I explained why potential transplant candidates such as myself wish to avoid tranfusions.
Had another MD at the same hospital tell me "I didn't know they did that" (referring to home hemo)
Had my vascular surgeon (who did great work) tell me "I don't think home hemo is a good idea, you have professionals at the clinic taking care of things"
ND:
Yes, they will take care of you with stupid lectures, high fever, and infections. What a truly great way to live! :Kit n Stik;
You forgot to include infiltrations in that list. Got a really nice big one at my final in-center treatment.
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I went to the doctor to ask why my stomach was distended. After an x-ray he said I was constipated. I took a laxative as directed and I did produce a lot of waste product. Abdomen still stuck out there. Five and a half months later I was carried into a hospital in and out of consciousness and hallucinating. The previous doctor missed three large cancerous tumors that shutdown the kidney function which resulted in renal failure and eight months of dialysis and chemotherapy for two and a half years. During this time, my immune system was weakened and I developed chronic bronchitis and subsequently a pulmonary embolism. Due to the pulmonary embolism and the pain that developed in my chest from coughing, Norco was prescribed. I became addicted. I was up to six pills per day when I decided to drop four of them, cold turkey. I just finished two weeks of the worst misery ever foisted on a human being. I kept two pills per day to control the coughing. All of that is behind me except the chemo.
Next month I will see an allergist about this chronic cough/bronchitis or whatever it is. This will be my fourth doctor with whom I asked about this chest problem. They advice has been everything from a sleep clinic to surgery. Also, next month I will have a CT scan per cancer - we hope it is in remission.
This began with a misdiagnosis. Take my word for this: cancer and constipation are not similar; be an informed patient; make your own decisions and accept what a doctor says as advice.
People treat you differently when they know you have a major illness; they stay away, they don't shake your hand and if they do they wipe their hand on their shirt. Body language. Clearly they do not understand. The most fun I had while on dialysis was when I got a wheelchair while my wife shopped. I ripped around those aisles and people will get out of your way. People will be polite but they won't touch you.
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This began with a misdiagnosis.
I had severe thrombocytopenia (platelets 12) diagnoses as NAFLD (noon alcoholic fatty liver disease) by a local hemotologist. I should have listened to my wife who told me "you don't have that" when I came home with the diagnosis (she is pretty good this way - she told me I had FSGS before the biopsy was done). Once the HGB got down to 6.5 and crit to 20, she had me transferred to a big name hospital where they told me "you don't have that" and found the real problem (niacin poisoning from a cholesterol drug).
And there is the time my wife was hospitalized with Cdiff that she picked up as the side effect for anantibiotic she was given for osteomyletis. The problem is that she didn't have osteoymyletis in the first place - the MDs couldn't tell the difference between the dental work of a tooth extraction and bone erosion.
And there is the time when I went to an out of town clinic and the RN in charge told me there were going to enter 40 for the bicarb setting on the machnine when it was supposed to be 32 (she never go the memo about the +4/+8 issue with Naturaliyte and Granuflo).
So, be careful about trusting what the docs tell you.
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I meant to add that the diagnosis was an ignorant thing to say (in keeping with the spirit of this thread).
Years ago, my wife fell and crushed her elbow. This required surgery and a stay in the hospital. After a week, the surgeon wandered in, looked at her and said, "What are you doing here?" It seems the Doctor forgot about her and the hospital wouldn't release her without the Doctor's order.
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I love my mother death, and I am so lucky that she is willing to be my donor. She also knows that the chemo I'm going to be doing is going to make me lose every hair on my head. At least half a dozen times in less than 48 hours she kept telling me how lucky I was to have such nice thick gorgeous hair, unlike her thin hair.
OMG I have never wanted to scream so bad at her!
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I was visiting my family that lives in long island NYC this weekend. My godsister told my godmother that I was doing dialysis at home with a portal machine. My godmother was very surprised because she thought that dialysis was when the hospital takes your blood out of your body and replace it with new blood. I had to laugh. I told her that I would have been dead by now because the hospital don’t have enough blood to cover me for all these years. Things that people really don’t know. Wow!!! :urcrazy;
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When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"
If she had said it to my face I would have knocked her out ::)
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This just happened a few minutes ago.
I'm a bit concerned with finding work on dialysis here. I raised the concern with my friend and she said, "You don't have to work. There are many people our age that don't work. Such as people on drugs." I replied, "Drugs?!" She said, "Yeah, like heroin or cocaine." I was STUNNED so I asked, "You are comparing dialysis with drugs?" She said "yes." Naturally, I went bonkers. :rant;
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I must be doing it wrong if we are supposed to get high on dialysis!!!!!
Only thing high is my bp at times :Kit n Stik;
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When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"
If she had said it to my face I would have knocked her out ::)
I have what you would probably call a "slow fuse" where it takes an awful lot to set me off. If someone had said something like this to me, it would have been like dipping that fuse in gasoline before lighting it
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When I was facing a return to haemodialysis for the third time (after two failed transplants) and considering my options, a friend commented (was repeated to me later)
"I don't know what she's moaning about its only a short visit to hospital once or twice a week!!!!!!!!!"
If she had said it to my face I would have knocked her out ::)
I have what you would probably call a "slow fuse" where it takes an awful lot to set me off. If someone had said something like this to me, it would have been like dipping that fuse in gasoline before lighting it
I'd slap the :birthday; out of them.
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Oh wow we're to begin to be honest since I am 24 and obviously I hang out with people in my age group and I see them doing stupid shit like taking illicit drugs or drinking to point of black out and I just think to myself why the p*ck are they allowed to do that to themselves and yet get confused between what your kidney and livers do!!! But I digress one very ignorant thing I heard from a registrar asking me "do I like needles"while pushing in the 9th and sorry attempt of putting an IV in. Fortunately for her my dad was with me and could tell I wanted to punch her in the face and I just calmly said "no do u." She didn't reply but I really wanted to say " obviously I don't and I don't think even heroine addicts like it which is probably better suited to your skills and least you would be able to find a vein"
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Last night I said: "I cannot eat white bread anymore upsets the tummy."
Dialysis tech: "You should not be eating it anyway, wheat bread is way better."
I said: "Whole wheat has way high phosphorous. Remember dialysis patient here."
Tech: "Oh yeah."
SIGH!
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I said: "Whole wheat has way high phosphorous. Remember dialysis patient here."
My cardiologist tells me to avoid white bread and eat only whole wheat. The renal team tells me the opposite. The only way to follow medical instructions is to stop eating.
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Same here, what is up with these people anyways. I would rather follow my renal dieticians advice, but, she could be wrong also.
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I begin to wonder sometimes how many cardiologists treat renal patients. My thought would be enough that they should know at least a little bit about each other's patients.
I had another experience where my cardiologist wanted to switch me to a fenofibrate for my triglycerides after my heart attack. I told him that I would have to check first with my nephrologist (they were not in the same medical group at the time so I had to play go-between). When I called my nephrologist, he about fell off his chair and gasped "DON'T TAKE THAT!!" Okee dokee, I'll let cardiologist know, thank you kindly. You would think that something that seemed so basic should have been known by my cardiologist. Even my gastrologist seems to have at least some sort of a clue about what renal patients should and shouldn't be prescribed.
My cardiologist tells me to avoid white bread and eat only whole wheat. The renal team tells me the opposite. The only way to follow medical instructions is to stop eating.
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After canceling my transplant 5 days before surgery, my nurse coordinator called to see how I was handling the disappointment. I told her not at all well. I had weeks worth of meals in the freezer, my in-laws were driving home early from Florida in the ice storm, and my husband and mom were already scheduled off work. Her response was that I could still use the food since it was frozen. I politely told her that I am not allowed to eat any of it, since it was made for someone not on dialysis. She didn't get it. I told her it was all food that was full of phosphorus and potassium, things I can't eat on D. Things I was looking forward to eating after transplant! Still don't think she got it. Made me want to reach through the phone like a cartoon and punch her lol. :banghead;
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White bread is the go, according to the Mayo Clinic. (White bread and mayo.....hehehe!!)
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I work for a large corporation that hires a company to have people call and do "health coaching". I mentioned I was on dialysis and looking into a kidney transplant. The "coach" responded with "at least it's only the kidneys, and you don't have ESRD".
