Daily dialysis outcomes rival a cadaveric kidney transplant

[Bill Peckham]

I'm sure there is substantial difference between dialysis and health care in Europe as opposed to what we have here in the US. I think studies done in this country would be much more pertinent than those done abroad.

I think we have a lot to learn from Europe where the results are far superior.

[stauffenberg]

Medical progress is glacially slow, and anyone who thinks there is a major difference between renal medicine today and renal medicine even 20 years ago should try my 'comparative medical journal' technique.  Go to a medical library and have a friend present you with a random collection of photocopied articles from medical journals in a particular field from 1988 and 2008 from which he has whited-out the dates.  I guarantee you will not be able to tell which are the modern articles and which are a generation old.  Each branch of medicine just keeps spinning its wheels over the same terrritory, decade after decade, with little or no progress.  One measure of this is that for the first time since life expectancy was recorded, the average life expectancy of the American male is declining.

[stauffenberg]

Most current strategies to reduce the problem with cytokine activation by dialysis involve not more pure dialysate but efforts to tinker with the dialysis membrane, either using high-efficiency hemodiafiltration or even coating the membrane with vitamin E.  All the work I have seen on this is prospective, still in the experimental stage, indicating that current solutions are still inadequate.

Fuller discussions of the problem of cytokine activation at each dialysis session can be found in V. Panichi, et al, "Inflammatory Pattern in Hemodiafiltration" Contributions to Nephrology, vol. 161 (2008) 185 and D. Cruz, et al, Contributions to Nephrology, vol. 161 (2008) 89.

With respect to whether dialysis is suicide or not, I think that however society wants to label it for whatever particular social purpose it has in mind, any deliberate choice to forego anything readily available which you know is necessary to sustain your life, whether it is water, food, air, or dialysis, is deciding to kill yourself.  But I see no problem with admitting this, since suicide is in many cases an entirely sensible response to the horrors of life, especially if there is no other way to escape them and they are unendurable.  If a person goes to a movie and finds it awful, I would regard him as a fool if he felt obligated to stay there until the end just because he had started watching it, and in the same way, a person who finds life more unpleasant than pleasant and who cannot repair the situation should exercise ordinary common sense and get out of it as fast as he can. Many cultures find suicide a perfectly honorable and logical alternative, from ancient Greek and Roman stoicism to modern Japan, so I don't see why so many Western countries today insist that the unpleasantry of life be endured to the bitter end to prove some metaphysical point.

[Romona]

Whatever option a person choses it just a treatment and not a cure. Hopefully studies help people with the choice. There are always going to be people with out comes better or worse than the averages of a study. On these message board are so many people living a fulfilling life through dialysis and transplant. I wish I would have found this board when I was first diagnosed to be more informed about kidney disease and treatment options.

[Meinuk]

Medical progress is glacially slow, and anyone who thinks there is a major difference between renal medicine today and renal medicine even 20 years ago should try my 'comparative medical journal' technique

Stauffenberg, I don't need to try your blind journal testing.  Twenty years ago, I was working at the Massachusetts General Hospital in their Department of Nephrology, which included their Transplant Clinic and Dialysis Units (Hemo and CAPD).  Twenty years ago, EPO was flown in as contraband by our rich patients from Japan, because it wasn't available here in the good old USA.  We were just finishing up the OKT3 study, and crushing up rat kidneys to extract cells.  I remember the days of CMZ infections and total sloughing of the dermis - much more common then than they are now.

Now, in 2008, we are working on transplantation without immunosuppressives. I dialyze at home using a machine that weighs 70 lbs and is hooked up to my kitchen sink, and I feel good.  I have designer phosphate binders that keep my phosphorus in check, and I am on an activated vitamin D that is helping my body adjust.

