I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: KICKSTART on August 19, 2009, 04:43:47 AM
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Setting aside all the bad stuff thats happened during my switch to hemo. I have to say i really do hate hemo with a passion , after the 'luxury' of PD and i really dont know how or if i can come to terms with this , but i also know i cant come to terms with stopping , although it has crossed my mind. PD was never an issue for me , i just got on with it and for some reason it felt like no big deal ..but hemo , hemo, feels like a prison sentence somehow. I dont think its the control issue , its just the whole package , the invasiveness of it all , the needles, the pain, the travelling backwards and forwards , the hanging about , the ignorant moody nurses. Im going to see a therapist as soon as she can organise an appt , may she will be help , maybe not? How do you come to terms and accept hemo? I know its live or die , but how do you become 'at peace' with it ?
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Hang in there Kickstart. You can do this!!!!
:grouphug;
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Distractions. That is how. My son burns me shows. Currently I am watching an HBO series called "The Wire" I am just about to start season 4 this morning thanks to the fact that someone sent me a new DVD player. On my little table I always have the DVD player, a book (my glasses), an Ipod shuffle, a tiny radio I used to use while I jogged & a set of ear plugs. I switch between my distractions and when I can, sleep(hence, the ear plugs). Sleep is great because the time goes by and you are not aware. The lady next to me prays the rosary witch I think is a great idea for passing the time. I have only been at this since the end of March and am having a hard time as well.
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You know something, Its like starting a new job. You may not like it but its something you do to survive. You put in your time and then get on with living your life. Hang in there, things will get easier with time. You know what to expect and the little problems become more bearable. We all are here for you, so vent away when you have too, let us be strong for you like you have for us.
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I,m on HD for 5hrs 46mins, the longest in a unit of 252 other poor sods. In order to survive this a routine is needed together with your props.
First a TV guide so you can plan your viewing rather than just aimlessly surfing through the rubbish and missing start times of programmes that interest you.Take that days newspaper and read none of it until you are seated also keep a book just for dialysis.
Try to sleep with headphones on listening to MP3s that have play lists you have made up of melodic songs. Take in a snack and a drink but do,nt eat it until you are at least half way through your session so you have something to look forward to.
If its possible start up discussions with other patients, football and/or sex seems to get the attention of many on my unit and can easily eat up 60 minutes.A couple of us on my ward brought in some electrically powered mini helicopters these remote control devices kept us and the nurses highly amused for many hours but have recently been banned by the Camp Kommandant ( unit manager )
There must be many time travelling tips and hints that will follow I hope mine will help.
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I feel so bad for you. I personally cannot give you any advice since I'm not on dialysis but I saw my dad go through it. I can only tell you my experience as care taker. (my dad lived with us because he would seem to "get lost" and not show up at the center then I'd have to go all over looking for him. I didn't know that I had PKD until after he died but the whole time I took care of him I just kept thinking what an awful life; having to live on a machine to keep you alive.
My dad was really good about it. He fought us in the beginning but then he just accepted it. (You really don't have any other choice unless you don't want to live any more).
Maybe that's why I'm so scared of it. I saw what he went through and I don't want the same for me, but as with him, I have no choice.
Trust me, I don't want to even do PD let alone sit in a chair for 4-5 hours and put up with all that goes with it and I think I would feel exactly like you do. I know I would go into a deep depression if I had to do hemo. So I guess its only natural to feel like you do. I wish I could do something for you but unfortunately I can't. The only thing I can do is try and support you and just listen. Sometimes just talking about it can help.
I'm not going to say to you that "in time you will come to terms with this" because right now I'm sure you can't see that happening. So theres no point in saying something so cliché. At least here you have people who understand and can relate to how you feel.
So if you ever find out the solution to make you think dialysis isn't so bad, please let me know. I'm sure I'll need it some day! Take care.
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I am sorry to here you are battling with this. I can see that it can be a VERY BIG change from PD.
I am honest and have to say.... I have been racking my brain trying to come up with some funny exciting thing to keep you busy while going through HD, but nothing.....
I will cross that bridge when I get there but for now my dear friend... I am thinking of YOU and I wish you get to terms with it or at least acceptance.
Hugs
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Is getting a hemo machine in your home and option?? Thats what I will be doing soon.
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I agree with some of the other suggestions - find things to do to distract yourself with. I don't like it but I just see it as part of life and like you did with PD just "get on with it" - I have 5 hour sessions and they are pretty darn long (and I feel even more for keefbear now reading that he has MORE than that! argh!). I try to NOT watch the clock tick down and I distract myself with shows I download to my laptop to watch, or DVD's, or listening to kidney talk on my ipod, or tempting the nurses with M&M's and twisting their words until we all laugh (and then I have to remember not to laugh too hard lest a needle pop out!! :rofl;) or we talk about our dreams to travel, or our pets or families, or love lives (in this case they harass me about my lack of one mostly!!).
