If it weren't for IHD...

[angela515]

I would probably go insane because of how little people know anything about transplants, dialysis, or ESRD period. When I try to talk about my medical problems or past experiences to my new b/f he don't really understand the full extent as usually he comments back, "Oh, that must have sucked but luckily your over that now."... Uhm, NO, I am never going to be over ESRD, it doesn't go away.. I am just being treated with a transplant for now. I care for him, and so I try to explain it in as much detail as possible, and give him the site's addy, but I don't think he checks it out, or still understands the full extent of what we go through... I just find it frustrating as heck when people just shrug off ESRD as if it's just the common cold. 

Had to get that rant out.

[donnia]

I understand angela.  People think just because I am in dialysis now that I am supposed to feel 100% better.  That would be nice but it aint happenin!

[Romona]

Perfect timing. I love my sister dearly, but today she was complaining about her sinus problems. Her bills, this is high that is high. I have several thousand of medical.Well if my only health problem was sinus problems right now I'd jump for joy. I'd love to use a vacation day for fun not medical appointments!
If feel better now! I do appreciate this gift I was given. I just get a little frustrated.
Thanks Angela! By the way your daughter is too cute!
I want to hear more about the new boyfriend.

[charee]

I couldn't agree more , we are all going through the same thing and I find no body understands it gets quite depressing , but when I'm on here it gives me a lift, and i also agree your daughter is a real cutie

[boxman55]

Real close friends for me try to listen to you and I think they get or at least express concern when you try and explain things but... I always have had the feeling that most people shun the topic or change the subject right away, and this is just my thoughts, that they are afraid the donate thing will come up. I could be way off base but once a lot of people, family included heard my sister is getting tested the topic comes up more often. Maybe it is because they feel their off the hook. This is just my crazy thinking...Boxman

[KICKSTART]

Yes isnt it great if you are doing dialysis you are cured ..if only !!!

[Lori1851]

Just had to comment on this. I am not a kidney patient but a mom to a son that is. I get this kind of comments all the time. So..... when will Dustin get his transplant? Why is he not in any hurry??? Another dumb ?. Well lets see my response is "do you know much about kidney disease? A transplant is not a CURE its another form of treatment and thank God there is that option. I tell them its not like waving a wand.
So... I feel ya!!!
Lori/Indiana

[kellyt]

Totally agree!  I've ranted about this before.....

I returned a call to my friend on Thursday afternoon and, of course as predicted, she was way too busy to talk.  She haphazardly asked how I was doing and when I told her my doctor wanted me to transplant in March if my brother is a match she said "wow.  can I call you back tonight after I put the kids to bed so we can really talk?"  "Of course".   I'm still waiting for her call.

This is the same friend who when I told her about having to get a fistula and such, her only response was "The scar won't show.  It's under your arm.  You can wear long sleeves".  Who the F*** cares about the scar?  Not me!  She had no response to what a fistula was and what it meant for me later on!!!!!!!!

I have one friend who truly understands, but only because she has been through her own personal hell.  She was picked up and dropped over a balcony at a party in college and now she is a paraplegic with multiple finger amputations and both legs below the knee.  She is the ONLY one who has asked me "How do you feel about all this?"  "Are you doing okay?"  You know, when I found out I had to get the fistula and begin the evaluation.  I love her dearly anyway, but even more just for that!!!!

[BigSteve]

Looks like we getting into the "dumb things people have said to you" topic.  I have now been on
dialysis for a month, and I am already tired of the questions about how I am doing.
I think my answer in the future will be: "I love dialysis so much I think I will do it the rest
of my life."

[stauffenberg]

While you have to expect that healthy people will have no understanding about renal failure, what is especially distressing is that their ignorance seldom stops them from imposing their own views on you concerning 1) what caused your disease; 2) what you should do to deal with it; and 3) how to cure it.  I always wonder how or where they think they picked up so much information about the disease, or why they think that my doctors and I do not know as much as they do?

One step worse even than that problem, however, is the fact that physicians who are not trained nephrologists also know absolutely nothing about endstage renal failure, but still insist on imposing treatments and advice on their renal patients based on what little the doctor assumes he or she knows about the disease.  These doctors also show no interest at all in learning anything about renal failure, even to the extent of listening to the patient's corrections and looking up the information on the internet to confirm that the patient is right.

For example, I have been under the treatment of a leading endocrinologist who scolds me because my cholesterol is high, insisting that I am not compliant with my lipid-reducing diet.  I explain that two days before my transplant I had a normal cholesterol level, but now, a few years later, on a much healthier diet than I had when my cholesterol was normal, the level is twice as high because this is a standard symptom caused by cyclosporine.  I have read three textbooks on renal transplant which have stated that cyclosporine elevates cholesterol so intensely that dietary interventions are ineffective to reduce the level.  Whenever I tell my endocrinologist this, I can see it just goes in one ear and out the other, because she does not know anything about cyclosporine and does not care to learn anything either.

While it is standard practice in most professions to do research on the client's specific problem before giving advice (as in law, for example), in medicine it is assumed that the doctor knows everything necessary without doing any specialized reading, no matter how unusual the case at hand.  Libraries in law firms are huge, but in the average teaching hospital, the library, if it exists at all, is purely tokenal.

[st789]

Concur, even doctors are idiots too, like my liver doctor.  He said like you look healthy so you are ok now??

