Why do you hate dialysis?

[payats]

I'm just wondering why most of the people hate dialysis?
Are we not thankful that dialysis was invented by a genius person
and now we are surviving and enjoying life?

I know that long term dialysis patient is faced with long term changes in lifestyle, everything,
and that everyones future depends on medications,fluid restriction,dietary restriction,dialysis
so,tell me what do you really hate in dialysis?

[Rerun]

I know that long term dialysis patient is faced with long term changes in lifestyle, everything,
and that everyones future depends on medications,fluid restriction,dietary restriction,dialysis
so,tell me what do you really hate in dialysis?

DHA........

[kitkatz]

Just about everything!

[angela515]

I'm sure everyone is grateful for the fact that dialysis was invented... but that dosn't mean we can't hate it. I personally hated hemodialysis because I felt "icky" all the time, and very weak and tired. The fluid restriction was horrible and I would almost always bottom out each session, which feel's crappy and sucks. I would always drink too much fluid and have alotof weight to take off each treatment... I hated going all the way to the center to arrive 10 minutes early for my scheduled time and almost always having to be put on late due to other people being late. I hated being poked by the needles, I hated the fact that i had to have a cath in my chest 90% of the time because my little veins are worn out and can't get a graft or fistula to work in my arms. Once the doctor's told me they were going to tryto put a graft in my upper thigh, I said screw this, find me something else. That's when I found out about PD. Now I feel way better, I don't really have a fluid restriction, I still have to watch my phosphorus but I can eat all the protein and potassium I want. I don't have to do dialysis on anyone else's schedule, i do it while I sleep. I can travel whenever I want, I just take my stuff with me. Do I still hate dialysis? Yah, I do.... but I do feel grateful it was invented.  

[Rerun]

OK....lets see.  Lifestyle change, constant medication, fluid restriction, diet restriction, have already been mentioned.

SO IF THAT ISN'T enough.....    How about two 15 gage needles stabbed into your arm, leg, back (where ever) three times a week, freezing to death three times a week, putting up with stupid nurses and techs and doctors who don't listen to you and treat you like a moron.  Constant appointments with other specialists (heart, skin, vascular....)  How about trying to stay healthy enough to stay on the transplant list.  How about knowing your life exists only as long as you have a good access.  How about watching $40,000 a month going out the window.  How about dialyzing on THANKSGIVING!!!

I'm not thankful for the ass hole who came up with dialysis.  But, because of him I have to keep trying because no one will understand if I quit.  I would be thought of as a quitter and suicide victim.   

[angela515]

nevermind

[Bette]

I hate feeling crappy all the time on hemo.  I hate watching nurses talk to ADULT patient as if they are 5 years old.

I hate having a permacath and a CAPD catheter put in the same day which hasnot allowed me to take a shower in 2 months.  Sponge bath suck!! 

I hate all the docs asking me when I'm going back to work.  I'll go back when I don't feel like crap!!!!!

I hate spending all my extra cash on medication co-pays.

[Epoman]

I'm just wondering why most of the people hate dialysis?
Are we not thankful that dialysis was invented by a genius person
and now we are surviving and enjoying life?

I know that long term dialysis patient is faced with long term changes in lifestyle, everything,
and that everyones future depends on medications,fluid restriction,dietary restriction,dialysis
so,tell me what do you really hate in dialysis?

Have you not read ANY of the threads on this site? As this has been discussed in several various threads. Hating dialysis and being grateful are two different things entirely. I hate dialysis, but I am very grateful it was invented (sorry Rerun ). Just as a cancer patient does Chemo to survive, we do dialysis to survive, don't you think the cancer patient hates chemo but is grateful that it might save their life?  Living on dialysis is a terrible way to live and please don't say "then why not get a transplant?" because a transplant is not a cure and is just another type of treatment. I hate living hooked to a machine, I hate being in a wheelchair due to kidney failure, I hate having 2 broken hips that will never heal due to kidney failure, I hate having one of my vocal cords damaged due to kidney failure, I hate having my arm disfigured due to kidney failure, I hate the emotional trauma that has been done to my mental state, after all that I am still very grateful that I am able to watch my son grow up due to dialysis.