A new standard for ignorance.
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Holy flying spaghetti monster.
Our company has those health coaches too. I would be on the phone to HR in a hot minute letting them know just the kind of service they are getting for the money they are paying.
I work for a large corporation that hires a company to have people call and do "health coaching". I mentioned I was on dialysis and looking into a kidney transplant. The "coach" responded with "at least it's only the kidneys, and you don't have ESRD".
A new standard for ignorance.
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Cattlekid is right. The corporation you work for is getting conned. What did you say to the stupid health coach? Or were you too shocked to reply? ::)
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Holy flying spaghetti monster.
The next time I am admitted to the hospital I will answer Pastafarian on the religion question. If they ask, I will explain it means they have to feed me spaghetti on Wednesdays.
As to the coach, I explained that the terms kidney failure and ESRD are redundant. Still not sure if she understood what redundant meant though :)
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I know it is not funny, but I just have to laugh at the stupidity these people display. And you guys are hysterically funny about it.
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We have to be Jean, otherwise you just cry.
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" we'll, maybe it's better you don't get a transplant"
I'm 29, been on the transplant list fir 5 years and have never had a transplant before.
The woman who said this was a former friend of my mom's. she was a NICU nurse working with pre mature babies ( like myself).
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" we'll, maybe it's better you don't get a transplant"
I'm 29, been on the transplant list fir 5 years and have never had a transplant before.
The woman who said this was a former friend of my mom's. she was a NICU nurse working with pre mature babies ( like myself).
Can I kill her? Like...knives and all?
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Go for it!!! :D
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I told a couple friends about some family members coming over to the same clinic (hopefully) for HD. My friend said, "You should just get married at the clinic! It seems like everyone will be there! And it's catered with sandwiches and cookies!"
I have to admit that the image did pass through my head what it would be like.
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Not terribly romantic.
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I'm post transplant. My pack rat/hoarder neighbor invited me over for snacks. I've been in her house many times. It's impossible to see her kitchen counters under the cr*p piled on them. Her fridge and microwave are coated with grime. She commented to me earlier this year that when she moved into her house about 20 years ago, she didn't realize carpeting needed maintenance. I didn't want to hurt her feelings, but I had to tell her that her kitchen has too much bacteria in it for it to be safe for me to eat food that was prepared there. She emailed me today that she hopes to have her kitchen cleaned up next fall and she hopes that by then cleanliness won't matter as much for me. I had to tell her that immune suppressants are forever.
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My Dermatologist asked me today if the needles were still in my arm. I had 2 squares of gauze where they had been.
I should have said "yes, they just shove them under the skin and dig them out when needed".
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White bread is the go, according to the Mayo Clinic. (White bread and mayo.....hehehe!!)
Hah! My renal dietician told me I couldn't have mayo!
When I asked why she said because it has raw egg in it :stressed;
Unless you make your own fresh mayo all brands of bottled mayo contain cooked egg!!! so fine!!!!
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I told a couple friends about some family members coming over to the same clinic (hopefully) for HD. My friend said, "You should just get married at the clinic! It seems like everyone will be there! And it's catered with sandwiches and cookies!"
I have to admit that the image did pass through my head what it would be like.
Wow. Surely that suggestion should win some sort of award? It reaches new depths of cluelessness.
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I told a couple friends about some family members coming over to the same clinic (hopefully) for HD. My friend said, "You should just get married at the clinic! It seems like everyone will be there! And it's catered with sandwiches and cookies!"
I have to admit that the image did pass through my head what it would be like.
Wow. Surely that suggestion should win some sort of award? It reaches new depths of cluelessness.
Oh it's true, cariad! Cause you know, dialysis is where you get to lay in bed a few hours, watching tv and be waited on. ::) Besides, I can't get married at the clinic. All our techs wear white!
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Now I have got the giggles cos our dialysis nurses wear blue :rofl; but they don't have anywhere to put a buttonhole (of the flower variety!!!!) :rofl;
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lol this tread cracks me up
make some bouquets out of rubber gloves LOL
i have one for u,
i post a lot about my health on my fb, apparently my aunt thinks this is "airing my dirty laundry" ohhhh how badly i wanted to seriously air some dirty laundry on her, but thought better of it. if telling my friends how my health is going is dirty laundry then damn, what would she do if i said i was sick of the crappy way she has always treated me. THAT to me would be airing dirty laundry.
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Started PD may 2013, age 60, so far so good. I don't get out much and even tho we've lived here 18 years we barely know the neighbors.
I'm shocked by the general public's lack of what should be common knowledge, but I am more shocked at everyone's capability to handle all the stupidity without breaking out in violence and seriously hurting some of the idiots you have encountered.
You all have developed a special strength that far surpasses other so called 'normal' people.
I only hope that I become worthy of your friendship.
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Had a stress test administered by an NP. I am standing there in shorts with my shirt off facing the NP while she goes over my medical situation, and ask when my dialysis appointments are. I explain I do it at home. She's looking right at me, shirt off, and asks "I assume you do peritoneal dialysis".
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Dont get me started on Nurse practitioners.
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Dont get me started on Nurse practitioners.
I have had 3 really good and amazing NP, so they are not all bad.
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My PD cath was below my beltline. In shorts, even without a shirt, you wouldn't have been able to see it.
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My PD cath was below my beltline. In shorts, even without a shirt, you wouldn't have been able to see it.
Interesting - I never knew they wen that low.
I am still amaze at how many MDs and RNs have told me they "never heard of such a thing" when I tell them I am on home hemo.
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I've known some good Nurse Practitioners. Just like doctors, there are good ones and bad ones.
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I have been nocturnal dialysis almost seven years and am amazed by the amount of health professionals that have never heard of it.
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Had a stress test administered by an NP. I am standing there in shorts with my shirt off facing the NP while she goes over my medical situation, and ask when my dialysis appointments are. I explain I do it at home. She's looking right at me, shirt off, and asks "I assume you do peritoneal dialysis".
Yeah, the surgeon re-routed my urethra. Instead of connecting to my bladder it provides access through the peritoneal membrane, I fill be connecting to my penis.
When it's time to drain I just go Pee!
Less chance of infection without using any catheter.
D'oh!
Some people. I'd almost bet she'd believe it!
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A few years back when my son was 50 years of age, I was telling him about prostate cancer. He listened intently, waited for me to finish, then asked, "My girlfriend is having pains. Can she get prostate cancer?"
Well Hell! Where did it all go wrong? He must have slipped by the diaphram.
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A neighbor (female) explained that "prostate cancer is more common in men", and she was being serious (although, technically, she was correct).
A few years back when my son was 50 years of age, I was telling him about prostate cancer. He listened intently, waited for me to finish, then asked, "My girlfriend is having pains. Can she get prostate cancer?"
Well Hell! Where did it all go wrong? He must have slipped by the diaphram.
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My husband recently had to have an angioplasty performed on his fistula. One of our brighter inlaws said it was because we are doing dialysis at home instead of at a professional environment. See, it is remarks like that that motivate us and inspire us to carry on! But remarks like that also make me want to slap the heck out of somebody. 'Nuff said.
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My husband recently had to have an angioplasty performed on his fistula. One of our brighter inlaws said it was because we are doing dialysis at home instead of at a professional environment. See, it is remarks like that that motivate us and inspire us to carry on! But remarks like that also make me want to slap the heck out of somebody. 'Nuff said.
Some poeple just don't understand...how ignorance they sound!!! Like my mother use the say, "You so smart until you stupid!" meaning YOU DON'T KNOW EVERYTHING!!!!
:Kit n Stik;
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One of my " acquaintenances" had a job transporting kidney patients to dialysis, which made her an expert on all things kidney. One day she tired to tell me that the dialysis accesses have to be "removed" and replaced every 2 years. OMG!!! I told her I belong to an online kidney group with over 8 thousand members and not a one had ever mentioned that. Finally, she shut her mouth, and just in the nick of time!!!