Some days are REALLY HARD I grant you. worse when something goes wrong and you get a *#)$#*)# cramp or crash or something, or just so boring nothing can relieve it, or uncomfortable to the point you want to get up and run out... These things happen - I can't deny that they don't.
However I remember that it's only part of my life, and try to not dwell on it. When I walk out of there I don't think about it till I have to go back. I think about ways to harass the women of IHD, or work stuff, or how sweet my kitty is and that I'm going to see her soon and have cuddle time, or how hot the girl that just walked past was.. or whatever....
The thing is to have a sense of humour and remember that Dialysis is NOT the be-all and end all. Doing this will allow you the ability to do the things YOU want to do.. like play with your dogs, ride the horses, see your family, and all of that stuff.
Remember you have only just started KS, and have had trauma and a lot of frustration and hassles... when you stabalise into a routine you'll be more BORED WITLESS than anything else, and even the needles won't be an issue for you. You'll be like "meh.."
OK after 3 years I still don't LOOK at them, I turn away and think about something else (ok usually X rated... you know.. to get the blood flowing... I'm all about helping the nurses you know !! :rofl;) and then they're in, I fire up the laptop and it's all good.
Hang in there - things will improve !!! :grouphug; :grouphug; :grouphug; :grouphug;
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excellent advice richard. :2thumbsup;
you should counsel beginners.
:clap;
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only the cute ones!!! >:D :rofl; >:D
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I do read each and every post and take in all you write. It seems to me that every dialysis centre is different. At best the one im hoping to stay at doesnt even gove you a little table by your side or something to put anything on ! If it doesnt fit down the side of your chair/bed then you cant get it till after dialysis. As for chatting and sleeping ..well im one of those people that cant fall asleep in front of a load of strangers ! I probably would snore my head off :rofl; so i dont sleep and as for chatting ..everyone else either has headphones on or is asleep. It doesnt help as i seem to be the youngest in the group and if the other day was anything to go by and we get the same chairs every time then im in with 3 old men !!! :2thumbsup; one stone deaf , one slept all through and the other watched tv and slept ! NO sexy nurses on my shift !! God forbid i end up back at the other place , theres no one to plug anything in for you , the beds are all at funny angles so although you know there is some next to you all you see is there legs. I tell you the other place is a hell hole.
But apart from the boredom i need to be at peace with hemo , ive been in control for sooooooooo long . I know i can get involved in this (home hemos not an option) I just think im still in shock ?
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you've had a pretty rough ride kickstart. i didn't find too much to sing about when i was doing in-center hemo, a few years back. i'm sorry home hemo is not an option for you. i know that since i've been doing home P/D that i feel much better, generally. i do miss the social interaction that was available at the center, but i too was the youngest, or one of the youngest there, so it wasn't too easy to relate to very many of the other patients. i dread having to go back to hemo, so i'm just hoping that my peritoneum hangs in there. i feel for you.
:grouphug;
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KS, I really feel for you. Although I am doing PD and love it, my peritoneum is wearing out and they are supplementing it with one session per week of hemo, so I cant get rid of my line! Ugh. One thing that did help, we have a DVD player and get movies(new and old) from the Public Library to watch. Each 4 hour session, we watch two good movies with a small intermission. I know eventually I will have to go back to straight hemo, but this is still giving me a bit of freedom. We just call it movie night and try not to let it get us down. Take your time and think positive! Maybe they will come up with something better eventually.
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Richard mel has really good ideas. If you have a catheter and you like to knit, crochet, embroider, quilt etc you can things like that while on hemo. One of the ladies at the unit hubby was at made a quilt while she had a line and donated it to the unit to use as a fundraiser ( they sold tickets on it) . Ask if yu can bring your own table to lay things on, you know one of those fold up ones. Things will get better KS.
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it will get better as time goes on --
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I don't think Davita Med Center got the memo that it is supposed to be BETTER....
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they got it and
laughed
and gave us the new rules
no food
no talking
no company
no saying who sticks you
no talking rule -- as soon as you get to know a neighbor and start talking -- you are separated - I was told dialysis is not a social hour
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I'm sure glad the unit hubby used to go to was so 'friendly'. He was allowed to eat, socialize and have visitors!! He had a treatment at a center yesterday. I put his needles in but couldn't do anything with hooking him to the machine because it was a totally different machine than we have at home. I went and got myself and him some lunch and I stayed in the unit during his entire treatment. The nurse even went and got me a chair to sit on!!! :thumbup;
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they got it and
laughed
and gave us the new rules
no food
no talking
no company
no saying who sticks you
no talking rule -- as soon as you get to know a neighbor and start talking -- you are separated - I was told dialysis is not a social hour
No food - does this apply for diabetics (and will they take the fried chicken away from the old lady who's daughter feeds her with her fingers?)