- Epoman
Owner/Admin

[babi68]

hmm, this one got me thinking.... well firstly I must say thankyou to the genius who invented dialysis. Without it I wouldn't see my children grow up.
Now what I hate about dialysis. It took my mum away from me when I was 6. She was 28, she developed an aneurysm because dialysis was done through a shunt in her ankle(this no longer gets done, because of complications). I hate feeling like crap, I hate having to sit in the chair for 5 hours, I hate not being able to have the energy to go riding with the kids, I hate the bloody needles, I hate having to wait for a transplant, I hate the caltrate tablets I need to take, I hate not being able to drink. I hate it all, but as we all know it is a love/hate relationship with our dialysis. I want to give up alot of the time, but my children keep me going. I know what it is like to live without a mother so I keep on going and going.... Sorry to ramble. Liz

[Joe Paul]

Mostly, I hate having to watch older people suffer.

[Rerun]

Mostly, I hate having to watch older people suffer.

I hate that too because I see my future if I stay the course.

[tamara]

I'm just wondering why most of the people hate dialysis?
Are we not thankful that dialysis was invented by a genius person
and now we are surviving and enjoying life?

I know that long term dialysis patient is faced with long term changes in lifestyle, everything,
and that everyones future depends on medications,fluid restriction,dietary restriction,dialysis
so,tell me what do you really hate in dialysis?

So here we have a dialysis worker of all people asking us why we hate dialysis.

I HATE DIALYSIS BECAUSE OF PEOPLE LIKE YOU HAVING TO ASK US WHY  WE HATE IT.   

IT'S SELF EXPLANATORY.

THAT'S ALL I HAVE TO SAY. (if i say anymore i might say something that will incriminate me lol) 

[AlasdairUK]

I'm just wondering why most of the people hate dialysis?
Are we not thankful that dialysis was invented by a genius person
and now we are surviving and enjoying life?

I know that long term dialysis patient is faced with long term changes in lifestyle, everything,
and that everyones future depends on medications,fluid restriction,dietary restriction,dialysis
so,tell me what do you really hate in dialysis?

Have you not read ANY of the threads on this site? As this has been discussed in several various threads. Hating dialysis and being grateful are two different things entirely. I hate dialysis, but I am very grateful it was invented (sorry Rerun ). Just as a cancer patient does Chemo to survive, we do dialysis to survive, don't you think the cancer patient hates chemo but is grateful that it might save their life? Living on dialysis is a terrible way to live and please don't say "then why not get a transplant?" because a transplant is not a cure and is just another type of treatment. I hate living hooked to a machine, I hate being in a wheelchair due to kidney failure, I hate having 2 broken hips that will never heal due to kidney failure, I hate having one of my vocal cords damaged due to kidney failure, I hate having my arm disfigured due to kidney failure, I hate the emotional trauma that has been done to my mental state, after all that I am still very grateful that I am able to watch my son grow up due to dialysis.

- Epoman
Owner/Admin

I think Epoman sums it up. I am very thankful to Willem Kolff and his invention, but some days I wish I did not have to go to hospital after work to have dialysis. Instead I would rather go to a gig, pub, movie with my friends. I realise that we all have our own burdens in our life that we need to adjust to, but it does not mean that we need to like them.

It is a fair question from a health care worker to gain empathy to our needs.

So here we have a dialysis worker of all people asking us why we hate dialysis.

I HATE DIALYSIS BECAUSE OF PEOPLE LIKE YOU HAVING TO ASK US WHY  WE HATE IT.   

IT'S SELF EXPLANATORY.

THAT'S ALL I HAVE TO SAY. (if i say anymore i might say something that will incriminate me lol) 

Why is it SELF EXPLANATORY? How do you expect people who do not have the disease to understand if we are sarcastic towards them. I wish more health care workers would ask what do you hate, what can I do while you are in the centre to make you more comfortable. ie. If you are cold I can turn the temperature of your dialysis fluid up.

Fixed Quite - Rerun - Moderator

[Ken Shelmerdine]

Umm
Haven't really been doing it (PD) long enough to be completely sick of it yet. Also I'm lucky in that I still feel as well as I did before dialysis so it's not too much of an  effort. The only thing that has me climbing the walls at the moment is the one minute hand wash. Isn't it just the longest minute ever! If I spent most of my life doing one minute washes I think I'd feel  like I'd lived a very long time.

