Alternatives to dialysis

(Topic from archives: Originally posted 09:28:15 05/20/2003)

Hello - I have been on hemodialysis since June 2001, when my fifth kidney transplant stopped working. I was born with only one kidney, which had an obstructed uropathy, and I initially started on dialysis at the age of 18. I am now 38. Last year I was evaluated and have been on the transplant waiting list since November. However, I have been told that because of all of my previous surgeries, my high level of antibodies will make me incompatible with 99 percent of the donor population. I have had two potential living donors (a half sister and a friend) evaluated but disqualified for this reason. So, I am now facing the prospect of being on dialysis for the rest of my life, which is not something I am looking forward to. Therefore, I am asking if anyone knows about any programs or studies which might be willing to accept someone with my history. I have heard about work being done with biomechanical kidneys or cross-species transplantation, but I do not know how to get involved with these. Any information or advice anyone could give me would be greatly appreciated.
Thank you, Michael Smith

Are you a candidate for peritoneal dialysis? If not, have you considered home hemodialysis that would give you more freedom and flexibility than center hemodialysis? To broaden the possibility that a kidney would become available, have you listed yourself on multiple transplant waiting lists? Have you talked with the transplant program about any procedures that could reduce your antibody level? You might want to check out the clinical trials web site at http://www.clinicaltrials.gov.

Xenotransplantation (animal species to human transplantation) might be a good option for you if you don't have an ethical problem with a pig kidney that has been genetically engineered to very closely match your own D.N.A.

I've had a chance several times to talk with Ray Gabel of the Midwest Transplant Network and they are doing some very promising research at the University of Missouri Medical Center (and some up in Nebraska). Last time I talked to him, we were about 7 years away from human trials. From what I understand, some might actually need NO immunosuppressants (because the match is so genetically close) others will need far less that current human to human transplants require.

Just remember that they're constantly working on making our lives better. Best wishes.

Andy

I am presenting serving on the Secretary of Health and Human Services advisory committee on xenotransplantation (xenotx.), which refers to any procedure that involves 1)transplantation, implantation or infusion into a human of either live cells, tissues or organs from a nonhuman source animal, or 2)human body fluids, organs, etc. that have had contact with live nonhuman animal cells, tissues or organs. One function of this committee is to report to Sec. Tommy Thompson on the current state of the science of xenotx. Currently there is limited clinical research being done that involves xenotx. of cells and tissues but none that involves whole-organ txs. from animals to humans, although this may occur in the forseeable future. The committtee is very familiar with the work being done at MU, as well as throughout the country, and while promising, there has been no prediction made by this scientific committee as to when, if ever, xenotx. of organs will occur. There are many serious things to consider. There are public health risks associated with xenotx., as known and unknown infectious diseases could be transmitted to the human recipient from the source animal. The recipient could then transmit this to close contacts and even the public. As a result, xenotx. brings up a whole host of issues that are not only medical but ethical, legal and social. The committee is also attempting to address these and is currently working on a detailed informed consent document. The committee meetings and their proceedings are available to the public. If interested, you might be able to obtain them by searching the web site for the Depart. of Health and Human Services. There are always medical advances being made so don't give up hope. Think of all you've seen change in the time you've been on dialysis.

Mike, I don't know if you are still reading posts here...but if you are or if anyone has the same question...I just stumbled across intravenous immunoglobulin which removes antibodies so that you can be re-transplanted. I'm going to ask my doctor about it tomorrow since I'm in a similar situation! There is hope afterall.

Originally Posted by Mike Smith

(Topic from archives: Originally posted 09:28:15 05/20/2003)

Hello - I have been on hemodialysis since June 2001, when my fifth kidney transplant stopped working. I was born with only one kidney, which had an obstructed uropathy, and I initially started on dialysis at the age of 18. I am now 38. Last year I was evaluated and have been on the transplant waiting list since November. However, I have been told that because of all of my previous surgeries, my high level of antibodies will make me incompatible with 99 percent of the donor population. I have had two potential living donors (a half sister and a friend) evaluated but disqualified for this reason. So, I am now facing the prospect of being on dialysis for the rest of my life, which is not something I am looking forward to. Therefore, I am asking if anyone knows about any programs or studies which might be willing to accept someone with my history. I have heard about work being done with biomechanical kidneys or cross-species transplantation, but I do not know how to get involved with these. Any information or advice anyone could give me would be greatly appreciated.
Thank you, Michael Smith

My husband is in a similar situation, he had a transplant back in 85 cadaver, it lasted almonst 7 years, he has been on dialysis since 1984, his antibodies are at 99%, we were told they have what's considered 2nd rate kidneys that are being transplanted. do you know anything about this? We live in South Carolina

[Beth Witten MSW ACSW]

I believe what you're referring to is a kidney from an "expanded criteria donor" (ECD). This article talks about ECD kidneys and states that it is best to use kidneys from ECD kidneys in lower risk people, not those with high peak reactive antibodies (PRA).

What your husband might want to do is ask his doctor about high PRA reduction approaches. One transplant program that has a "high PRA rescue program" is the University of Maryland Medical Center. There may be others.
http://www.umm.edu/transplant/kidney/highpra.htm