Dialysis over Transplant

[ToddB0130]

Talking to my nurse/case manager from my insurance company on Friday and she mentioned that there are people who choose to remain on dialysis rather than go through a kidney transplant (she wasn't talking about people who couldn't get a transplant for whatever reasons)

Anyone on this board in that situation ?  I'm curious as to why.  Is it a fear of the surgery ?  The concept of accepting an organ from another person (either living or cadaveric donor) ?

I find it an interesting choice and would appreciate any feedback.    THANKS

[Rerun]

I have a friend who has been on dialysis 25 years because she never wanted to take the anti-rejection drugs.  She is fine but I feel like she missed out on a good part of life she could have had with a transplant.

I had one transplant that lasted 17 years but I'm not going to try for another one.  My antigens are really high and I don't want to spend year after year taking all the bullcrap tests to stay on the list.  Also, since I'm on a disability from the Federal Government if I get a transplant I'm "cured" and they kick me off disability and social security in 12 months.  I'm 50 years old and am not that confident that I could find a job with benefits.  Just the facts.

                   

[MaryD]

I choose not to have a transplant.  I figure that someone younger could probably make much better use of any available kidney.

I am 69.  If I can get 10 years out of dialysis, I will be quite content.

[Marsh]

I have been on dialysis since February.  I am on the transplant list but as of now, I don't want one.  I have had multiple surgeries and am not looking forward to another one.  I'll make that decision when(if?) the call comes.  I've been listed for 1.5 years.  Also, after the transplant, I would have to go back to work and I'll be 60 yo in a couple of months!!!!

 

[amanda100wilson]

On the converse side, although I have a high PRA ( panel reactive antibodies) level making a further transplant highly unlikely, I am not only on a local transplant list bu also on the pooled donor list at John Hopkins Hosp. InBaltimore.  I am 48 years old but have a 23 year history of ESRD.  Were I coming to this new with problems making a transplant difficult, I would probably consider carefully whether to go on the list.  The way I see i though, is that a transplant may well 'buy' me some extra years that dialysis may not, given the time that I have spent on dialysis, since dialysis and the limited cleaning of toxinscompared to that done by normally functioning kidneys is limited .  I think that my decision-making process has also to do with my circumstances.  Were my family all grown up then  i may think differently, but I have a 10 year old son.  Anything that optimises my chances of being around at least  until he becomes an adult, I will definately go for.  Even with the advent of NxStage and the opportunity to get better outcomes because of it,  there is still nothing comparable to having a good, functioning kidney transplant.  I know that the meds. Have side effectts, but weighing that up against the side efects of doing dialysis, having to take Epo, binders, hectorol and sensipar and of course, the fact that toxins arenot removed so well, I would still favour a transplant over dialysis.  Essentially, it is something that is a very personal decision and as I hope my post demonstrates, isbased on many different factors

[willowtreewren]

Todd,

Carl was "only" on dialysis for about two and a half years, doing NxStage at home. He did VERY well on diaylysis, had lots of stamina, and generally good health.

We talked quite a bit about whether transplant would be a good option considering all the things that COULD go wrong and all the meds with their less than pleasant side-effects. I had actually privately decided that it might be better to simply continue dialysis and not worry about getting a transplant.

And THEN the call came, so unexpectedly, so alarmingly (thinking it was a call about his sister's dying of ESRD) in the middle of the night. All that discussion went out the door while the transplant came in.

And while we THOUGHT Carl was doing so well with dialysis, we now realize just how much better he is and how much healthier since the transplant. True, he is more prone to colds, and other issues, but his color is now a healthier hue. But most importantly, we have so much of life back.

I realize that we have been fortunate in all things. I am truly, truly thankful for the transplant.

Aleta

[Henry P Snicklesnorter]

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[cariad]

I considered staying on dialysis and not getting a second transplant, but was advised repeatedly to accept my husband's offer of a kidney. I did very poorly on dialysis as a child, although I was not on it long enough to properly stabilize. My first transplant lasted me 34 years, allowed me to have two children and escape the nightmare of growing up in a hospital.

I don't think it's a question of fear of the operation for most, it seems to be more about 'if it works, why fix it'. You should read Zach's story if you want to read about someone who chose an unconventional route and has done exceedingly well with it.

[Desert Dancer]

I have no desire whatsoever for a transplant. I'm on nocturnal dialysis and the outcomes for this modality are equivalent to a cadaveric transplant. I have a perfectly normal life. If it ain't broke why fix it?