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:rant; My husband is diabetic, has ESRD, we are doing home hemo dialysis and...are dirt poor. His mother (a self-centered, delirious shopaholic oblivious to others needs or feelings and who fortunately lives in another state), left him a voice mail wishing him a happy birthday and added that she hopes we can go out for some birthday cake. :Kit n Stik; Wow...just wow.
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One of my " acquaintenances" had a job transporting kidney patients to dialysis, which made her an expert on all things kidney. One day she tired to tell me that the dialysis accesses have to be "removed" and replaced every 2 years. OMG!!! I told her I belong to an online kidney group with over 8 thousand members and not a one had ever mentioned that. Finally, she shut her mouth, and just in the nick of time!!!
Don’t you hate when someone tries to tell you something she or he knows nothing about. Why not just ask you if that’s true than to put her foot in her mouth. I had a conversation with one of my friends about AIDS. I was telling her I know a woman who has it for a very long time and that woman did her research on it in order to stay alive for a long time. The woman informed me that people are clueless when it comes to having AIDS as people are clueless when it comes to dialysis. My friend continues to tell me what she thinks she knows instead of listening to what I’m telling her from someone who has it and dealing with it. She was so adamant about it I just changed the subject. :Kit n Stik;
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While looking for dresses with sleeves, my attendant asked what happened to my arm. (AV graft). I explained it was for dialysis. She said, "Oh, I didn't know hair removal left scarring like that!" So, I guess dialysis is a hair removal procedure.
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Hair removal? How confusing.
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Maybe her brain misprocessed "dialysis" into "electrolysis?"
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Well what do you know!!!!
Today a dialysis nurse told me I was privileged to be on dialysis.
I understand some countries don't have the same access to dialysis facilities but PRIVILEGED!!!!!!
Heck would someone else like to have this privilege for awhile?
And when i said I don't have any choice, she replied, yes you do. You can either come or die!!!!!
And this is a dialysis nurse who is supposed to look after and support me.
Good job I was hooked up at that point (I could feel a slap coming on in my fingers)
:Kit n Stik; :Kit n Stik; :Kit n Stik;
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Oh my goodness sugar what is up with people especially in the nursing career?! I've had a bad experience with nurses after my recent bowel surgery, i was left shouting in agony a couple days after the surgery my bowels uncontrollably exploded I'd pressed buzzer needed help nobody came another lady went to get someone they said they were too busy serving dinner! When she did come she flashed me a disgusted look and said can u not go to the toilet?! She gave me clean pants a pad told me to hold my drip and get to the toilet. I was in agony and felt so undignified!!
And when I had my son I got mild pre eclampsia after , a nurse was saying my bp was up and I remember mumbling in my state why is this happening to me, to which she replied (and I will never forget) well 10 years ago medicine wouldn't have allowed women like u to have a baby, the problem is women like you shouldn't have babies!! It cut me to the core, made me feel so guilty!!
But the winner comes from mother in law, at 20 weeks pregnant with my daughter, knowing the kidney was teetering on the brink I told Hubby's parents that the doctors hoped to get me to 32 weeks, to which she replied, but you can't have a baby at 32 weeks it will be mentally retarded!!!! Seriously?! The kidney had a gfr of 17 we needed to think about me and baby, as it happened we got to 35 weeks and she was perfect but only 3lbs 12. Then when she saw her she was about a month old and only just over 4lbs as her weight had dropped to 3lbs 7 and she kept saying shes so small all mine were more than that born, well duh of course they were, they were full term and u didn't have kidney failure. She also sent me a text when Iwas admitted back to hospital with an infection and slight creatinne rise after tx saying sorry things have gone pear shaped we're having lovely time in Australia! Yes that's right they planned a holiday the time my dad was due to donate, meaning when hubby went back to work my mum was taking care of me dad and 2 kids under 4!
And breathe, can feel my bp rising now ;)
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Yes! Deep breaths, lainiepop, deep breaths! My attitude is to tell the lot of 'em to get stuffed! The longer time goes by, the more I'm convinced that only kidney people understand kidney people!
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See Galvo I have lots of very understanding friends (and husband) who are not kidney people. My sister in law (nothing like her mum) researched my gfr, what i was a t risk from during my pregnancys (pre eclampsia etc) and about pre-term birth and she talked lots with me about it. Its not hard we have the internet now! Some people just arent interested and dont want to know i think. The same sister was diagnosed a few yrs ago after a few yrs of problems with crohns disease, so me and hubby researched it, we talk to her about it, but when i asked mother in law how she was and about the chrons she said they didnt really talk about it. Hubbys sister is pretty health conscious and when her mums brother had a really serious heart attack, was in hospital for months and nearly died, she suggested that her mum have a cholestrol test (she had found out from crohns testing that hers was slightly high, despite being super fit super think and eating more healthy than everyone!) and her mum replied, oh no i dont want want to i dont like needles and i dont want to know. (do not complain about needles to a renal patient, even one who hasnt experience dialysis!!) Unfortunately his mum did have to face an issue recently she had to have a melanoma removed from her back, she was very worried about it but of course everyone was supportive, she is fine now.
I think some people are just that way, and i think tbh she never wanted steve to marry me because i had things wrong with me. (She was scared i think i wouldnt be able to have children!!)
I would very much like to tell them to get stuffed sometimes (when i am in hospital it always reopens old wounds but all that happens is i end up arguing with my hubby about them. ) Its hard because they are my childrens grandparents and as i was admitted in an emergency the did come down the day after surgery to take andrew to school and look after elena, (only as my mum was still with dad who'd had the heart bypass op!), but their e-mails were almost like it was an inconvenience, they said well we have nothing specific on the next few days... They stayed the thursday and friday and wanted to go back saturday morning, but elena had her first ballet show and it was 2 performances and someone needed to take andrew home after the first one so they agreed to stay to do that and leave sunday. My parents were gutted they didnt see her on stage, so was i!! They had to get back t decorate their house to sell. Luckily for them it was half term so hubby was off then my mum came up for the forseeable. They didnt visit in hospital, they dont text to ask how i am and even tho we've been married 9 yrs they have never called our home telephone (i guess in case i answer?!?)
I don't think they'll ever change i just think its sad as they are missing out with their grandkids, but at least my kids are close to my parents and know they love them and that my dad gave a very special gift to me so i can raise them.
I dont think its just me tho, and being a 'person with something wrong with them' (altho that makes it worse), lots of my friends have issues with their hubbys mums being weird with them and their kids, and they dont help out lie the girls mum does i think its a mother in law thing. And i will be one one day, but my daughter in law will love me, anyone who takes on my son deserves a meadl, and his sister is whipping him into shape, poor boy will be hen pecked before he gets wed ;)
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I do have some good friends.
I like the ones who accept I only ever drink half of my cup of tea and coffee and never comment.
(My way of fluid control only ever drink half!!!) because NO-ONE makes a half of a cup of tea properly so I like a full cup thank you ;D
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One of my neighbors does PD and was recently taken out in an ambulance. They said her face was all puffy and she couldn't pee. Well, REALLY!!!!!
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"Dialysis ? That's once a month isn't it?" a well-meaning friend...
Ha ha, I wish!!! :waving;
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lainiepop: Either we've both been very blessed or else we share the same MIL! Funny thing, when I first met mine she complained that her other DIL never speaks to her. I suppose that should've been my clue.
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lol PrimertImer! How long have u been married? We'll be 9 yrs in a couple weeks, yet in all that time mil never called our home phone (prob scared i'll answer!) They forgot my 30th birthday i didnt get a card (didnt get one after the tx either) and then she made a comment that her mothers day card arrived late!!
She has 4 kids with the idea that she has lots of kids so is a close family, but one lives in australia, hubby doesnt see or talk to them much, the youngest brother is in contact even less, only the sister lives nearby but she is mad busy at work, and they dont have the mother daughter relationship me and mum do. But then im the only one and so very close to my parents, as ive had so much time with them both, mum is my best friend (and i love how my lil girl already says mummy my best friend!) and dad donated the kidney, cant get closer than that (not too sure she was happy bout that, but then better than her son dong it!!!)
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lainiepop; We've been married for 7 years. We married late in life, no kids. Before we married I had the uh, pleasure of speaking with my future MIL on the phone. Her birthday was coming up and she wanted to tell me to make sure that her son got her the right gift -an expensive bottle of perfume! I just about fell out of my chair! Bad enough when someone tells you to get them a gift, it's even worse tho when that gift is an expensive one. At that point, it's no longer a "gift".