[scyankee]

How many people would you think would like dialysis??
Just sit still for 4-5 hrs with pain in your arm the whole time.  Yeah, I can see how "happy" everyone
is at my center.  Have soooooo much to look forward to in my future.
Thanks, but no thanks.

[payats]

I have a friend she is a nurse works in the ER full time and doing hemodialysis and she feels the same way too, like most of you, hating everything about dialysis.
I am not a moron asking you this question, each of us react and cope in a chronic disease in different way and I am not here to argue about these things, I want to learn what you really feel, so that I can care for you in a way you want to.

[angieskidney]

I love to live, but I hate that I have never had a "normal" life. I love to drink and can't. I love milk and can't have it. I love my freedom and to be able to work hard and earn a lot so I can get married. But I can't work so much as I do HD 3 times every week. I hate how I have been "crashing" lately on dialysis. I am tired of my BP going below 100/60. I am fine if it is that but when it starts dropping it goes FAST! I hate my ears popping! I hate the major cramps that come back just as you think they go away even with the UF turned off temporarily. It is not so bad I guess and I am greatful! It could be worse! But think about it from my point of view. I am only 33. Waiting for my 2nd transplant. Transplants don't last forever. How many can I have in a life time? How long will the wait be each time? I will have so many antigens that I probably will be waiting years. (this time around it has already been 5 years .. will be 6 in 2007...).  I am tired of stressing over every little thing just so that I can stay alive.  Also the fact that my arms aren't the best. How long will my fistula last this time with those 15 gauge needles and them still not doing button hole like they promised me?

I saw a quote once .. and I LOVE it! Who said it?

I dialysize to live or live to dialysize? (I forget exactly how it goes)

[DeLana]

I'm of course fortunate to not be on dialysis, or even a CKD patient; but I know - from having worked in a clinic for 5 years - that I would hate dialysis too.

You posed a good question, and the more often this topic gets discussed, the better.  I try to learn as much as possible from patients and this is a great site for it.

DeLana   

[glitter]

I hate watching my husband suffer through infiltrations,and big giant needles...I hate watching him puke so hard it hurts his chest...

I hate the lack of sympathy-empathy the staff shows, to how profoundly this affects families.......I hate the 'get them in-get them

out' mentality....I hate it when the gripe at him about his fluids- then laugh and say "well I could never live without my Pepsi!!!"-like

 my husband has a choice-besides dying..

.I hate the fact that ES RD is so much more then 'just' dialysis-what happens in dialysis affects your WHOLE life....

I hate smart-mouth nurses who are healthy....................i hate smart-mouthed nurses who are sick............i hate indifferent Dr.

who charge for 'services rendered'- even when you don't know what they did-cause they never talk to you ......

I hate when Dr's and nurses make changes to my husbands routine-med schedule etc. and don't tell him before they try to implement

 it-after the fact.......(probably my number 1 hate)

i hate dialysis because it is now our life-but i am grateful i get to have a life with my husband at all-

[Rerun]

Umm
Haven't really been doing it (PD) long enough to be completely sick of it yet. Also I'm lucky in that I still feel as well as I did before dialysis so it's not too much of an  effort. The only thing that has me climbing the walls at the moment is the one minute hand wash. Isn't it just the longest minute ever! If I spent most of my life doing one minute washes I think I'd feel  like I'd lived a very long time.

ONE MINUTE??  It use to be 3 (THREE) minutes!!!  That was 20 years ago.  I would wash and wash and wash!  AHHHHHHH   

[kitkatz]

Go see my rant I Hate Dialysis in general discusion.

[Ken Shelmerdine]

Umm
Haven't really been doing it (PD) long enough to be completely sick of it yet. Also I'm lucky in that I still feel as well as I did before dialysis so it's not too much of an  effort. The only thing that has me climbing the walls at the moment is the one minute hand wash. Isn't it just the longest minute ever! If I spent most of my life doing one minute washes I think I'd feel  like I'd lived a very long time.

ONE MINUTE??  It use to be 3 (THREE) minutes!!!  That was 20 years ago.  I would wash and wash and wash!  AHHHHHHH   

Rerun, Here in England it's one minute. Maybe it was 3 minutes here at one time.

[jbeany]

I haven't started dialysis yet - but I've been in kidney failure for a decade, and I've been diabetic for 23 years.  There's plenty to hate about chronic illness. . .