No talking -- nobody to talk to anyway but will this apply to people who spend the day talking on their cell phone?
No company - hope this gets rid of some noisy visitors.
No saying who sticks you? That's the one I got today. Was told by this guy I'd never seen before if I didn't let him stick me I'd have to wait an hour for someone else and that the place was too big to always have someone I knew and trusted to stick me.
Does this mean looking for a smaller unit elsewhere? Its the only place my doctor visits but I guess there are other doctors.
I hated saying "I hate... but I'm there now! Bring on all the corporate greed. I've dealt with it before.
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Twirl, you're joking, right?
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twirl, that is complete BS. You have the right to refuse treatment by anyone at any time. And not being allowed to talk is totally rude!
kickstart, hang in there. The first month is absolute hell. It took me that long to settle into a groove. Distractions are good. I found an mp3 player the most useful - I could blast something I wanted to listen to when the other patients were yelling or snoring.
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Could have said the same things and better things about my unit 2 weeks ago Del (and did many times). Times change when the bottom line becomes primary and patients secondary (or lower)
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At Davita Med Center Dialysis, the largest dialysis center in the world, as of this week you cannot say who sticks you. That part is not a joke.
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OMG! Twirl and Dan. this is awful! I wish there were some way to change things for you!
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Just reading your post gets me angry. People are insensitive. Don't you just want to sick a needle in their arm....or perhaps somewhere else!!
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they got it and
laughed
and gave us the new rules
no food
no talking
no company
no saying who sticks you
no talking rule -- as soon as you get to know a neighbor and start talking -- you are separated - I was told dialysis is not a social hour
Twirl, that is crazy, but I do know how to get around one of those rules... learn to self needle, it would something that you would never regret
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Hey twirl, I found 2 clinics that aren't Divita. Might be worth looking into.
CYPRESS CREEK DIALYSIS CENTER
9449 GROGANS MILL RD
THE WOODLANDS, TX 77380
(281) 363-1262
Mapping & Directions
Type of Ownership: Profit
Corporate Name: FRESENIUS MEDICAL CARE (FMC)
Facility's Initial Date of Medicare Certification: November 20, 1980
Facility Services
Shifts Starting at 5 PM or Later: NO
Number of Hemodialysis Stations: 15
In-Center Hemodialysis: YES
Peritoneal Dialysis: NO
Home Hemodialysis Training: NO
SPRING DIALYSIS
607 TIMBERDALE LANE, SUITE 100
HOUSTON, TX 77090
(281) 880-7066
Mapping & Directions
Type of Ownership: Profit
Corporate Name: REGIONAL-TRC TEXAS LP
Facility's Initial Date of Medicare Certification: October 07, 1998
Facility Services
Shifts Starting at 5 PM or Later: YES
Number of Hemodialysis Stations: 18
In-Center Hemodialysis: YES
Peritoneal Dialysis: YES
Home Hemodialysis Training: NO
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I think twirl got the same info that I did. Both Houston area davitas. They said no "self service" which specifically mean sticking yoursel. I'll be writing letters to lots of people this weekend as soon as the anger subsides. Twirl, you can help me. I'm going to check with Tina on facebook to see if she had a similar experience.
Any comments or suggestions for the letter would be appreciated as well as any corporate names.
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as for no food, I think they'd be hard pressed to deny food to a diabetic. The only One I was informed of was the sticking rule (cannulation???)_ but not much patient interaction in there. Now that I recall, the staff barely spoke on Wednesday...
I am wondering how you feel about staff complaining that they are so tired from being overworked, extra shifts, etc? I seems to me I want people who in charge of messing with my blood to be alert.
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What happens if you talk to yourself?
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What keeps me going is knowing that I have the ultimate control to stop.
:cuddle;
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WOW
Twirl amd DW WTF kind of rules are those. Some i quess i can kinda see but no tlaking?? No computer?? Why not just throw you into a cell for four/five hours.
The bigger some companies get the greedier and more obnoxious they become. I am SO GLAD i dont use Davita.
I mean really arnt you kinda there boss? Dont you pay there saleries in an offhand way.
I feel for both of you and anyone else using such a sad pathetic unit. No talking. There is a first ammendment
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The first ten years are the hardest then it just......
sucks some more!