When I was a kid, my Mother always had a flower garden. A friend of the family who lived down the street also had a garden and she would bring my Mother fresh-cut flowers, telling us that your garden won't grow unless you share your flowers. Something tells me she wasn't just talking about flowers.
Anyways, you sound like a wonderful mother, daughter and wife....and with what you've shared with them most certainly is growing a lot of love! Beautiful blooming love! :flower;
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I told a close friend about my fistula, what it is for and how it was done. I tried my best to make him understand what it was, i even made him put his hand on it to feel the blood rushing through.
1 day many weeks later he grabbed my arm forgetting about my fistula .... i reacted and told him to be carefull with that arm ......
"Oh yes you have that spinning thing in your arm, i forgot".
Spinning thing???? ..... I never even responded. He converted all that information i told him ... into "spinning thing".
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Aww Primetimer i dont always feel like a very good mum! I try my best but have bad days (like all mums, and i have more excuse than most!) I am v fortunate i am able to stay at home and not work as hubby supports us, as i love staying home with the kids and honestly dont think id cope with work as well! Dont know how others do it!
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I told a close friend about my fistula, what it is for and how it was done. I tried my best to make him understand what it was, i even made him put his hand on it to feel the blood rushing through.
1 day many weeks later he grabbed my arm forgetting about my fistula .... i reacted and told him to be carefull with that arm ......
"Oh yes you have that spinning thing in your arm, i forgot".
Spinning thing???? ..... I never even responded. He converted all that information i told him ... into "spinning thing".
I'd give your pal a break on this one. Being a motorcycle racer, no doubt the words "wheels, spin and spinning" are part of your vocabulary on a regular basis. In fact, I think that's what I'm going to start saying to my husband when I check his fistula every day; "oh honey, I can feel that spinning thing!" I kind of like that better than saying I feel the "thrill" because I don't. I mean, I do but I don't. Well, you know what I mean.
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Aww Primetimer i dont always feel like a very good mum! I try my best but have bad days (like all mums, and i have more excuse than most!) I am v fortunate i am able to stay at home and not work as hubby supports us, as i love staying home with the kids and honestly dont think id cope with work as well! Dont know how others do it!
Don't be so sure that others cope so well. You are doing waay more than the average mom does. Think about that. Now of course, some will say how do I know that since I've never had kids. Well, I may have never had kids but I did have a mother and that's how I know!
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I told a close friend about my fistula, what it is for and how it was done. I tried my best to make him understand what it was, i even made him put his hand on it to feel the blood rushing through.
1 day many weeks later he grabbed my arm forgetting about my fistula .... i reacted and told him to be carefull with that arm ......
"Oh yes you have that spinning thing in your arm, i forgot".
Spinning thing???? ..... I never even responded. He converted all that information i told him ... into "spinning thing".
Oh, yeah, there is a lot of that. People just don't realize. :banghead;
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Last year I went to the ER because I had the flew and I felt so aweful I thought it was going to push me over into emergency dialysis. I was terrified out of my mind and crying when the ER doc said, "I don't know what you are so upset about. You'll just get a transplant and then everything will be fine."
As if kidneys magically fall out of the sky to be transplanted and then last forever and everything is a piece of cake.
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Last year I went to the ER because I had the flew and I felt so aweful I thought it was going to push me over into emergency dialysis. I was terrified out of my mind and crying when the ER doc said, "I don't know what you are so upset about. You'll just get a transplant and then everything will be fine."
As if kidneys magically fall out of the sky to be transplanted and then last forever and everything is a piece of cake.
I must come and live near you so I can catch the odd kidney or two!!!!
And that from a Doctor!!! (what the hell do they teach em in medical school???)
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Ninanna my renal doc said something similar when my GFR hit 10. He told me you will have a live donor TX and it will be pre emptive! Um ok then! I should have asked him if he was gonna get tested to donate ;)
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Last year I went to the ER because I had the flew and I felt so aweful I thought it was going to push me over into emergency dialysis. I was terrified out of my mind and crying when the ER doc said, "I don't know what you are so upset about. You'll just get a transplant and then everything will be fine."
O FFSake!
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LMAO yes I have experienced all that has been said here and know I just accept people's stupidity as a sixth sense even the nurses I have to deal with are so ignorant n have no sense of humour, as I was in hospital having bloods taken from my fistula and jokingly said oh I should take up heroin my kidneys are dead and have a giant vein anyway n the nurse said "oh you don't want to take heroin" in a serious tone. It was obviously a joke and I laughed even though she looked at me like I'm going to become a junkie in the next five minutes n I felt like saying to her u should take heroin to be less of an uptight judgmental bitch with no sense of humour lol.
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I was admitted to the hospital 2 weeks ago for low calcium issues. I had a new dr come examine me ( he looked older. But he must've just graduated med school. He does his pointless exam ( which included me following the movement of his finger) and asks me " what's going on with your right eye"? I have been blind in my right eye since birth the retina is destroyed and there is scarring on the eye itself that is a very pale blue.
I tell him. I am blind in that eye. I can't see out of it.
He says. Oh. So it's a prostetic. I said no its not. I just don't see out of it. He said oh. So both eyes.. I looked at him like he was retarded. I felt like saying umm no special ed and "blindly" touching his face with my hands like Helen keller
But I didn't.
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Poor Punkybruister...
...I admire your patience...
... this doctor must have "just come out of the egg" so to speak...
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I think that they should only allow resident drs see a patient with the accompaniment of an actual seasoned dr. Lol someone who knows how to listen to words. And understand when spoken to.
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I think my local ER is getting used to seeing me this year, I don't get as many idiotic statements as I used to!
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I think that they should only allow resident drs see a patient with the accompaniment of an actual seasoned dr. Lol someone who knows how to listen to words. And understand when spoken to.
i think doctors should be taught communication skills and bedside manner as part of their training and have to pass an exam in it!!!!
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I made an appointment for partner to see GP as I thought his BP meds needed adjusting now he has been on dialysis 8 weeks, he'd been feeling a bit off after dialysis.
As they squeezed him in a 4th year student took him in before his GP..... as if we needed to go right through his past 10 years medical history...very frustrating and partner
gets a little short with medical staff. I actually said to her and who makes the final decision on his meds...the doctor does....then why waste our time....the doctor decreased exactly what I had
said should be decreased. It's like we have all the time in the world to sit around a medical centre.
Oh and med student said are you going to have a transplant?????? We are only 8 weeks on dialysis......and already over people asking this so I think we will just say no!!!
I can appreciate the frustrations you have all put up with !!
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I'm sorry you, and your hubby had to go through that, and yeah, that's how you'll get treated a lot. However, after a few years I could just ring the GP, and ask for prescriptions,or referrals. I hope you don't have to go there anytime soon
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It was after a round of dialysis, I am telling family I am tired and cranky and just trying to hold it together until dinner, my Mom says she knows how I feel. I snap: "No you do not!"
How in the world does she understand how I feel? There are no words to describe the after feeling of dialysis.
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No there aren't, even close friends don't understand why I don't want to drop in for coffee on way home from dialysis.
I am shattered. I doze in the car on the way home. Then I want a quick sandwich and a cup of tea and a snooze. I often go to bed for an hour and just zonk right out.
My body needs to recharge and replenish. My brain switches off. I am cranky for awhile. And I need carbohydrates...
"Post dialysis haze*.... ::)
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The strange thing is how bonded I feel with the people I know at dialysis, I show up a little early and sit and talk with them about life sports and other topics but the most important feeling is that these people understand the dual nature of our shared experience. Glad for the treatment and at the same time dreading it. I don't think anyone who has not sat in the chair for a full session can really understand the experience. Even my wife only thinks its a minor change in our life, not the dragon I have to go and slay three times a week.
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No there aren't, even close friends don't understand why I don't want to drop in for coffee on way home from dialysis.
I am shattered. I doze in the car on the way home. Then I want a quick sandwich and a cup of tea and a snooze. I often go to bed for an hour and just zonk right out.