My two main reasons for not wanting a transplant are:
1) the immunosuppresents, and
2) the evaluation and listing process

The drugs you must take post-transplant are nasty, nasty drugs. They cause diabetes, cancer and transplant rejection just for starters, not to mention the miserable - sometimes debilitating - day-to-day side effects. On top of all that, I have no way to pay for them once the 36 month window has closed, so why the hell bother if I'm just going to have to go back to dialysis anyway?

From everything I can gather about the evaluation and listing process, it's intrusive, invasive and can be humiliating. God forbid someone on the team take a dislike to you and decide to call you non-compliant or some other bullshit. I simply do not have the temperament to bow and scrape and try to prove my worthiness.    I'll have no truck whatsoever with psychologists or social workers because in my experience they pathologize everything and think they know you after two minutes' conversation. I'd be inclined to tell them to kiss my    and I don't think that'd go very far toward getting me on the list.

Mind you, I only feel this way because I do nocturnal dialysis at home and have everything just the way I want it. If I had to be on conventional in-center I'm certain I would work toward being listed.

So yeah, transplant may be considered the 'Cadillac' of treatment options, but I'm perfectly happy with my Buick.

[The Noob]

what desert dancer said..all of it.

but, i'm not the one on dialysis. we're doing Nxstage now and it is going extremely well. even so, DH still wants a transplant. its my son in law who wants to donate. i have many mixed feelings about this. he is young and healthy and wants to donate. DH wants a transplant and be off dialysis.
but this is the father of my future grandbaby, i love him dearly. i can't ask him to do it, not sure i want him to do it.
it would be much better if DH family would get on board and one of them donate. they don't care about the sacrifices any of us have to make, as long as its not one of them making them. then when its all done, they will most likely want to waltz in and its all downhill for them then. i don't know. we are discussing this. i am against it, but again, i am not the patient. my 2 cents is try to get his family on board, or wait on "the call". he is doing well on home hemo. we are middle aged and the thoughts/discussion of what we'd do after a transplant and he is facing getting kicked off disability/medicare and trying to find a new job with good insurance..both of us.
living donation is such a tremendous gift, i'm scared for him, i love him, i want the right decision.

[Whamo]

I am starting to seriously consider taking myself off the transplant list.  Most transplants don't last.  My cousin's husband had a liver transplant a few years ago, and he's dying today.  I speak to others at my dialysis center, and some of them had transplants that failed, and they had to come back to dialysis anyway.  Why put yourself through the aggravation? 

[cariad]

I am starting to seriously consider taking myself off the transplant list.  Most transplants don't last.  My cousin's husband had a liver transplant a few years ago, and he's dying today.  I speak to others at my dialysis center, and some of them had transplants that failed, and they had to come back to dialysis anyway.  Why put yourself through the aggravation? 

What I would say to this is first, you cannot compare kidney and liver transplants. That is another universe entirely. The stats are pretty straightforward with kidney - 50% of kidney patients have a functioning cadaveric transplant at roughly 12 years, 50% have a functioning live donor transplant at 25 years. (There's a bit more to it than that, but those are the basics). Any transplant received today could very well be the bridge to the artificial kidney. It's not that "most transplants don't last" because no transplants last, no organs last. It's your definition of 'last' that matters. Last to the end of your life, last a decade, last 50 years? I hate dialysis enough to be willing to take the risks, and I have a very positive history with transplant to look back upon. If dialysis is not a major hardship in your life, then I can completely understand keeping with the devil you know.

what desert dancer said..all of it.

but, i'm not the one on dialysis. we're doing Nxstage now and it is going extremely well. even so, DH still wants a transplant. its my son in law who wants to donate. i have many mixed feelings about this. he is young and healthy and wants to donate. DH wants a transplant and be off dialysis.
but this is the father of my future grandbaby, i love him dearly. i can't ask him to do it, not sure i want him to do it.
it would be much better if DH family would get on board and one of them donate. they don't care about the sacrifices any of us have to make, as long as its not one of them making them. then when its all done, they will most likely want to waltz in and its all downhill for them then. i don't know. we are discussing this. i am against it, but again, i am not the patient. my 2 cents is try to get his family on board, or wait on "the call". he is doing well on home hemo. we are middle aged and the thoughts/discussion of what we'd do after a transplant and he is facing getting kicked off disability/medicare and trying to find a new job with good insurance..both of us.
living donation is such a tremendous gift, i'm scared for him, i love him, i want the right decision.

Ah, Ms. Noob, please tread lightly here. As you wisely pointed out, you are not the one on dialysis. You have two adults entering in to this with eyes open, I think for your sanity and theirs, you need to let them do as they will.