I agree, progress is slow, too slow, but we are making progress.  Stauffenberg, I enjoy your voice in this forum, but with every paragraph I read, you sound more and more like Eeyore from Winnie the Pooh.  Your cynicism colors every post, and next to you I sound like Pollyanna (which is hysterical, as I am more cynical than most)  My point?  Add some construction to your criticism. You are a well educated man, what would you do if you were running a research program?  We all see the flaws in the system.  Now let' s try to improve it.

The science is there, and we need more people like Dean Kamen, who has thought outside of the box and developed a dialysis machine the size of a phone book.  Or, some of the doctor's that I worked with in Boston, who are exploring the use of nanotechnology for dialysis.  And with regard to transplantation, there is work going on there as well.  None of this will happen fast enough for us, but you cannot deny that it is happening.

[Bill Peckham]

Whatever impact compartment activation has it's implicitly already factored into the morality data.

I agree with Meinuk that there has been progress and I doubt anyone thinks it has happened fast enough. These are difficult problems.

[Hemodoc]

Stauffenberg has supplied a biased report on many of these issues presented by Bill.  First, for anyone that withdraws from medical therapy and dies of the underlying disease, that is not a suicide.  The cause of death for a dialysis patient would be ESRD, not suicide. The death would be a direct result of the underlying disease. It is ethically acceptable to refuse medical care under the ethics of autonomy.  Further, Staffenberg has ignored the fact that depression leading to withdrawal of anti-rejection medications and subsequent graft failure and at times death is a large problem for transplant patients, not just dialysis patients.  Further, Stauffenberg has implied that dialysis is not physiologic but neither is the state of a post transplant patient. The difficulty with the inflammatory state in most dialysis patients is due to inadequate frequency and duration of dialysis with reduced inflammation accomplished by increasing clearance of middle molecules that cause the inflammatory state in the first place.  Thus the importance of the paper cited by Bill where improved middle molecule clearance has led to improved mortality equal to transplant.  Further, the unphysiologic state of anti-rejection medications leading to diabetes in 4-25% if renal transplant patients, cardiovascular disease, viral infections and a 9% risk of cancer has not in the least been addressed by Stauffenberg in his posts which in my opinion is a confounding bias to his statements.

Yes, for selected populations, renal transplant is an excellent choice, yet are we going to deny that quotidian dialysis is not likewise an excellent choice as well for those that wish to avoid the complications of renal transplant?

Lastly, as a board certified internal medicine specialist, I completely disagree with Stauffenberg's opinion on the lack of progress in renal disease in general and many other disease states as well.  His comments on the lack of progress are completely counter to my own experience as a physician with over 20 years experience.  I am also a dialyzor for over one year now, and I am grateful for dialysis as my chosen renal replacement therapy in stead of renal transplant due to the cancer risk of renal transplant. I am satisfied that I have a renal replacement strategy that will be quite achievable of ling term quality life.  It all comes down to choice, and the truth of daily dialysis and the truth of the real risks of having a transplant have not often been presented clearly.  The bias is completely on the side proceeding to renal transplant here in America.  Japan on the other hand has the best ESRD mortality figures with a very low rate of renal transplant.  Again, for some, especially those with ESRD due to diabetes, that may be the best choice, yet for those with no other comorbidities, the choice of daily dialysis is a very viable option.  This is just my own humble opinion.

[migaguiar]

I appreciate that scientist and researchers that work hard to find cures and alternatives treatments
BUT.........and their is always a but.........I would not let one work on me.

I would be afraid to be compartmentalized into a statistic.
I had a hard enough time getting the Dr.'s to change my med's to be tailored to me and not some stat.
I had a harder time trying to convince them to let me participate in martial arts and gym workouts.
They wanted me to stay home a be a veggie because those were the "Stat's."

This conversation has gone the way of numbers and science when the most important aspect is the individual.
If it wasnt for us with real life experience there wouldnt be no anyone to challenge the "book smarts."

SHD/nocturnal for the win. 

