Daily dialysis outcomes rival a cadaveric kidney transplant

[stauffenberg]

It is interesting to compare the evolution of diabetes therapy with renal therapy.  In both cases, the initial phase saw both patients and the medical profession praising the treatment -- insulin in the first case and dialysis in the second -- for its wonderful, life-saving quality.  Patients were grateful to this marvel of modern medicine for saving their lives. 

But then, in the second phase, as patients and a very few enlightened physicians recognized, the treatment itself came to be seen as the problem.  Life on injected insulin was disrupted and dangerous; life on dialysis was onerous and burdened with medical complications, so the patients came to hate insulin and dialysis, rather than regarding them primarily as salvation from death.  Thus you have today in diabetes the group, "Society for an Insulin-Free World," which instead of praising injected insulin hates it as a primitive therapy for diabetes which has to be overcome.  In renal medicine you have the group, "I Hate Dialysis," which has come to hate not renal disease but the onerous treatment which is its modern manifestation.

The counter-attack against these movements in diabetes and renal medicine has been for the forces of conventional medicine to insist that everything would be better if only the hated treatment were applied ten times more onerously than it has been in the past.  So in diabetes you now have intensive blood sugar control with patients pin-cushioning themselves to death by perpetual blood sugar measuring and insulin injecting until there is nothing left of their lives free of medicalization.  In renal medicine you have the exact parallel of everyday dialysis, medicalizing every single day of the patient's life in order to make it better, at least in the view of the people who will never have to go through this type of treatment themselves.

The fact remains, however, that in both of those diseases, the treatment has itself become the disease.  People don't say as often that "I am a renal patient" as they do "I am on dialysis." 

[Adam_W]

I don't think anyone here is saying they "love" dialysis. Everyone who is on it (except maybe some extremely weird people) hates it. I know I do, but it's just the fact that we NEED it that makes us hate it. I am extremely grateful for this "primitive, intrusive treatment" because it allows me to live. Ultimately, it's ESRD itself that I hate. This being said, this will probably be my last post in this thread. Staufenberg is obviously too closed minded to realize that everyone is different and dialysis may be just right for some. Oh, well.

Adam

[okarol]

I hate exercise, but I still do it. I hate obeying traffic laws, but I am glad they exist, and I do my best. I am not crazy about eating vegetables. I would enjoy smoking if it wasn't deadly. There are so many things we do that we "hate" because it's prolonging our lives. That's life, get used to it!

[Zach]

Sorry folks.  I, for one, do not hate dialysis.

Hate takes too much energy to sustain.  I'd rather put that energy to good use:  my work.

Can I still be a family member of IHD?
 

[okarol]

Sorry folks.  I, for one, do not hate dialysis.

Hate takes too much energy to sustain.  I'd rather put that energy to good use:  my work.

Can I still be a family member of IHD?
 

I vote "YES!" 

[Zach]

 

[Hemodoc]

Dear monrein,

Yes, to define "dismal" in terms of Bill's dog vs croc is quite dismal indeed and I would readily have to admit that even the most "dismal" stats on retransplantation are much better than what appears for Bill's dog.

As far as the decision for individual retransplantation risks and benefits, several factors should be considered.  Living vs cadaveric is better as in primary transplantation.  Secondly, I should modify the term dismal as "historically dismal" since as in all areas of medicine, much progress has been made here as well, yet the facts are that the second transplant has a lower graft survival in general than a primary graft.

I have done a quick search and I am actually surprised to have a relative paucity of published studies on second or even third graft survival rates.  However, I suspect that your transplant center has unpublished data on this issue and as in all individual cases, discussing this as part of the informed consent procedure with your own transplant surgeon is where you should go for the best information with someone that likewise knows all of the details of your case and can put together the risk/benefit and alternative profile that should be a part of any medical decision.  You may find that you still like the odds of a successful second transplant and again, I am not here to deter anyone from what they believe is in their best interest, but I truly believe in a true informed consent where as much as is possible all issues are discussed openly and honestly and without bias as much as possible.  Bias is very hard to overcome and I am sure that the transplant surgeons will most likely tell you that transplant is better in ALL cases, where that may not necessarily be the case.