My body needs to recharge and replenish. My brain switches off. I am cranky for awhile. And I need carbohydrates...
"Post dialysis haze*.... ::)
I was once lying in the next bed to another lady in hospital
and she was sent to another department within the hospital
for dialysis three times during the week.
I remember that she was not communicating or able to answer any questions
to anyone after returning from a dialysis-session,
because she was much too exhausted and in urgent need of a rest...
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With tears in her eyes the lady who cleans our house begged and pleaded with me that if only I would pray Mr Malibu's kidneys would heal. :Kit n Stik; Seriously...
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My father in law says he feels poorly all the time and not getting any better and that doctors told him his heart is old. He complains that he's tired and having to rely more and more on his wife. Says getting old is no fun. My father in law is...87 years old, golfs, travels, still drives, gardens, goes to the gym and cooks for 10-15 people every Sunday. And has never had the experience of...dialysis. Hate to say this but sometimes when he complains about his life, I feel like telling him to "put a sock in it!"
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:clap; No that feeling well when people say "I'd love to have a 4 hour sit down this morning!" or"You don't understand I have to go to WORK!!!!"
:Kit n Stik; :Kit n Stik; :Kit n Stik;
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I am a home NxStage patient, and recently had an in-center treatment in another city when traveling (hauling the cycler was not practical). The staff was wonderful, reviewed all medical orders with me before starting, cooperated with my self canulation, and did a great job.
When I was done, the RN who took care of me asked with an incredulous tone "I was just wondering - why would you ever want to do this at home?".
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Why would you ever want to indeed... ::) :rofl;
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Oh god ...
for a start to escape all the crap nurses in dialysis centres!!!! admittedly there are a few good uns but ..... :Kit n Stik;
We are doing our own dialysis in centre whilst we finish training/have machine installed and one nurse insists on standing over us and watching (just in case) no-one else does
and keeps making little comments like have you done that..i wouldn't do it like that ..you shouldn't leave 2mm of blood in syringe because she might have a low hb !!!!
SHUT UP!!!!!!
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Oh god ...
for a start to escape all the crap nurses in dialysis centres!!!
I have never run into a bad nurse at a center, and I've used quite a few (I use clinics when I travel, since it is usually without my care partner, and it's easier on my partner for me to leave for a few hours than sit with me in a hotel room). The usual reaction to self-canulation is "oh good, less work for me" and I've never been criticized on my technique.
My pet peeve is nurses/techs who "help" by unwrapping the needles and setting them down with the other connection supplies. I use buttonholes, and the brand I use (FMS harmony) has the scab pick exposed, so the package should be opened just before use, and with care not to disturb the sterility of the pick.
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I have been on dialysis 16 years and my mother STILL asks me if I am going to dialysis if I am visiting her on a D day or if I have something planned that might run interference into it. She does not live with me either! I have not missed a treatment in all these years.
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My aunty always asks me if I'm STILL doing 'that dialysis thing' when I'm on holiday too. Just weird how they think that you really only do D when you are bored or something.
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I have been on dialysis 16 years and my mother STILL asks me if I am going to dialysis if I am visiting her on a D day or if I have something planned that might run interference into it. She does not live with me either! I have not missed a treatment in all these years.
When my family and friends do that to me, I shout them down. I tell them I do not need you to ask me about when and what time I did my treatment. I got this. It makes me very, very upset as if I need you to remind me. THEY DO NOT ASK ME AGAIN!!! ::)
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I have taken to telling my family and friends who ask me if I am going to D: "Nope, do not feel like going, going to go shopping at the mall tonight."
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Oh kitkatz, that's too much. Hmmm... I could see a movie or go to dialysis. Which is most fun? Like you're going because you love it.
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I was in the hospital last month and they wanted to cath me to do a clean catch urine, I tried to tell the nurse that I don't pee, but she kept insisting that I was not relaxed and that if I'd just relax she could get a specimen (as she jams the catheter tube around up inside me) Thank God for another nurse that happened to come in at the time, and when the mean nurse said she won't relax so I can get a specimen, the good nurse said, well she's on dialysis she doesn't pee!! Well mean nurse stomps out of the room like its my fault I don't pee. I wanted to give nice nurse a hug.
Ya it is amazing what some staff don't understand! When I went to London, ON (2 1/2 hrs up north) to where my transplant hospital is, as part of the transplant work up, a nurse there was telling me that I had to have a full bladder for one test. I told her over and over again how that was not possible and she tried to tell me that if I didn't have the full bladder that the test would have to be cancelled til I came in with a full bladder. I just ignored her and went in anyway and the test was never cancelled :P
Had exactly the same thing myself.. After hanging around waiting for an exam, then being told I needed a full bladder.. Then they misplaced my notes.. After 5 hours of waiting around I went home!:)
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"How long would you live if you stopped dialysis?"
(Why? Do you think I put you in my will?) :urcrazy;
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I get this all the time: so which one of your kidneys failed? Ummmm Both
I would not be in kidney failure otherwise. Or about transplant: which kidney did
You have replaced? The right or left one?
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Yeah, I get that one, too. :lol;
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I think the thing that pisses me off the most is when people who have no p*cking idea of the implications of kidney disease tell me what I should eat, that I should see a homeopathic or naturopathic doctor, that they've heard of some herbs/vitamins/etc that will cure iga nephropathy even when its the first time they've actually heard of the disease, and that I should waste money on organic food or waste money at whole foods because it should make it go away.
"Oh but spinach and bananas are good for you!" yeah, except that they can kill me.
I get this all the time: so which one of your kidneys failed? Ummmm Both
Oh god I hate that one. They understand that somebody can live with one kidney and when they hear that you are needing a transplant and/or are on dialysis they honestly don't piece together that both must have failed.
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Further proof that the average person is CLUELESS!
And we are surrounded by THEM.
And they VOTE!
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When the clueless people gave me dietary advice and told me that spinach, etc, would be good for me, I'd drag out my soapbox and begin educating them about the dangers of high potassium levels and how those molecules are too large to be filtered by damaged kidneys and that too much or even too little serum potassium could lead to faulty electrical signals to the heart which could in turn result in a cardiac event and then I'd proceed to phosphorus and how too much phosphorus can result in the body trying to balance phosphorus and calcium by leeching calcium from your bones which can result in osteoporosis and how potatoes are high in phosphorus along with whole grain cereals and bread which is why those otherwise healthy foods are not good for me and then I would begin to explain how...and then I would watch their eyes glaze over.
Easy peasy lemon squeezy.
:P
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I have one good friend who, when I go visit him, does nothing but list foods and asks if I can eat them. I finally blew up at him, saying I have to think about that 24 hours a day anyway and I came down to visit with him to get my mind off that particular subject. Then I got into my truck and drove home (4 hour trip). He got the message and hasn't asked me about my diet since.
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The lovely people who mean no harm, but tell me to continue to fight for a transplant. Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?
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There are exceptions to every rule. One has to be persistent and ask questions in the right manner, and of the right person.
Low BP should be manageable as are many other conditions. Good management should be reason enough for exception to a poor rule.
Just my opinion.
You worked very hard to meet the qualifications that they had set. For them to come back once you have met those qualifications and THEN to deny you for a PRE=EXISTING condition that they already knew about is very wrong. They put you through a LOT of stress when they should have told you in the beginning.
THEY are in the wrong. You have done EVERYTHING they required.
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Kitkatz, my heart is breaking over your news. Sending you hugs.
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The lovely people who mean no harm, but tell me to continue to fight for a transplant. Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?
I don't know where you are located or if this would be possible for you, but I was denied a transplant by my local hospital ("You've had more immunosuppression than anyone should ever have in their life" - said the surgeon). I was very upset - I was 27 at the time and I'm supposed to live the rest of my life on dialysis??? My nephrologist told me to look for another hospital. I am now listed with a transplant center out of state.
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The lovely people who mean no harm, but tell me to continue to fight for a transplant. Now how the heck is that gonna happen when one of the largest and best transplant hospitals has told me no for one?
Why, if you don't mind me asking?
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You may have missed it. KK spelled out her 'low blood pressure' was the excuse for denial.