[Bill Peckham]

Welcome to the deep end of the pool doc - we are very fortunate to have a dialyzor who is a medical doctor willing to engage in the online renal community. That was a great first post . The convention is to post an introduction post over here http://ihatedialysis.com/forum/index.php?board=14.0 It can be anything you like but you have such an interesting background I am sure may of the other IHD posters would be interested in whatever you feel like sharing.

[Adam_W]

Welcome to IHD, Hemodoc. Thank you for your take on this issue, I completely agree.

Adam

[paris]

Epoman always loved these give and take conversations--especially when they became heated!    For me, a transplant may not ever be an option, so I am glad to read stats that give me hope for a long life on dialysis.  And knowledge from members so I can make the best choice in type of dialysis.

[Romona]

I was so naive about all of this stuff. Still don't understand so much of it.

[Zach]

 ... The bias is completely on the side proceeding to renal transplant here in America.  Japan on the other hand has the best ESRD mortality figures with a very low rate of renal transplant.  Again, for some, especially those with ESRD due to diabetes, that may be the best choice, yet for those with no other comorbidities, the choice of daily dialysis is a very viable option.  This is just my own humble opinion.

I agree.
 

[stauffenberg]

Hemodoc:  Social labels don't prove anything about whether an act logically amounts to suicide or not.  Logic dictates that if you willingly forego anything you know you can easily access and will certainly die without, you are choosing your own death, whether it be air, water, food, or for some people, dialysis.  To say that you don't commit suicide by withdrawing from dialysis since you in fact proximately die of the underlying condition which brought you to dialysis is like saying that you don't commit suicide by swallowing cyanide since you in fact only die of the proximate cause -- starvation of the oxygen supply -- which the cyanide causes.

To say that a patient might prefer daily dialysis to the complications of renal transplant is misleading, since both forms of treatment have complications, and no one would prefer the much worse prospets of complications of dialysis over those of renal transplant.  What the data showing that daily dialysis death rates are comparable to those of cadaveric transplant disguise is that while the mortality of both therapies may be the same, the morbidity of daily dialysis is much worse.  Certainly if you compare the two therapies in terms of QUALYs you have to admit that renal transplant is finitely superior.  Anything that inconveniences and immobilizes the patient should be regarded as a 'dis-ease,' so with daily dialysis you have the massive disease of the huge intrusion into the patient's life of one of the most burdensome treatments known to medicine, yet with a transplant the patient takes two sets of pills a day and otherwise functions normally.

Oftentimes clinicians fail to see the forest because they are lost in the trees when it comes to assessing progress in medicine.  Progress in medicine has to be measured against the rate of advance in other sciences.  So consider that the first jet aircraft (the Me 262) and the Kolff dialyzer were both invented in the same year.  But in aerospace we are now almost forty years beyond being able to send a man to the Moon and return him safely, yet there is no where near as much progress in renal medicine, which still struggles with a machine which is so burdensome to apply as a therapy that it ruins the patient's life in order to keep him alive -- one of the most terrible paradoxes in medicine.  The problem in dialysis treatment has always been that the treatment is so invasive of the patient's life as to be enormously destructive of it, and until that problem is overcome, which has been the constant and main issue ever since dialysis medicine advanced beyond cut-downs for access forty years ago, I say that there has been essentially zero progress in dialysis.

It is also iimportant to note that Japan has an extremely low availability of organs for transplant because of cultural and religious reasons for people not being willing to donate, and so dialysis is not the predominant treatment there because of any preference for it, but rather, out of necessity.  And when you compare Japan's 9% yearly death rate on dialysis with the normal, age-adjusted death rate of the population, it is still a dreadful outcome.

[Hemodoc]

Dear Stauffenberg,

Thank you for the kind reply.  I am quite puzzled why there is a looming disagreement on quotidian dialysis vs transplant.   They are both excellent options for certain people.  I myself have a higher than average risk of cancer so adding transplant on top of that is quite prohibitive.  I believe that there are others out there that are in a similar boat.  If you believe that transplant is the best option, then so be it, I have nothing but good to say about having that option.