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Wow! I cant believe what I'm reading from twirl and Dan (and sorry KS we kind of hijacked your thread!).... that is unbelieveable! !!!
The stuff about no talking and it's not social hour?? Oh my god, I am sure I have read a paper somewhere about the positive effects of community in a dialysis center and that if you have to go through this it's better if you CAN talk!!
Geez, at our unit everyone talks to everyone! Nurses, patients, guests.... if they put some stupid rule like that in it would last about 5 minutes. Absolutely ridiculous.
It seems that the bean counters who come up with rules like that clearly have no conception of reality and have forgotten that people are dealing with a terminal condition here and if something simple like having a snack while doing it or being able to chat helps even a little bit then it should be allowed. Who does it harm (well apart from the fried chicken smells making everyone hungry I bet!).????
I would be absolutely outraged and I would definitely write lots of letters. I wonder what the social workers think of these rules. I know my mother, who was a chief social worker of a major hospital, would have been appalled !
I am so sorry you guys have to deal with that crap. As if Dialysis isn't difficult enough making petty rules like that just make it worse... and I am all the happier for my awesome unit with the friendly nurses and patients (even the deaf Greek ones who yell at each other!)
incredible !
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What happens if you talk to yourself?
I usually get a more reasonable and intelligent response.
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This kind of treatment and these kinds of rules are inhumane and everyone ought to protest them. Richard is completely correct about the letters and some possible social worker involvement.
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The only rule I was told about was the "no choice of stickers" and no buttonholes. The other's were given to twirl... I had no problem with those if they come to me, no talking (no one near me talks), etc.
But I was promised a woman who is the expert in buttonholes to be the only one to stick me when the time comes, and I was promised that I could learn to do it myself once they were created. I'll limit my letters to that issue.
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About who sticks you. Yes, we get nurses assigned to us (or usually it's more like whoever is free to put you on given a lot of people start around about the same time as the shift changes over from morning to afternoon). I don't mind they are all pretty good - some better than others. I've never actually challenged anyone though so I'm not sure what would happen if I said "I don't want X to stick me" - I'm in two minds on that one. In theory the patient should be given the choice where it is reasonable (if so-and-so always has problems with me why should I not request someone who has no problem?) but I can also see it from a staffing point of view. In the buttonhole situation Dan talked about when I was being suggested for buttonhole(they decided against it in the end claiming my fistula was mega mature and it wouldn't really benefit me????) they said it would be the same person doing it, but they also wanted to put these plastic "guides" (I think it was called the "Biohole kit"-sounds a bit rude ! :rofl;) so that anyone could needle the spot with the guides.. but we never got to that point because they decided against it.
I think what some of these dialysis units forget is that we are still patients and dialysis is classed as "life support" - yet some people are treated like, oh, passengers on a bus or something... for some it's more about numbers in and out and less about people and their lives.. which is sad.
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" think what some of these dialysis units forget is that we are still patients and dialysis is classed as "life support" - yet some people are treated like, oh, passengers on a bus or something... for some it's more about numbers in and out and less about people and their lives.. which is sad."
I think the "passengers on a bus" sums up the whole situation.
Get your stuff get on.... don't talk, don't walk around, don't eat, don't complain when its late..... and GET off.
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Yesterday the chief nurse was whinging to me because some patients were coming in and demanding this particular chair or that particular position or machine or something and she was fed up with it. In one way I can understand - we have this one guy who comes in - he comes in AT LEAST an hour earlier than his scheduled time and if he sees an "empty" machine (nevermind that it may be disinfecting, or down, or primed for someone else) get gets upset and says it should be for him because he's showed up early (hmm) but THEN if he doesn't like the chair they have setup he whinges about that etc.... and when you get folks like that you can understand the nurses getting a little fed up. I did comment to her that I never did any of that and I was happy to accept where they put me and whatever chair etc.
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What happens if you talk to yourself?
I usually get a more reasonable and intelligent response.
:rofl; :rofl; thanks for giving me a laugh at this difficult time.
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You are "not allowed" to needle yourself?? They are going backwards instead of forward
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Hi, I've never been on PD, I've been on HD since december '07 so realy can't compare.
I usually read books, watch tv, or, as I'mdoing now, I surf the WWW. I also eat during HD. ut yes, times does not fly when on HD.
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How i wish we could tie all those people who set the rules up, in our chairs and some of the nurses as well (though none at my new temp unit as they are all decent) I would love them to do a week of dialysis ( i would say longer but dont think they would last a week!) Just because they've read the book doesnt mean they know what its like.
