I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on March 11, 2009, 10:25:18 PM
-
March 10, 2009
Renal Transplantation: Is it the Primary or Secondary Treatment for CKD-5?
By Peter Laird, MD
Until the time that we are able to regrow our kidneys in a petri dish, the debate will continue over allocation of a limited supply of donated living and deceased kidneys. Some castigate unfairly, in my opinion, those that have altruistically given their very flesh to family and stranger alike in an effort to stem the dance of death renal patients abide in. The gift of life of a living renal donation makes headline news on a regular basis. Complete strangers have stepped forward to give this gift of life to those in need. Yes, despite the many detractors of altruistic living donation, it does exist. The fact that we have even one stranger willing to give selflessly to another should always be applauded, especially by those that have so received.
Many continue to strive for a commercial system of financial reward in exchange for these extreme acts of altruism. Yet, in my mind, the debate on renal donations and various methods of increasing altruistic donations, financial compensation for vendor donations and deceased organ donations procured by opt out systems of presumed consent miss the central issue at hand, is kidney transplantation the primary treatment for CKD-5 or is it the secondary treatment option?
In the case of a patient that has a living related donor that gives this gift before the start of dialysis, many would argue reasonably that preemptive renal transplantation is the primary treatment option. Nevertheless, not all renal patients are transplant eligible. Issues of cardiovascular risk, cancer risk, obesity and co-morbid disease states eliminate thousands from the transplant list every year. Many choose not to place family or friends at jeopardy by asking for their healthy organs. I for one have a combination of relative medical risk and refusal to place my two willing donors at risk, my wife and my daughter who both came forward willing and eager to give me one of their healthy kidneys.
While I was exploring my own personal options, I had a great unease at accepting their gift if there was another viable option available to me. Certainly the diagnosis of malignant melanoma one month after I started dialysis settled the issue once and for all for me. The advent of cancer spreading out of control by aggressive immunosuppression augmented by my own willingness to bear my own disease without endangering my loved ones won out in my decision to pursue home, daily dialysis as my primary treatment option.
In the end, the issue of whether dialysis is the primary treatment option or renal transplant is turns out to be an individual decision based on many factors. Yet today, even though the overwhelming majority of patients will either choose to forgo transplant or not be eligible for transplant, the only consideration given publicity is that of renal transplant. We have about 1% of the hemodialysis census dialyzing in the comfort of their own home when other nations have up to one third taking advantage of this option.
For the majority of people with CKD-5 dialysis is their primary treatment option whether, home hemodialysis, home PD or incenter and they should be hopeful when reading the information that optimal dialysis has survival rates that rival living related transplant. These two CKD5 realities should place the primary treatment option of dialysis at the forefront of the discussion.
We continue to hear of those that die on the transplant waiting list. Yet, I have not seen one advocate of the various transplant procurement options come forth publicly in support of optimal dialysis even for those on the transplant list. Australia and other nations have a high transition rate from home hemodialysis to transplant with improved outcomes in their optimally dialysis patients awaiting their secondary treatment option of transplant.
Why are these very vocal advocates of renal transplantation so silent on the issue of optimal dialysis? I have my own private theories on why they remain silent publicly, but for those that understand that optimal dialysis is medically available but not socially promoted here in America, the tragedy that Belding Scribner sought to prevent overwhelms the benefit of all of our directed efforts for increasing renal transplantation when we consider those that could have survived if they had only had access to optimal dialysis.
Our short sighted efforts to focus all of our primary treatments in the renal transplantation option alone when the supply shall likely never meet the total demand from all who would wish a kidney, leads me to ask again, is renal transplantation a primary or secondary treatment option for the majority of American CKD-5 patients? If it is a secondary treatment option for the majority of our renal patients, then Dr. Scribner’s work was left unfinished. Perhaps answering this simple question first about dialysis and renal transplant will better focus our future efforts against this deadly condition.
http://www.billpeckham.com/from_the_sharp_end_of_the/2009/03/renal-transplantation-is-it-the-primary-or-secondary-treatment-for-ckd5.html
-
:beer1;
-
:2thumbsup;
-
:cheer:
-
Great reading :thumbup;
-
I agree that the options should not be prioritized and it's great that the doc points that out. To me it is reprehensible that every dialysis patient does not have access to the optimal treatments.
But, it still doesn't change the fact that a successful transplant offers something very close to a normal life. If there was a surplus of kidneys (cadaver or living donor) available how many of those on dialysis would opt to stay on dialysis rather than chose transplant?