I've already spelled out my anger with that team, I believe they are unreasonably wrong. But KatieV does make a good suggestion, other tx centers may not use the same thing to bar listing. That bears checking into.
KK, you have come so far. Literally worked your butt off to meet their qualifications. You cannot simply give up. A kidney IS out there with your name on it. You are going to have to keep your spirit strong and it WILL happen. Not today, but not that long that you can make it happen. This is just another test. Difficult, but you have already shown that you can do it. Keep on doing it.
Charlie B53
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Kitkatz keep the faith, I have a friend who was told she could never have children, after she somehow got pregnant she was told she couldn't carry to term, when she went into labor they said she needed a csection, the child who popped out on her own just graduated from high school. There are more than one transplant program, find another. If Joyce had listened to her doctors she would not have had the joy of motherhood. I know several people listed at multiple centers. Have your doctors point you to other centers don't give up.
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You may have missed it. KK spelled out her 'low blood pressure' was the excuse for denial.
I've already spelled out my anger with that team, I believe they are unreasonably wrong. But KatieV does make a good suggestion, other tx centers may not use the same thing to bar listing. That bears checking into.
KK, you have come so far. Literally worked your butt off to meet their qualifications. You cannot simply give up. A kidney IS out there with your name on it. You are going to have to keep your spirit strong and it WILL happen. Not today, but not that long that you can make it happen. This is just another test. Difficult, but you have already shown that you can do it. Keep on doing it.
Charlie B53
Sounds like when I was denied transplant for a very long time because my BMI was too high. And the thing is, it was too high because I had edema so bad that I had about 40lbs worth of water in my legs, and they even saw that my legs were really huge but it wasn't up to them, rather it was up to the insurance, and the insurance (medicaid) had no appeals process for this kind of thing. It was either you meet the BMI requirement, (<35) or you don't get listed; that simple, even though I was already below the transplant team's requirements (<40 BMI.) And for whatever reason, my nephrologist at the time didn't want to prescribe diuretic so that I could get listed.
After I finally got diuretics, I literally dropped about 50lbs in 2 weeks and finally got listed. That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.
It was funny because when I had my meeting with the transplant surgeon, (he has the final say of whether or not you are a candidate for transplant) we were talking about medication afterwards and he mentioned that I needed anti-biotics to protect against valley fever, and I said "don't you mean anti-fungal?" (valley fever is caused by a fungus) and he realized how knowledgeable I was and told me that I'd probably be one of the best candidates he's ever had.
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That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.
Under the current rules, you are credited from the start of dialysis, even if you want years to get waitlisted.
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Correct me if I am wrong, but I always thought Dr''s reluctant to prescribe anti-fungal as they are very hard on the liver. Toenail bed fungus, some call it Jungle Rot can be a real pain to get rid of, as are some lung fungal infections such as Legionnaires.
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Oh my gosh this topic "ignorant things people have said to you" is soooo funny some of the comments I've read :) Thanks for sharing them :rofl;
How incredibly frustrating/ irritating are other comments :Kit n Stik;
And sad to hear of some comments too :'(
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That took away a year of my waitlist time; I could very well have a cadaverous transplant by now had it not been for that.
Under the current rules, you are credited from the start of dialysis, even if you want years to get waitlisted.
I haven't started dialysis. Not sure if I even want to if it came down to it as these past few years I've been heavily questioning whether or not I even want to live anymore. Kind of a separate topic though.
Correct me if I am wrong, but I always thought Dr''s reluctant to prescribe anti-fungal as they are very hard on the liver. Toenail bed fungus, some call it Jungle Rot can be a real pain to get rid of, as are some lung fungal infections such as Legionnaires.
In many areas in Arizona and California, valley fever is a huge risk. Most people are exposed to it almost daily, but your immune system tends to be really good at preventing infection. However if your immune system doesn't work that well then you can get infected, and once infected it becomes a chronic condition, even if you restore immune function later. The symptoms are basically like a really bad chronic flu and/or COPD like what happens to smokers.
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At one time my doctor told me On home diasysis I will feel so good I wont want a kidney
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I don't think so. Granted, I am not sick like I was before PD, nor do I have the swelling leaking legs getting infected any longer.
But I am still constantly tired and achy, unable to physically do near what I used to.
15 different types of pills taken three times daily.
16, I forgot the binders.
Limiting drink, some foods.
This is NOT how I used to live.
But I will admit, it does have it's advantages over NO Dialysis
Without, I wouldn't be here. So even though I HATE Dialysis I have to be Thankful.
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I get asked this dumb question from people that I don't see very frequently:
"How are your kidneys?"
WTF?? I am on dialysis, how do you THINK my kidneys are? I usually just answer, "They still don't work" or "They suck, how are yours?"
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Further proof that the average person is CLUELESS!
And we are surrounded by THEM.
And they VOTE!
*L* We're doomed....... :banghead;
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I got
Do they remove the kidney on the side the transplant kidney is put in, do they remove the old pancreas and a few other other dumb transplant related things asked by medical personnel at my local hospital.
Then there are the idiots who come forth when it comes to my guide dog as we are working.
EDITED: Nov 8, 2016 - Spelling - CharlieB53 - Mod
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Then there are the idiots who come forth when it comes to my guide dog as we are working.
Is that the
"Can I pet your dog?"
"No"
"Why not?"
"Because he's working."
"He doesn't look like he's working"
type conversations?
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My horrible nurse called me fat at my last weigh in. I actually had gone down from last month from 120 to 118 (I'm only 4'11). THANKS JEN! :sarcasm;
Then when my neph came in to see me 10 minutes after, she asked if I had purposely lost weight and told me to not lose any more. So... :waiting;
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My horrible nurse called me fat at my last weigh in. I actually had gone down from last month from 120 to 118 (I'm only 4'11). THANKS JEN! :sarcasm;
Then when my neph came in to see me 10 minutes after, she asked if I had purposely lost weight and told me to not lose any more. So... :waiting;
That's horrible! My younger sister (a pediatric patient) had "____ obese" (forget the descriptor) typed in her "After-Visit Summary". My mother insisted on having it removed. She's overweight, but not obese - and got that way due to medication issues.
I started dialysis AGAIN in August 2015 and was in-center for a year until I was able to switch to NxStage. I was so sick on dialysis between high blood pressure issues/migraines/fluid shifts that weight was dropping off me. My blood pressure was super high (often 230/124) and my neph kept saying "if you lose weight, your blood pressure will lower". I came right out and asked her multiple times, "I've lost x amount of weight with no difference - how much more do I have to lose?"!!!! (It was actual weight, not fluid weight.) I ended up losing 70 lbs in a year; I'm now 150 lbs at 5'7". My weight is staying stable now that I'm on NxStage.
Then - last week when I was in the hospital for a chest catheter infection, I got a visit by a renal dietician. She was checking in with me because they were concerned that I lost so much weight. Where were they LAST YEAR?
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Yeah... I mean, I'm overall ok with my general weight. My nurse is just... how can I say? Not the brightest crayon in the box. No tact what so ever. Very much follows like a checklist in dealing with patients... when you have a question or have a situation that is outside of the "norm", she gets very flustered. *sigh*. The rest of the team is awesome though.
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While I was in the hospital a doctor ran up and loudly announced he had found in my lab work that my creatine levels were very high. As panic insued I calmly pointed out that that may be the reason I was scheduled for 4 hours of dialysis in about a hour. If he had just looked at the orders he would have avoided the embarrassment.
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My younger sister (a pediatric patient) had "____ obese" (forget the descriptor) typed in her "After-Visit Summary". My mother insisted on having it removed. She's overweight, but not obese - and got that way due to medication issues.
I have "morbidly obese" written on my charts... I'm 5'1" and about 220lbs... I've never been thin.. I have pictures of me when I was 3 and 4 years old, and my body is exactly the same shape then as it is now.. just smaller... I was doing some research on the genetic condition I have that caused my kidney issues, and a page (which I wish I could find again) had a physical description of the typical patient.. and it was me.. right down to the short, wide feet... I'm actually inactive on the transplant list right now until I can get the weight down below 215lbs...
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My nephrologist referred me to Hematology because of low platelets and WBC. So yesterday, the nurse is taking my vitals and freaks out that my blood pressure is so high.