Now, the issue of suicide and withdrawal of medical care.  If your definition is true, then I and many other doctors that have participated in withdrawal of medical care on dozens if not hundreds of patients should have placed us next to Kavorkian in his cell.  Of course, I am not in prison due to the fact that when you withdraw medical care for what ever reason and the patient dies of the underlying disease, it is not in any stretch of the imagination suicide.  If you wish to disagree with this, then so be it, but in the medical legal and ethical circles, it is not in the least the same.

Now, I could list many aspects of medicine that are greatly improved in my lifetime in the medical field, but I am not really understanding why you don't see what many of us in medicine do.  In any case, thank the Lord of the option of dialysis at home and thank the Lord for medicines like ACEI, ARBs and many others that make my life today so much bettern than those that took care of in similar situations just a short while ago.

Once again, I am quite pleased that you have done well with your transplant.  Thank the Lord that Bill Peckham has done so well with dialysis.  I don't see the conflict between the two that you do.  It is wonderful to have a disease that has so many good choices.

May God bless,

Peter

[Zach]

... no one would prefer the much worse prospets of complications of dialysis over those of renal transplant ...

I and thousands of other people with End Stage Renal Disease have made that decision.

With longer dialysis treatments in combination with phosphate binders, EPO, and Active Vitamin D (along with exercise and good nutrition) we can now avoid many of those complications.

[Meinuk]

Stauffenberg, your last post got me thinking.  Comparing Dialysis to the Space Program - well, that is a broad comparison.  Yes, they are both science, but there is an interesting phenomenon with regard to dialysis.  20 years ago, we were just fighting to keep people alive.  There was no quality of life issue, just life.  And 30 years ago, when my mother was 44, she died from ESRD, dialysis was not an option nor was transplant.  My disease is genetic (PKD), I had a road map of what to expect, and to compare my current health (at 41) to my mother's at the same age, well, there is no comparison.  And she had top medical care afforded to her - yet she still died tragically young.  All of us on dialysis are being kept alive artificially.  But now, we are demanding more, because we see that we can have more and feel better.

I work full time, as do many others.   Now that it is being shown that it is possible for people to survive and thrive on dialysis, well, quality of life is more of a driving issue. This is a fairly recent turn of events. With the advent of the internet, sharing of information has gotten more efficient, and people with CKD can organize like never before, lobbying the government, forming support networks, influencing the dialysis market.  I feel that dialysis research is still in it's nascency, and you seem to be expecting it to be tenured already.

I am sad that dialysis research has been the red-headed stepchild of medical science, but let's face it, financially, why spend millions in research when all you are doing is prolonging the inevitable?  But this is changing.  Now that we have so many examples of people who are active and contributing to society and dialyzing - as people stay healthier, hopefully, we'll see more and more activity and growth with regard to dialysis/CKD/Transplant research.  What is the dialysis equivalent to reaching the moon?  Non invasive dialysis? Or transplantation without immunosuppresives?

As anyone can see from NxStage's most recent stock report, the money isn't there yet, and I live in a capitalistic society.  How to get investors for research in a market that isn't profitable?  Now that is a challenge. (which brings into play the value of human life - but that is for another day)

You color your posts with doom and gloom and I'll admit that CKD is a "dis-ease", but for me (and others) is is not "with daily dialysis you have the massive disease of the huge intrusion into the patient's life of one of the most burdensome treatments known to medicine"  Huh?  For me the most burdensome part of dialysis is fighting with NxStage about deliveries.  I much prefer it to the alternative  - no dialysis.  And sitting in a chair for three hours watching tv in my own living room, surfing the net while being hooked up to a machine is immobilizing, but as an American Prime Time Couch Potato, the scene is not very far off from my pre-dialysis evenings.