[del]

This is the same way hubby feels.  I am a match but only 1 antigen but he wouldn't take a kidney from me anyway because he is to scared of something happening to me.  Hubby is on nocturnal as well and he feels fine.  he cuts his own firewood, does all of the work around the house, has built 2 sheds and 2 boats(since being on dialysis).  He gets up about 8 each morning and in bed about 10:30 at night.  We also live in Newfoundland and transplants are not done here.  You have to travel to Halifax or Ontario in order to get a transplant.  That means a long time away from home and family.    Hubby has told the nephrologists  (and they agree with him) why fix something that isn't broken.  He says as long as he is doing well with the nocturnal he won't even consider a transplant.

I have no desire whatsoever for a transplant. I'm on nocturnal dialysis and the outcomes for this modality are equivalent to a cadaveric transplant. I have a perfectly normal life. If it ain't broke why fix it?

My two main reasons for not wanting a transplant are:
1) the immunosuppresents, and
2) the evaluation and listing process

The drugs you must take post-transplant are nasty, nasty drugs. They cause diabetes, cancer and transplant rejection just for starters, not to mention the miserable - sometimes debilitating - day-to-day side effects. On top of all that, I have no way to pay for them once the 36 month window has closed, so why the hell bother if I'm just going to have to go back to dialysis anyway?

From everything I can gather about the evaluation and listing process, it's intrusive, invasive and can be humiliating. God forbid someone on the team take a dislike to you and decide to call you non-compliant or some other bullshit. I simply do not have the temperament to bow and scrape and try to prove my worthiness.    I'll have no truck whatsoever with psychologists or social workers because in my experience they pathologize everything and think they know you after two minutes' conversation. I'd be inclined to tell them to kiss my    and I don't think that'd go very far toward getting me on the list.

Mind you, I only feel this way because I do nocturnal dialysis at home and have everything just the way I want it. If I had to be on conventional in-center I'm certain I would work toward being listed.

So yeah, transplant may be considered the 'Cadillac' of treatment options, but I'm perfectly happy with my Buick.
[/quote

[Desert Dancer]

What I would say to this is first, you cannot compare kidney and liver transplants. That is another universe entirely. The stats are pretty straightforward with kidney - 50% of kidney patients have a functioning cadaveric transplant at roughly 12 years, 50% have a functioning live donor transplant at 25 years. (There's a bit more to it than that, but those are the basics).

My father had his transplant for 17 years and he had his transplant in 1985 - well before they had some of the newer immunosuppresants and at a time when they relied heavily on prednisone. He'd probably still be going strong if he hadn't died in 2002 (of a heart attack).

[RichardMEL]

I think, rather than going on isolated anecdotes, that it is best to look into statistics on this issue to try and be a little more unbiased about the whole thing.

Now I have only been able to do a quick search, but this section/page from the NHS in the UK gives a general idea: http://www.uktransplant.org.uk/ukt/statistics/transplant_activity_report/current_activity_reports/ukt/survival_rates_following_transplantation.pdf

it certainly is very close to the kinds of figures I was told - and if you look at the UK figures, the rates actually have improved in the past 10+ years.. however if the donor is living, or deceased, you're looking at >90% survival rate in the first year, and not that much less for 5 years and goes down to ~70% for 10 years. Basically your kidney either rejects or fails in the first year, or all things being equal should go on for some time.

Of course there are lies, damn lies and statistics, and for every transplant that last 20+ years, there's one that will go after 2 or 3 - that's the risks you take. Heck, it's the risk *I* am taking right now!! I'll tell you from my perspective of just under a year in it's already worth it!!! If it failed tomorrow it's still been worh it..

Having written all that I want to state that everyone is different! Everyone has a different personal situation and goals etc. Some do very well on D and it suits them to stay that way, others do not. Everyone's views and personal choices are their own and should be respected - I certainly wouldn't try and talk anyone out of a choice to not go for transplant - it IS a huge risk (as is staying on D) and a very personal choice.

[okarol]

I agree with Richard - everyone is different and the same treatment is going to have varied results for each patient.
Than being said, my only experience is watching 2 people I am close with and how they handled dialysis vs transplant.
Jenna and Lori Hartwell both seemed more tired, less able to focus and it was hard to predict from one treatment to the next how they would feel. I would characterize it as inconsistent, but in both cases they were often wiped out after dialysis. As an observer, following each of their transplants, I witnessed a gradual but dramatic change in their moods, reasoning and coping. It seemed as though a stressful fog had lifted, and their energy improved. In both cases they had no post-op problems, no disturbing side effects from meds, and both received kidneys from living donors. Again, this is from someone on the outside watching it happen, so the outcome could be different in numerous ways.