You should really know that surgeons like to operate so take that bias into consideration as well especially when they have a probablity of a high rate of success.  This is even more true at an academic medical center where young fellows are seeking to get as many operations done since that is one of the requirements to pass their boards.  Surgeons and internists have a different path where surgeons to become board certified must present a list of the surgeries that they have performed during and after finishing their fellowship.  It truly does take a bold person to complete and do well in this field and my hat is off to them.  We do have some very talented people doing renal transplants across our nation.

Nevertheless. Here are a couple of studies that I was able to find:

1)  Repeat organ transplantation in the United States, 1996-2005. - Magee JC - Am J Transplant - 01-JAN-2007; 7(5 Pt 2): 1424-33 (From NIH/NLM MEDLINE)

https://ive-crdc.kp.org/das/citation/body/94915516-4/jorg=journal&source=MI&sp=19610020&sid=706193037/N/19610020/,DanaInfo=www.mdconsult.com+1.html?issn=1600-6135

2)  Living-donopr kidney retrnasplantation: risk factors and outcome (Egypt)

http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1464-410X.2004.04934.x

3)  Factors influencing second renal allograft survival

http://ndt.oxfordjournals.org/cgi/reprint/14/3/566.pdf

I hope that this gives you a little bit of information to start your own study on this issue but please also remember that when a study states that retransplantation is better than dialysis, it is the usual, 3 day a week suboptimal dialysis that they are quoting.

May God bless,

Peter

[flip]

Peter...seems like I read somewhere that about 50% of cadaver transplants fail within the first two years. What's your opinion as to the disparity between cadaver and living donor transplants?

[monrein]

Thanks very much Peter for your thoughtful reply.  I was unable to access the first link but no matter, the other two are helpful in guiding the questions I will have when the time comes.  I seem on the surface to be quite a good candidate for retransplantation on a couple of counts.  First we are hoping for a living donor and I have four being tested initially and a couple other back-ups should those not pan out.  Secondly, my first transplant was cadaveric and has lasted over 23 years with no rejection episodes of any kind.  Even now, it is failing due to long-term cyclosporine use not rejection per se and so that is apparently good news on the retransplantation front.

I did well on standard hemo last time but am hoping to improve on that with more dialysis if I can work that out with my team.  Thanks Peter for your help as I navigate the croc swamp.

[Psim]

I'm wondering where PD fits in all this... It's daily dialysis, but I've never heard that it has better results than in centre hemo. Does this mean that home hemo is a better option than PD in terms of life expectancy? Or does it just mean that there hasn't been a study on PD life expectancy yet?

[Hemodoc]

Dear flip,

Sorry to not get back sooner, I believe that the survival stats for living donor vs cadaveric is actually better than 50%.  UNOS and other specific centers have stats for these which I believe are in the 70-80% range at 5 years, but I did not yet get those figures specifically.  So, yes, Stauffenberg is correct that for the right patient, transplant is an excellent option.

Peter

[Zach]

50% in five years sounds like expanded-criteria donor (ECD) kidney failure rates.
 

[BigSky]

The OPTN report gives all the information at to first, second tx and well as a host of other things at time of tx.

http://www.optn.org/AR2005/survival_rates.htm

[del]

My husband DOES NOT hate dialysis!!!  Sure some nights he wishes he didn't have to hook up to a machine but how many people have mornings they wish they didn't have to get up to go to work!!!  He is thankful everyday for dialysis treatments and being able to live a fulfilling life with it. He does not live his life thinking about dialysis or having to be hooked to a machine.  Instead he thinks of dialysis as a part of his life and without it he would have no life.It is just a normal bedtime routine to set up the machine and put needles in his arm. If you look through this board you will se a lot of people that have been on dialysis for lots of years.  My husband eventhough he is on nocturnal home hemo still watches his diet and fluid intake.  Basically we both watch our diet for a healthier lifestyle.