So, one problem as I see it is that as soon as we let society off the hook about the concept of donating, we will not necessarily choose to do the right thing - e.g. sign that donor card, or step up to be tested. It's psychology fighting inertia, especially since we are able to offer little in the way of support for living donors. Another issue is that our society is heavily driven by our capitalistic under-pinnings. There is money to be made in dialysis clinics and they have a lobby.
-
Since there aren't enough cadaver kidneys to go around because of people's irrational fears regarding donation, then optimal dialysis is the way to go. I think it's all about the $. Healthcare only wants to pay the absolute minimum to keep people alive. They don't care about quality of life.
-
Interesting reading and view points from pelagia.
-
Pelagia is absoutely right. (see we do agree once in awhile) :cuddle;
If optimal dialysis is considered a cure like a transplant is considered a cure (It is not but society thinks it is) then people will not donate. They will be let off the hook as Pelagia said.
Then there is the matter of $. Medicare is being asked, yet again, to step up to the plate to not only save our lives, but to make us normal. Well, if Medicare is smart then they will provide optimal dialysis in trade for disability and Social Security checks. Fine, you are normal now get back to work.
Be careful what you ask for....
If people are doing optimal dialysis now in the United States like this doctor, then it is available for those who really want it. I'm on nocturnal which is considered optimal and Medicare pays for it. What do you want???
-
It is my understanding that even optimal dialysis does NOT replace full kidney function. This means dialysis patients on optimal dialysis are still not able to do what the average normal human being can do and would still be considered disabled. Some may have enough energy to work with optimal dialysis. God knows you can make more $ working than you can collecting social security benefits. It's not like we want to be on disability collecting meager checks.
-
It is interesting viewing people's opinions on dialysis and transplant. I have contended for a fair amount of time that the false notion of competetion between optimal dialysis and transplant has shaded the discussion negatively. Even here among many who have had dialysis and transplants, the sense of competetion between the two modalities surfaces. Yet, in many other nations, they have a completely differing view where optimal dialysis and available transplants are complementary and not competing.
I would counter a couple points first with the example of Bill Peckham and Shad Ireland. How many normal folks could keep up with either one of these dialysis patients? Before shoving accomplishments off to the side just becuase someone is on dialysis, perhaps we should consider these two examples among many. Zach is another example of an accomplished dialysis patient.
Further, the fact remains that the overwhelming majority of CKD patients worldwide will be treated primarily with dialysis. The supply of organs limits the number of patients that can be offered a transplant. Many have offered various methods of increasing donation or vending as some would have it, but I can't but help to think that denying optimal dialysis to anyone will improve donation rates. Just my take on the issue, but why would anyone one dialysis not want all to have access to optimal dialysis? By the way, I am still on in center standard therapy on a wait list for the NxStage. My being an MD has offered little in the way of giving me any different treatment than the next person. There are some things in this life that are equally bad for all, after all ,my flesh is quite the same as all of yours. It is my hope that all would look for improving all renal replacement therapies since all fall short of anything that we can call a cure, including transplant. With transplant, you simply trade one disease state for another, no matter the benefits or the risks, it is not a cure.
The fact remains that optimal dialysis is complementary to transplant and not competing against it. Optimal dialysis improves transplant results since few have the option of transplant first. Optimal dialysis reduces overall costs for dialysis patients. Optimal dialysis saves lives during dialysis and after transplant.
The sad fact remains that many voices in the renal community have chosen to sacrifice hundreds of thousands of patients that could have benefited from optimal dialysis for just the same principle of not letting the truth out that some could do as well with dialysis as with a tranplant as far as survival is concerned. I do not believe that treating someone well with dialysis can be compared to the freedom from dialysis that is implicit with transplant. Perhaps that is the single most important benefit of transpalnt, freedom from dialysis. There is still a decided benefit for transplant that is not in the least diminished by optimal dialysis. I do not in the least believe that people would wish anyone to remain on dialysis if given the choice. Once again, are we not only diminishing what a dialsyis patient can accomplish in their life, are we also underselling the true altruism of the many that do donate every year?
There remains no cure for failed kidneys, only choices between different treatment options. Most transplant patients are themselves CKD-3 or 4 even after transplant which places them at significant morbidity compared to the general population. Since few have the access to tranplant, shall we stand silent while the rest of us are subjected to poor outcomes that could be prevented by simply a few more hours of dialysis each week? I am personally ashamed of our last place American mortality results. I would hope that some simple changes could reduce the burden of suffering that is so prevalent in American dialysis units. Surely improving these results will not diminish those who will choose to donate their own or their loved one's precious organs. I see no such outcome by improving overall dialysis results. Just my opinion.