"Do your doctors know?"
"Yes"
"But you're not on any blood pressure meds"
UMMMM....yeah I am. We just went over my med list and the FIVE different blood pressure meds I take!
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I laughed at the Kaiser automated phone call telling me my GFR is high after fourteen years on dialysis.
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So last night I was talking to my father who lives in Anchorage far away from Virginia. We talk a few times per year. I was talking about our recent trip to Spain and tried to mention how much time dialysis takes, when you add up the bus to the center, waiting for hookup and bus back the 3.5 hour session can take up 7 hours meaning a full day is basically shot. He speaks up and asks how often I have to do that, then precedes to be amazed when I tell him every other day! In his mind dialysis was something done say once per month! I guess my I can deal with this attitude means that I'm not stressing to everyone I meet how much of a time commitment this is...
Also my wife is always amazed when making plans for Friday night with friends how they are surprised when they learn I'm not part of those plans. And those friends even had a mother who was on dialysis for the final months of her life...
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I laughed at the Kaiser automated phone call telling me my GFR is high after fourteen years on dialysis.
You mean low? Or creatinine high?
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Iolaire. , anouther misconception about dialysis patients ,a lot of people think you are half dead , or at least very sickly ,and of course some are. , But my husband would come home from his school bus route at 8:30 AM , get hooked up at the center at 9:00AM , get back at 2:30 PM just in time to getting the bus and pick up kids at schools for the ride home . He finished the route at 5 PM . He had a 90 passenger bus - big bus. He would start out his day at 6:00 AM . Said the bus and kids gave him a reason to get up in the morning . Lucky the dialysis center was really close by. He has a good working transplant now and is still doing the school bus route .
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Iolaire. , anouther misconception about dialysis patients ,a lot of people think you are half dead , or at least very sickly ,and of course some are. , But my husband would come home from his school bus route at 8:30 AM , get hooked up at the center at 9:00AM , get back at 2:30 PM just in time to getting the bus and pick up kids at schools for the ride home . He finished the route at 5 PM . He had a 90 passenger bus - big bus. He would start out his day at 6:00 AM . Said the bus and kids gave him a reason to get up in the morning . Lucky the dialysis center was really close by. He has a good working transplant now and is still doing the school bus route .
Yes, sometimes I worry the whole SSI opportunity means people who could work and have more "normal" lives opt to go onto SSI and loose that meaningful support that being outside of the house brings. Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...
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Ok back on topic... Ignorant things people have said to you....
Rerun, Admin :police:
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Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...
I think this is a, maybe not ignorant, perhaps more on the tactless side, thing to say.. some of us young folk go the disability route because we can't work anymore.. when I was working and on dialysis, I was falling asleep on clients.. I just didn't have the energy for it anymore.. I worked a year longer than I wanted to just so I could qualify.. I turned 39 at the end of last month
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Its great for people who can not work, but what about the young people who might miss out on a career and be stuck and some tiny SSI payment for years or their entire lives...
I think this is a, maybe not ignorant, perhaps more on the tactless side, thing to say.. some of us young folk go the disability route because we can't work anymore.. when I was working and on dialysis, I was falling asleep on clients.. I just didn't have the energy for it anymore.. I worked a year longer than I wanted to just so I could qualify.. I turned 39 at the end of last month
Your experience seems like a good example of why the SSI option was created. I would say not being able to stay awake equals "can not work."
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thats great Riki glad husband felt well enough to work ,and transplanted now that's awesome! ooops sorry Rerun.
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I was hospitalized a couple of years ago with Rocky Mountain Spotted fever. Your typical Dr on a hospital floor has no idea about dialysis or dialysis patients. The Dr ordered a urine analysis. I told the little nurse that came to get it " That's not going to happen" and explained that I am a dialysis patient and don't make urine. She took off back down the hall.
Dr comes down herself to demand that I give a urine sample. I told her "That's not going to happen".
She said I will just have you catheterized. I laughed and asked her if she understood, digging in a dry hole.
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"Why don't you want a transfusion" followed by "I didn't know that" after explaining alloimmunization - at this was from an MD.
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"Why don't you want a transfusion" followed by "I didn't know that" after explaining alloimmunization - at this was from an MD.
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thats great Riki glad husband felt well enough to work ,and transplanted now that's awesome! ooops sorry Rerun.
Huh? I think you got me confused... I don't have a husband, never did.. nor has this fictitious husband had a transplant.. *G*
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First time i was wrong today. A little scattered. was thinking you did and he was doing just great inpart due to having a motivating perpuse .... sorry aniT to smart sometimes. Blake how am i doing Rerun.
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One of my neighbours asks me on a regular basis if I am getting better from that nasty "kidney-thing"? :sos;
I honestly can't get upset with her because, somehow, she really means well...
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Wife has ben nagging me to get my hairs cut. Weather is hot and humid, my beard is way full. I thought it may be cooler if I gave in and got ALL my hairs cut.
The Lady at Great Clips was telling me about someone's relative that recently 'finished' dialysis and doesn't have to do it any more.
Oh Really? He had a kidney transplant?
No, he got better and doesn't need dialysis any longer.
Yea, Right.
Some people haven't a clue and must believe failing kidneys are much like a cold or flu, something that you will get over with and be well again. NOT.
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The Lady at Great Clips was telling me about someone's relative that recently 'finished' dialysis and doesn't have to do it any more.
Oh Really? He had a kidney transplant?
No, he got better and doesn't need dialysis any longer.
Yea, Right.
actually, that can happen, if the kidney failure was caused by an injury or illness, and the kidney just needs to heal.. dialysis gives the kidney a break, and once the kidney is healed, they don't need dialysis anymore.. one of my teachers in high school was injured in a sporting event of some kind and was on PD for a year until his kidneys recovered.. When he found out that I had been on PD, he felt the need to tell me..
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Over the years I have seen several of my associates who's kidney function improved and they were able to stop dialysis. They usually had acute failure while being treated in the hospital for another condition. A drug or procedure "stunned" their kidneys and the kidneys needed some help for a while.
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There is a huge difference in sudden kidney failure and the progressive demise of the kidneys from so many permanent causes.
It is a wonder that those that do recover are able to lead a normal life again.
It will be a wonder when the medical field finally does develop a 'replacement'' kidney for the rest of us on Dialysis.
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Had to go to ER one time because they gave me enough heparin to wipe out my clotting ability. My doctor was to come after he finished at the office. It is a teaching hospital so he always has the interns and residents with him as he is head of transplant. He has a reputation for sternness, but he and I get on well. Anyway, he comes in and is pissed right away because an ER doctor put a stitch in my graft and on top of everything else did so with no local. Then he tells a student to get him some iodine. Kid comes back, and even though I see what is about to happen, I cannot stop the kid. He tells the Dr he could not find iodine, only these pads as he holds up betadine pads. Needless to say, he will not make that mistake again. Next day, doc calls the dialysis center. His exact words, I do not know to this day, but it has not happened again at our center to the best of my knowledge.
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There is a huge difference in sudden kidney failure and the progressive demise of the kidneys from so many permanent causes.
It is a wonder that those that do recover are able to lead a normal life again.
It will be a wonder when the medical field finally does develop a 'replacement'' kidney for the rest of us on Dialysis.
My grade 11 geometry teacher stopped me in the hall one day and started asking me about the transplant I'd had about a year and a half earlier. I'm not sure where he heard about it, possibly one of the other teachers. It wasn't exactly a secret. Anyway, he was asking all these very specific questions about my time on dialysis, like hemo or pd, and copd or ccpd, things you wouldn't expect a general person to know. He finally told me that he'd been on capd for about a year until his kidneys came back. He never said what caused his kidneys to fail, but he's fairly active in sports, (he was also one of the gym teachers. Suffice to say, my mom loved parent teacher interviews while I had him *L*) so I'm guessing it was some kind of sporting injury.
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I agree the worst two are people asking if I have checked into a transplant. Like gee, never thought of that. The other is being told of a person knowing someone who died while waiting for a transplant. Not exactly the mental image being cultivated.
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I was out the other day getting lunch for my sister and her kids and had a lady come up and ask me "Are you all right?"