I have asked for studies that have been done on nocturnal hemo and was told there aren't any!!!  It is too new for studies to be done but that people who are on it are doing exceptionally well.  Check out www. nocturnaldialysis.org
Dialysis is a treatment of choice.  What works for one person may not work for another. Some people choice not to have any treatment . That's their choice.

[petey]

I ditto, ditto, ditto every single thing Del said in her latest post (except substitute my husband -- Marvin -- where she spoke of her husband).

Marvin doesn't HATE dialysis either.  Now, he doesn't love it -- although there are days when he says, "I'll be so glad to get on that machine," but he says this because he knows he'll feel better after a treatment.  He didn't choose ESRD, but he got it.  He chose dialysis because he didn't want the alternative.  He chose home hemo (6 x week) because that was the best modality of treatment for him (although we both want to check into nocturnal home hemo).  The three hours he's on the machine each day, yes, he could be doing something else -- if he didn't have ESRD.  But, he does have ESRD and those three hours on the machine give him 21 other GOOD hours in EVERY day.  (And, the other 21 hours, he doesn't think about dialysis much.  He says the other 21 hours are for living life to the fullest.  The dialysis is a small part of his day and his life; it doesn't control him or consume him.)  To him, that's not a bad trade-off.

Marvin started dialysis in March of 1995, and he's been on home hemo since July of last year.  He's doing the best he can (including a GREAT attitude about it) with the hand he was dealt.

To me, it's a matter of accepting your fate, making the best choices for YOU, and keeping a happy spirit about it.  Marvin's famous words are "It could be worse...."

[del]

Petey, how many times have I heard those words come out of y husband's mouth "It coukld be worse" or "there are a lot of people who would change places with me any day"  A buddy of his had a stroke about 5 years ago when he was about 55.  He can't talk or get around very well.  I bet if he was asked to have a choice between doing dialysis for the rest of his life instead of the stroke he would choose dialysis. How often have I said when I know someone has terminal cancer - bet they wish there was something like dialysis for them.  We usually don't think about dialysis either until it is time to hook up in the night. I really thing you and Marvin would really like nocturnal petey!!

[petey]

del, I think we'd like nocturnal home hemo, too.  It's just that it's not offered any where in our area right now.  Hey -- they just started home hemo last summer, and Marvin and I were the second couple trained at the clinic in Wilmington, NC (we had to transfer from our smaller clinic to the Wilmington clinic -- 60 miles away -- just to get in the training!).  Hopefully, it will come to our area soon, and you better believe that Marvin and I will be the first in line!

Petey, how many times have I heard those words come out of y husband's mouth "It coukld be worse" or "there are a lot of people who would change places with me any day" A buddy of his had a stroke about 5 years ago when he was about 55. He can't talk or get around very well. I bet if he was asked to have a choice between doing dialysis for the rest of his life instead of the stroke he would choose dialysis. How often have I said when I know someone has terminal cancer - bet they wish there was something like dialysis for them. We usually don't think about dialysis either until it is time to hook up in the night. I really thing you and Marvin would really like nocturnal petey!!

People look at Marvin kind of strange when he makes the comment that he's "lucky."  He thinks he is truly lucky because dialysis has kept him alive for over 13 years.  We have had quite a few friends and family who have died of cancer, heart attacks, and other terminal diseases in the last 13 years.  Every time we lose one, Marvin says, "I know they'd trade places with me -- dialysis and all."

[Stacy Without An E]

As someone who has experienced both sides of this issue, I must say that although I appreciate Dialysis technology, I believe it has stolen too much from my life.  To me personally, a kidney transplant would give me back my freedom as an individual.  I haven't seen my parents, my sister or her kids in years because of kidney Dialysis.  I'm tethered to the clinic and it affects everything in my life.  I can't travel (I don't trust strange Dialysis clinics) and women won't date me because I'm on six day a week treatments.

I'll suffer through the trials of immunosuppresssives and an ugly scar if it allows me to truly live the life I deserve and desire.