While acknowledging that there are people out there who are overwhelmed and bitter about their lot in life, for me, I am just happy to be alive, able to work and able to enjoy life's every day beauties.  I have technology and scientific research to thank for that.  I feel that I am living in life's bonus round and I am grateful for that.  (I save my bitterness for politics)

Again, there could always be more, but I feel that your cynical bias sheds a very dark shadow on a disease that is already dark enough.

[stauffenberg]

One simple statistic speaks volumes: of those patients on dialysis who are in the normal working age, only 30% actually do work.  Look at Kevno's eloquent description of how he cannot get his life together between the constant cascade of hemodialysis treatments.  Look at the thread where people describe all that they have lost on dialysis.  Just look at the title of this entire message board.  The situation for dialysis patients is truly bleak.

When I was a university student in Germany part of my training required me to conduct statistical field work at a dialysis center.  That was in 1985, and I got to know exactly what the patient were going through then in every detail.  When I first became a dialysis patient myself and endured that treatment form 1996 to 2005, I experienced for myself every single negative aspect of dialysis I had personally observed and heard patients complaining about twenty years before.  While there is always some minor tinkering to improve the experience of dialysis patients in miniscule ways, the fact is that the situation has remained essentially the same for a whole generation now.  From 1942 to today, the problem with dialysis has stayed constant: The only method to allow the patient to avoid death is so intrusive on his time, energy, freedom, and health, that it destroys the quality of the life it is extending.

[monrein]

We still have no choice but to make the best of a less than ideal situation.  Well of course we could choose suicide but that wouldn't be considered a "normal" life either. 

[flip]

I don't consider my situation bleak. So far, all I've lost on dialysis is a little blood. Nine hours a week in a recliner is just a small inconvenience. I still do everything I did before and my golf game has gotten no worse. I guess I just never bought into the hype "you're on dialysis and you're supposed to feel bad".

I think we'll see tremendous improvements in the dialysis process in the next few years. Some of the current research is very promising so let's just hang around and wait.

[kidney4traci]

That is still BS.  I would rather be on dialysis than be dead.  Duh.  My life is not what it was before, but we do pretty much the same activities.  As a matter of fact, my kids think I am the bomb and my husband does too!  I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home.  I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be.   Leave me out of that stat thank you very much.  I am glad you are well on your transplant, and someday soon I hope to be too.  But, not all of us are that depressed or sick.

[Adam_W]

That is still BS.  I would rather be on dialysis than be dead.  Duh.  My life is not what it was before, but we do pretty much the same activities.  As a matter of fact, my kids think I am the bomb and my husband does too!  I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home.  I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be.   Leave me out of that stat thank you very much.  I am glad you are well on your transplant, and someday soon I hope to be too.  But, not all of us are that depressed or sick.

Well said. I'm sick to death of people lumping me into "statistics". All of us are individual, and we all deal with things differently, and respond to treatment differently, so ultimately, "statistics" are a big brown steaming lump of shit. I've said it before and I'll have to say it many more times I DON'T F***ING WANT A F***ING TRANSPLANT RIGHT NOW! I know that a transplant is no "walk in the park", and no bullshit scientific "statistics" will tell me otherwise. Dialysis sucks ass, but IT WORKS AND IT KEEPS US FROM BEING DEAD! I wish people wouldn't constantly sit back and badmouth the treatment that keeps thousands of us alive. And it's ridiculous how a certain someone seems to be able to tell that dialysis has "ruined my life". I have problems with dialysis because it's not perfect, but I deal with the problems and I move on. I have to switch to PD because of some problems, but I'll deal with that as well. I may even come to prefer PD over daily hemo. I'm still alive, and my life isn't the least bit ruined by this "barbaric outdated treatment." Sorry for the rant-fest, but I've been following this whole "dialysis vs transplant" thing and I just had to let out some steam that was building up. Sorry if I offended anyone.