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when I talk to myself -- I am asked to be quieter
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There is no reason dialysis cant be a social event. Its no night out with your friends , but you see the same people everyday and get to know something about them. I understand the machines need attention and loud conversation can mask an alarm, but you can only really talk to both you neighbors anyway. Those grumpy old guys with the earphones on are having the same troubles as you are. In my unit we greet each other and get the news over before we settle in for treatment. Maybe the VA hospitals are different. Im sorry you have to deal with that system.
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I come to make amends for some of my previous comments. Of the rules twirl gave from her unit the only one posed to me was the "no choise of stickers" plus my own which were "no buttonhones" and "no sticking yourself. None were valid in my unit such as eating, talking, etc. Today I asked the powers that be and was told there were no such rules intended.
That leaves the "sticker" quesion. Only techs are allow to stick and nurses do the catherers. Seems backwards to me, but what do I know. Kevin is our head floor nurse. He agreed my nurse Tan could continue sticking me unless I wanted a specific tech. He said he'd make the good ones wear special hats. (lol)
Many of the techs are excellent and most I like. Unlike other centers, this one is so large that many of them I've never seen. I expressed, without calling names, that some of them were truly goofoffs and dodos.
As to the button holes I was told that the nurses don't like to do them but if I insisted (when the time comes) he will assign someone like Jamie to me. He, Kevin, likes them as do my neph and my surgeon.
I jumped to conclusions and want the record straight. I still like most of them~~.
Twirl, I hope you had an equally good resolution.
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:clap;
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Have you asked about NXStage?
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I haven't started yet but I know it's going to be really tough. I cant even stand going to the neph as much as I have to, for all the blood work, etc.
I am on a bi weekly schedule for Aranesp. It seems I am always in that office. The doctor needs to see me at least once a month and he always has some test he wants me to do. It seems there is no relief and I would LOVE to be left alone for a few days.
If this bothers and depresses me, how on earth will I ever be able to stand dialysis, maybe for 5 hours at a time?
I have thought about it and figured I could just try and remove myself emotionally and go through it without thinking. I don't know how that will work. LOL
I am beginning to have nasua most days and have to force myself to eat. I wonder how much longer i have to go.
I am in awe of all of you!
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Beachlover, It is bad. But not as bad as we imagine it to be. There are ups and downs. The blood is disgusting but you can train your self not to look. Make friends with the really nice people and try getting rid of the nasty ones. (joke)
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Kickstart are you going to get a fistula placed......
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Kickstart are you going to get a fistula placed......
Not if i can help it ! :rofl; No seriously in time i will have one done and my pd cath taken out.
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Kickstart I feel for you. I too would be feeling the same way if I had to go to hemo. Right now I am on PD and it's way way better than hemo in my book. Jail is a good way to describe hemo. I would have to give up so much if I had to do hemo.
I wish you could get a transplant.
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Thanks Brightsky , i would go back to PD like a shot if i had a chance. I really do hate hemo. A transplant isnt an option to be honest because i dont have the support of my family , they think i can go in one day , have a transplant , home next day ..sorted/cured . This is what im up against !
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I'm wondering whether dialysis will make me feel sick while I am doing it? I'm nauseas now and it will probably only get worse. I am sort of forcing myself to eat but I am losing weight.
It would seem to me that dislysis is a big thing for the body to get used to. How do you feel when you are on the machine? I am worried.
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Twirl, you're joking, right?
Twirl is NOT joking. Her FA is a control freak. I tried to intervene. :banghead;
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Beachlover, I'm sure you'll get as many different responses as their are responders. I doubt it is the same for your experience, whici will be unique. I do in center hemo and I was not sick at all when on the machine. Sometimes now I have a little nasuea but I take it with me from home (I've never liked eating breakfast and it kind of makes me sick). A little malox that they will give me straightens it out. I was sleepy for a long time (after sessions) ... not tired. Just sleepy. I did lose a good deal of weight right before dialysis but that was mostly all fluid. Did it with just lasix... and I don't really like food for the most part although I am not on the renal diet as of yet because of the labs. I think you will actually feel better once you start. I chose the hemo in center for some very personal and specific reasons. I had to do an analysis of ME to make that decision. It is right for me and wrong for m any others. They messed up my fistula a couple of time but I fixed it by yelling, screaming and cursing.
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Beachlover .. dont worry everyone is different , i dont want to worry you. I think its worse for me because i was doing PD for years before this , which although is everyday is a lot kinder to the system and i think my body got so used to it ,its now in shock at how quickly hemo does things to it ! Maybe its better for people who go straight to hemo? I never wanted to do hemo though, if its possible to like dialysis then i was happy on PD , i plodded along steadily on it with none of these side effects or headaches.