Sincerely,
Peter Laird, MD
Dialysis patient
Optimal Dialysis Advocate
-
I agree with you Peter and what strikes me as missing from the discussion about optimal dialysis is that so many more of us could continue working and paying our taxes and contributing to the economy and to society. Zach and Bill are very good examples of what can be achieved with optimal dialysis and excellent self-care on top of that. I worked full-time (teaching at a University) during my first bout of dialysis (5 years in all) most of which was home hemo and I also did many other things, like garden, cook, entertain and so on. This time, I found that by going to 5 days a week I felt considerably better than with the standard three since I never had more than one day off at a time. Nocturnal is even better for feeling closer to normal. I live in Canada and in order to go to 5 days a week all I had to do was mention it to my neph and I started one week later. We also, here in Toronto, have self-care clinics available since we can get more dialysis for less cost and involve patients more in their own care (that involvement seems to help patients take more responsibility for other aspects of looking after themselves better) and home dialysis is strongly encouraged for anyone capable of doing it. I especially like the self-care clinic idea because that maximizes the use of the machines, cuts staffing costs and removes the stress that can be problematic when a partner is required to help or when dialysis is experienced as intruding on home life.
For me personally, transplant has been my goal both times, but that in no way changes my belief that optimal dialysis ought to be pursued, for the reasons stated above and also because the better health a patient is in at the time of transplant (if that is an available option) the better the chances of a successful transplant, thereby further saving money for the healthcare system and returning optimal quality of life to renal patients.
-
I agree with you Peter and what strikes me as missing from the discussion about optimal dialysis is that so many more of us could continue working and paying our taxes and contributing to the economy and to society. Zach and Bill are very good examples of what can be achieved with optimal dialysis and excellent self-care on top of that. I worked full-time (teaching at a University) during my first bout of dialysis (5 years in all) most of which was home hemo and I also did many other things, like garden, cook, entertain and so on. This time, I found that by going to 5 days a week I felt considerably better than with the standard three since I never had more than one day off at a time. Nocturnal is even better for feeling closer to normal. I live in Canada and in order to go to 5 days a week all I had to do was mention it to my neph and I started one week later. We also, here in Toronto, have self-care clinics available since we can get more dialysis for less cost and involve patients more in their own care (that involvement seems to help patients take more responsibility for other aspects of looking after themselves better) and home dialysis is strongly encouraged for anyone capable of doing it. I especially like the self-care clinic idea because that maximizes the use of the machines, cuts staffing costs and removes the stress that can be problematic when a partner is required to help or when dialysis is experienced as intruding on home life.
For me personally, transplant has been my goal both times, but that in no way changes my belief that optimal dialysis ought to be pursued, for the reasons stated above and also because the better health a patient is in at the time of transplant (if that is an available option) the better the chances of a successful transplant, thereby further saving money for the healthcare system and returning optimal quality of life to renal patients.
:bow;
-
A kidney works 24 hours a day - it's crazy to think about dialysis being very effective on less than 15 hours a week!
-
What I have noticed about renal disease is that our bodies can adjust to the diminishing function of our kidneys.
I am pre-dialysis and have gone from experiencing my kidneys functioning at 100% to 15% within eight years. This may give me a different perspective than many of you who have had renal disease for a lifetime. Because our bodies adjust, the insidious effects of this disease creep up on us unknowingly. Before you know it, you are but a remnant of your previous self, and since it has happened slowly over the years, you may not even realize it. I am here to tell you that we should fight for optimal treatment and it is critical that we do. You deserve more than what your bodies have been forced to adjust to over the course of your renal disease. You deserve to feel better than just 15% kidney function that in center Hemodialysis offers at 3 or 4 treatments per week for 3 to 4 hours. Don't settle for less. Optimal dialysis will allow you better treatment providing results better than just 15%. Don't let the body, which is programmed to survive no matter what, fool you into thinking 20 hours of dialysis is enough. Optimal dialysis is the best outcome when dialysis is needed. If your lucky enough to get a transplant, then optimal dialysis will better prepare your body.
-
With transplant, you simply trade one disease state for another, no matter the benefits or the risks, it is not a cure.
There is still a decided benefit for transplant that is not in the least diminished by optimal dialysis. I do not in the least believe that people would wish anyone to remain on dialysis if given the choice.
Hemodoc are you still happy to remain on dialysis long term or have you changed your mind on receiving a Transplant?