I hate that I'll never be truly independent.  I hate that I can't work to support myself.  I hate being broke.  I hate that my husband and I can't have the things we want because a huge chunk of the monthly budget goes for medical supplies.
I hate having to think about every bite I take.  What's the carbo count?  How much sodium is in it?  How much fiber? Will I throw up if I eat this?  Now I get to add potassium, phosphates, and fluid counts to the list of things to worry about.  I hate that I frequently have to pick meals based on how bad the food content is to throw up again.
I hate that I can't ever make any definite plans, because I never know how I'm going to feel in the morning.  I hate knowing that at sometime during the day, the odds are good that I'm going to feel bad.  Either my sugar will bounce, or my stomach will clench, or my head will spin - every day.  It's just a matter of when and for how long.
I hate the doctors who tell you it's your life, your choice, and your decision - and then they don't listen when you choose something, or they fight you when you decide something they don't agree with.  I hate when medical staff stop seeing me as human, and treat me as a disease.  I hate when they treat me like a child even more.

I hate the loss of self-control.

I hate that my body has betrayed me. 

[mallory]

I have a friend she is a nurse works in the ER full time and doing hemodialysis and she feels the same way too, like most of you, hating everything about dialysis.
I am not a moron asking you this question, each of us react and cope in a chronic disease in different way and I am not here to argue about these things, I want to learn what you really feel, so that I can care for you in a way you want to.

Payats, I appreciate you asking the question, and I don't think you're a moron for asking it.  I do hate dialysis, but I'm very glad that it's available to me.  I want to stay alive because I love my family, and I have a job that I really enjoy, and, all in all, I have a very good life.

But, having ESRD, which was caused by vasculitis, has taken a toll on me.  I'm starting dialysis in about two weeks because of the ESRD, and I'm getting chemotherapy monthly for the vasculitis.  The overall effects of the disease and the drugs I've been on for the disease are that I've gained fifty pounds, lost my kidney function and fifty percent of my lung function, I'm weak and tired a lot, and I get quite sick sometimes from all of the medications.

I go to Yellowstone National Park every year for vacation.  It used to be that I hiked all over the place, even the toughest hikes didn't stop me.  Now, just walking over to Old Faithful, a couple of hundred yards, is difficult for me.  I miss that, I miss being able to hike and walk around all I want to.  I don't like it that I have to think about everything I do and wonder if I'll be able to make it or not.  I'm not old and I don't want to feel old, yet.

This is going to sound so vain, and completely ironic coming from me, but I also just hate what ESRD and vasculitis have done to my body.  I wasn't ever skinny, and I'm short, so I've never looked like a Victoria's Secret model or anything, but, the other night I was watching TV and I saw a Victoria's Secret advertisement about "what is sexy?" and there were all these tall skinny girls in the ad.  Let me just say, it was pretty clear none of them had a peritoneal catheter.  I think I can safely say; dialysis, and the effects of Prednisone, are not sexy.

There are the diet restrictions and the fluid restrictions, but I can live with that.  I wish that I could feel like I used to feel.  I wish that I could make long-term plans without wondering if I'll be alive or not.  I wish I didn't worry about the financial aspects of this disease all the time.  I wish my family didn't have to worry about me, and didn't have to feel like they need to give me a kidney. 

I do hate dialysis, but I am thankful for it.

[angieskidney]

Umm
Haven't really been doing it (PD) long enough to be completely sick of it yet. Also I'm lucky in that I still feel as well as I did before dialysis so it's not too much of an  effort. The only thing that has me climbing the walls at the moment is the one minute hand wash. Isn't it just the longest minute ever! If I spent most of my life doing one minute washes I think I'd feel  like I'd lived a very long time.

ONE MINUTE??  It use to be 3 (THREE) minutes!!!  That was 20 years ago.  I would wash and wash and wash!  AHHHHHHH   

Rerun, Here in England it's one minute. Maybe it was 3 minutes here at one time.

It was 3 min in Canada too .. but like Rerun said .. it was years ago. For me it was 16 years ago.

... man i am not looking forward to Sandman going home in a few days .. I hate how even though my alarm alarms on my machine the nurses just ignore me and it. I know they are busy but if I don't get it in a timely manner maybe I really do NEED a nurse? They just assume I don't need any help because I am young. Lately (the last 3 times) I have been crashing .... I am sooooo glad Sandman was there and today my mom was as well!!