Adam

[petey]

While acknowledging that there are people out there who are overwhelmed and bitter about their lot in life, for me, I am just happy to be alive, able to work and able to enjoy life's every day beauties. I have technology and scientific research to thank for that. I feel that I am living in life's bonus round and I am grateful for that. (I save my bitterness for politics)

I agree, Meinuk!  Marvin often says he's living on "borrowed time."  (His father died in 1971 of kidney failure -- long before dialysis was an option for ALL and not just the fortunate, affluent, select-few.)  We love life -- even with Marvin's daily dialysis in it.  No bitterness here -- just a tremendous gratefulness that dialysis is an option (as is transplantation) for Marvin.

That is still BS. I would rather be on dialysis than be dead. Duh. My life is not what it was before, but we do pretty much the same activities. As a matter of fact, my kids think I am the bomb and my husband does too! I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home. I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be. Leave me out of that stat thank you very much. I am glad you are well on your transplant, and someday soon I hope to be too. But, not all of us are that depressed or sick.

Please leave Marvin out of your stats, too, Stauffenberg!  No depression for him.  He's happy, well-adjusted, busy, active, and a contributing member of society -- even after 13 years and two months of dialysis.  When someone asks Marvin, "How are you doing?"  he has two responses.  Sometimes, he'll say, "Much better than I deserve," and sometimes he'll say, "If I got any better, I don't think I could stand myself."  He's sincere when he says these things.  Life, at least for Marvin and me, is good -- very, very, very, very good.

[Bill Peckham]

One simple statistic speaks volumes: of those patients on dialysis who are in the normal working age, only 30% actually do work.  Look at Kevno's eloquent description of how he cannot get his life together between the constant cascade of hemodialysis treatments.  Look at the thread where people describe all that they have lost on dialysis.  Just look at the title of this entire message board.  The situation for dialysis patients is truly bleak.

When I was a university student in Germany part of my training required me to conduct statistical field work at a dialysis center.  That was in 1985, and I got to know exactly what the patient were going through then in every detail.  When I first became a dialysis patient myself and endured that treatment form 1996 to 2005, I experienced for myself every single negative aspect of dialysis I had personally observed and heard patients complaining about twenty years before.  While there is always some minor tinkering to improve the experience of dialysis patients in miniscule ways, the fact is that the situation has remained essentially the same for a whole generation now.  From 1942 to today, the problem with dialysis has stayed constant: The only method to allow the patient to avoid death is so intrusive on his time, energy, freedom, and health, that it destroys the quality of the life it is extending.

.
Are the issues around work an inherent aspect of hemodialysis or a product of the provision of dialysis? I would contend that it is in no small part a product of the provision of dialysis. I haven't seen the latest census data but I believe less than 50% of US units are open in the evening. When you consider that units running three shifts a day can accommodate, at most 33% of their dialyzors during the work friendly evening shift, it becomes clear that incenter dialysis makes it tough to work.

There is also a bias in your data - it only counts paid work. It does not count a full time home maker as employed, it does not count some self-employment, or a full time student and it does not count volunteer activities. Here in at NKC (all units open in the evening) we have about 35% of our dialyzors working by official standards, when we include the other categories we jump up to 55 to 60%. I'm not counted because I have scaled back my union hours to spend more time volunteering, I'll work swing tomorrow and I was down there today but I'd need thirty or so hours a week to make the CMS cut.

It is shortcomings in the provision of dialysis that in large part cause the issues you raise. More dialysis, longer dialysis, more frequent dialysis do not require medical breakthroughs to implement. Medical breakthroughs will impact the provision of dialysis but we know today how to feel well without kidney function.

[stauffenberg]

Since I am not talking about any particular anecdotal cases or individuals in my posts, all the comments about my supposedly characterizing specific individuals by the general statistics and facts I discuss are absurd and misguided.  Of course individuals will vary, as any one who knows anything about statistics and Bell Curve distributions will know.  Science is based on what is statistically typical, not on the exceptional or the anecdotal.