I must have looked ragged, but I felt okay.
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Uber driver picked me up form dialysis: If you don't get a transplant, isn't being on dialysis just waiting to die?"
Gut reaction: What an ass. Here I am vacationing for a week in Vegas. Do I look like I am waiting to die?
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My favorite so far is when I told my niece's mother-in-law I was on peritoneal dialysis, she asked some really weird questions until I realized she thought it was 'perineal' ... So I said No, I'm not doing dialysis through my vagina! And she's a psychologist. Gotta love it!
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One of my favourites is "I am praying for you" or "you are in my prayers" or similar inane comments
My standard response ".......well you can save your breath because it clearly ISN'T working!" :sir ken;
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Keep being asked why don't I do Hemodialysis like it's the most natural thing in the world...they don't seem to believe me when I tell them I can only do PD because surgeons say my veins are too small for HD &
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Husband has had Diabetes several years and is on insulin and dialysis. His family and my side all know that. Few years back he had to have the tip of a toe amputated (found bone infection). It was mentioned at a family gathering. Someone on my side said "Yup. Dialysis is one of those diseases that slowly takes a person limb-by-limb". And he said this not just to me but in front of my husband. My heart sank and I felt so bad for my husband hearing it being put that way. In mixed company no less. There are just some people who have absolutely no filters. :stressed;
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I Believe that family member confused Dialysis with Diabetes, which shouldn't really surprise anyone as the common person hasn't much of a clue about either disease until they themselves are diagnosed.
The high sugars of diabetics destroy nerves in the body, reducing feeling in the extremities to the point of near total numbness. Patients cannot feel even a minor 'sore' of an ingrown toe nail thus even the slightest of infection which would be no problem in a more 'Normal' person, can easily rapidly become life threatening and require amputationn to the diabetic.
The sooner we all realize that we are surrounded by idiots, and learn to ignore their lack of education, which is NOT included in most any school other than life experience, The sooner we can ignore their ignorance and move on.
But sometimes you just want to reach out and SLAP someone!
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I Believe that family member confused Dialysis with Diabetes
To be fair, I have both and sometimes accidentally use one word when I mean the other. :embarassed:
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Yes, I meant the family member said "diabetes" takes (kills) a person limb by limb. As if my husband didn't know. He didn't need someone reminding him what diabetes can do to a person. My husband wouldn't do this but he should give himself his insulin injection in-front of that person sometime...and while they are at the dinner table about to take a bite. And then remind that person that it's to avoid the diabetes from you know, taking him limb by limb... :sarcasm;
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When I was young, fat, and not physically active, I was shown amputees in wheelchairs and told I would get diabetes and that would happen to me if I did not exercise more and eat less.
Didn't work, I still got diabetes.
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Every time I got one of those "you're in my prayers", I rolled my eyes so hard I sprained my brain. :banghead;
One of my favourites is "I am praying for you" or "you are in my prayers" or similar inane comments
My standard response ".......well you can save your breath because it clearly ISN'T working!" :sir ken;
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Ignorant Things People Have Said:
Fresenius telling us we owe them for a year of dialysis. :rofl;
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I like the look I get from people when I tell them that I haven't peed since 2007. Even medical professionals that know I'm on dialysis give me that questioning look
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I've known there are times when you just have to wait and 'hold it', but this is stretching it a bit!
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i designed a t-shirt yesterday
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I LOVE it!!
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What's the most ignorant thing someone has said to you regarding dialysis?
My 'winner' was: "Boy, I wish someone would make ME sit in a recliner for four hours!"
If only they knew. Four hours in that chair is torture for me. Until they have experienced it, they will never know what it is like to have kidney failure.
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What's the most ignorant thing someone has said to you regarding dialysis?
My 'winner' was: "Boy, I wish someone would make ME sit in a recliner for four hours!"
If only they knew. Four hours in that chair is torture for me. Until they have experienced it, they will never know what it is like to have kidney failure.
I had a nurse, who's since moved on to another job, who decided that we had it pretty good in those chairs, until she decided to try it out herself. She didn't last 20 minutes. Mind you, we don't have the lazy-boy type chairs. What we have are glorified stretchers with arm rests, head rests, and foot rests. We can move it up and down, and lay it back, along with raising and lowering the head and feet. It also has an emergency button on the bottom that a nurse can hit with her foot that puts the head down and the feet up. It's quite an experience when they hit that button
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Actually, I doubt they could take just sitting in the worn out chairs for four hours, much less with a couple of inch long prongs shoved in the arm, Tape everywhere, and every time you move the machine rings its bell.
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My sister was on dialysis for 7 years, got a transplant 8 weeks ago via paired exchange. While going to the hospital during her pre-surgery evaluations, nurses asked her at least 3 times, how often she checks her blood sugar. "Never." After getting shocked looks she would say, "I am not diabetic." It's presumptuous that a medical professional would think her ESRD is because of diabetes. Read the chart.
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Triage nurse at ER intake: "Which kidney did they transplant, left or right?".
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Triage nurse at ER intake: "Which kidney did they transplant, left or right?".
Hello Simon, isn't there a valuable difference between a left- or a right-kidney-transplant, not only for the recipient (more physical difficulties, also more possible difficulties with anti-rejection-medication etc.) but also for the donor (possible chronic pain etc.) because each kidney functions physically a little different from the other with different "jobs" to do etc.? I have heard that a left kidney-transplant causes more future-medical-problems for the donor and also for the recipient?
Many thanks from Kristina. :grouphug;
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The kidneys do not have different jobs, but there are mechanical (not biological or filtration) differences. The left is usually slightly larger. This is similar to how the left testicle usually is slightly larger and hangs lower*, a man's Johnson generally goes down the left leg of pants**, left feet are often very slightly larger than the right, and in some women the left breast is slightly larger.
Surgeons often prefer the left because the ureter is longer and makes for an easier install. Living doners may be better giving the right, because the vasculature of the adrenal gland is better on the left. This is consistent with more medical problems for the left donor. I am not aware of the left presenting more problems for the recipient, however, forcing the surgeon to use a shorter ureter may be of some benefit to the recipient (just guessing on that one).
My MD was second in line for the corpse, and the right kidney was the only one available to him. He seems to think that a bit odd because the left one had a big cyst on it, and the surgeon ahead of him in line chose that, but that just shows the prejudice towards taking the left one if you have a choice.
But, back on topic - it was clear the triage RN was asking me "which of your kidneys was replaced", not "did you receive a left or right kidney".
* - Ok, so how many of you reading this paused to check?
** - Tailors call this dressing to the left
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I thought most kidney transplant recipients didn't get replacements, just an additional one. I know I didn't lose either one. Technically I have three but I was told the original ones would gradually get smaller and smaller. Although I recently read about transplants where recipients received two kidneys. I hadn't heard about this. The surgeon for my live donor told her she had a small cyst on one of her kidneys so that's the one I would get. And I was honored to get it.
The questions and comments I have heard from medical professionals (not even getting into nonprofessionals who get a pass) regarding kidney transplants and kidney disease is unsettling. People need to get out more.
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I thought most kidney transplant recipients didn't get replacements, just an additional one. I know I didn't lose either one. Technically I have three but I was told the original ones would gradually get smaller and smaller. Although I recently read about transplants where recipients received two kidneys. I hadn't heard about this. The surgeon for my live donor told her she had a small cyst on one of her kidneys so that's the one I would get. And I was honored to get it.
The questions and comments I have heard from medical professionals (not even getting into nonprofessionals who get a pass) regarding kidney transplants and kidney disease is unsettling. People need to get out more.
The old kidneys are generally removed only if they cause a problem (like PKG kidneys getting to the size of basketballs). Pre-xplant I had to fight off MDs trying to prescribe transfusions to anemia (borderline case) and had one actually ask "Why?". I said "You know I am a transplant candidate and your asking why?" ..... "Yes" ..... "Alloimmunization" .... "Ok, I understand now". I watched a great teaching moment when the chief hemo guy a the hospital schooled a resident why the patient was refusing a transfusion, and why she should honor the request.
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Ah yes. This is what I thought.
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Triage nurse at ER intake: "Which kidney did they transplant, left or right?".
:secret; lol