[paris]

It doesn't matter how much you try to inform anyone---they really don't listen.  We had dinner in Ohio with my husband's brother and wife.  Near the end of the meal, the BIL asked how the transplant stuff was doing.  We have explained over and over about the PRA, how many people have been tested, 2 yrs on list-----he truly doesn't hear. I see his eyes glass over, he starts looking around the room.  Then he asked "I don't understand why your kids don't give you a kidney".  OMG! I don't ever want to talk to him about it again.  If it were as simple as he believes, we would all be walking around with new kidneys.  Then he talks about their pastor who had kidney disease and he got sicker and sicker, finally had to retire early and eventually got a transplant. He was explaining to us how exhausted the guy was and how bad he looked.  DUH!!   I give up. 

I agree with Angela--thank goodness we have IHD.   Angela, more details about the boyfriend!! You know how nosy we all are

My sister saw a t-shirt that said "this disease must be working for me because everyone keeps telling me how good I look!"

[goofynina]

Concur, even doctors are idiots too, like my liver doctor. He said like you look healthy so you are ok now??

   Unbelievable, what an idiot!!

Lately, due to my condition getting worse, i have alienated myself from my friends, i cant sit and visit and pretend everything is ok cuz its not and besides that, i am in too much pain. BUT, when i start telling them why i cant go over or what is wrong with me, i feel like all i am doing is whining and they dont want to hear it, so now i dont even call anyone anymore, funny thing is no one calls me either    I still have Christmas gifts that i should've given out, but havent and i have a Baby Shower gift sitting at my front door and the party was in the end of OCTOBER, lol, aye yi yi, what have i done with my life  

[lola]

Because Otto's not on dialysis yet we are ALWAYS asked when will he start and oh he'll feel sooooo much better. OMG and then when I tell them Otto really does not want to do dialysis again so we hope to find him a living donor they say oh. and how do they know he'll feel better on dialysis how fast they forgot he almost died doing dialysis 4 years ago. I love Ihd because I can say things and you guys LISTEN you don't tune me out and that's what I try to do for you also. xoxoxo you ALL

[jbeany]

I have one friend who truly understands, but only because she has been through her own personal hell.  She was picked up and dropped over a balcony at a party in college and now she is a paraplegic with multiple finger amputations and both legs below the knee.  She is the ONLY one who has asked me "How do you feel about all this?"  "Are you doing okay?"  You know, when I found out I had to get the fistula and begin the evaluation.  I love her dearly anyway, but even more just for that!!!!

I know what you mean - the only friend I've got who gets it without having ESRD himself has cancer and does weekly chemo treatments that leave him unable to get out of bed for the next two days. 

[kitkatz]

It doesn't matter how much you try to inform anyone---they really don't listen. 
My sister saw a t-shirt that said "this disease must be working for me because everyone keeps telling me how good I look!"

I need that T-shirt!

[Rerun]

My new response to "how are you doing?"

Each day is better than the next. 

[jonn r]

as my dad says to me everyday......so how do you feel today....my answer is most days i feel like crap...then i tell him 90% of the time i feel like sh*t its good when the 10% happens .....wish it was more

[Wattle]

It doesn't matter how much you try to inform anyone---they really don't listen. 
My sister saw a t-shirt that said "this disease must be working for me because everyone keeps telling me how good I look!"

I need that T-shirt!

Me Too. I am so sick of being told how good I look. My answer is always the same "looks can be deceiving".   

   Then I feel like punching them in the kisser!       My personality has changed with dialysis.

[angela515]

Thanks everyone.  It's always great to know your not alone with such feelings. 

So, since so many have asked, the boyfriend thing.,.. I have known him for almost 2 years, but we have only been dating 3 months. He is way younger than me, but has the same relationship goals as me, looking for a life partner and he knows I am also looking for another parental figure in my children's life. He is very old fashioned even though he's younger as he does things like open car doors for me, regular doors, try's to always pay the tab, and he try's to be romantic as well even though I want to keep things kind of slow for right now as it's been awhile for me to be back into dating. He's a really great guy, and he's trying to get a better job for me, to prove himself to be a person with good career goals and so on... so really the only problem I have seen was the whole not really understanding ESRD, but that I'm working on with him.. by just asking him to listen and let me show him things on here and such.. lol. He even has set aside some Sundays for just doing things with my kids involved too so they can get to know him as well. So far, things are going good. 

 

[Romona]

 
I hope he is a keeper! He sounds wonderful. He seems to be trying.

[Rerun]

When people say I look good.... I'm thinking to myself..... Compaired to what?

[Psim]

"this disease must be working for me because everyone keeps telling me how good I look!"

  sounds like quite a few of us relate to this... what is it with people? They are **always** telling me I look great. It's a complete mystery to me. We all need that tshirt.

[mmmmdeedee]

It doesn't matter how much you try to inform anyone---they really don't listen. 
My sister saw a t-shirt that said "this disease must be working for me because everyone keeps telling me how good I look!"

I need that T-shirt!

Me Too. I am so sick of being told how good I look. My answer is always the same "looks can be deceiving".   

   Then I feel like punching them in the kisser!       My personality has changed with dialysis.

I agree with that one too. We try so hard to not be the wet blanket all the time even though we may feel like crap. The other day at work I wasn't feeling well but still went on as regular. I finally had to go home and told my co-worker I wasn't feeling well. All he said was, "Boy, well you fake it real well."

I guess I showed him when I ended up in the hospital that weekend!

[kellyt]

When people say I look good.... I'm thinking to myself..... Compaired to what?

When people tell me I look good my first thought is do they think I'm lying about being sick?  Then I feel I have to tell them how weak and tired I am blah, blah, blah, kidney evaluation, blah, blah, blah AV fistula, blah, blah, blah, living donor, blah, blah, etc.   It's half way through all this crap that I realize they really aren't listening and don't really give a damn.  They just said I looked good so that they would hopefully get a "Thank you.  You too" response.

I've heard before, and I'm sure you have too, that when people ask you how you are doing in general they really don't want the truth.