| Author | Subject: Lupus Nephritis and kidney transplant denial |
| lisa | Posted At 04:21:38 12/31/2002 I dont know if you will be able to answer this question or not. I know that a couple of years ago my fiance' was looking for a kidney transplant as a result of damage to the kidney from lupus nephritis. He was told that due to the nephritic nature to the disease that he would not qualify for a transplant. I have read recently that many persons who suffer from lupus nephritis are granted a transplant of the kidney. I have also read in some literature that some people are granted this type of transplant have a decreased chance of such extreme damage requiring another transplant or at least have decreased the pace at which such damage is done that requires a transplant. Do you have any additional information about this? Should my fiance reapply for such a procedure? Thank you for any information you can provide. |
| Beth Witten | Re: Lupus Nephritis and kidney transplant denial (Currently 0 replies) Posted At 13:21:21 12/31/2002 A great resource to look up medical evidence for or against a specific treatment is PubMed. This web site is maintained by the National Library of Medicine of the National Institutes of Health. It has abstracts of studies reported in many journals. See www.ncbi.nlm.nih.gov/entrez/query.fcgi. You can also look up studies by author or title. I searched this web site using the terms "lupus & kidney transplant" and limited my search to the last 5 years. I skimmed the most recent of 88 studies. These report that the recurrence of lupus in a transplanted kidney is very rare -- one study reported 1-3%, reportedly most often in the first 6 years after transplantation. Patient acceptance for living donor transplants seems to be as high for people with lupus as those without lupus. People with lupus were more likely than those with other conditions to be placed on the waiting list for a cadaveric kidney although more people with lupus did not receive a kidney, possibly due to non-medical reasons in addition to medical ones. The authors said that their results showed that people with lupus were not medically ineligible for transplant. Finally, in a study of young people with lupus who were followed long-term following kidney transplantation, patient survival and transplant success/rejection were as good as for young people without lupus. If I were you, I'd suggest that your fiance' either seek re-evaluation from the same transplant program or seek evaluation from another transplant program. Although there are many similarities in program protocols for acceptance, there are some differences. References: 1. Ahuja TS, Boughton J, Weiss V, Memon A, Remmers A Jr, Rajaraman S. Late recurrence of lupus nephritis in a renal transplant recipient: response to mycophenolate mofetil. Am J Med Sci. 2001 Sep;322(3):166-9. 2. Bartosh SM, Fine RN, Sullivan EK. Outcome after transplantation of young patients with systemic lupus erythematosus: a report of the North American pediatric renal transplant cooperative study. Transplantation. 2001 Sep 15;72(5):973-8. 3. Ward MM. Access to renal transplantation among patients with end-stage renal disease due to lupus nephritis. Am J Kidney Dis. 2000 May;35(5):915-22. |
| Ronald | Re: Lupus Nephritis and kidney transplant denial (Currently 0 replies) Posted At 14:53:33 04/30/2003 I to am in ESRD do to lupus nephritus, this month is the one year anniversary of my nightmare. I have a living doner(my brother) but still seem to be left with more questions then answers. The lupus was in remission for months and U of Penn hospital did'nt act on this chance to trasplant with no explanation. Now the lupus is active again. I've complied with everthing they asked me to do and still get no definite answers. I am 28 years old and just want my life back. |
| Beth Witten | Re: Lupus Nephritis and kidney transplant denial (Currently 1 replies) Posted At 23:02:05 04/30/2003 I'd start by being sure that your donor wants to donate his kidney. Sometimes people change their minds or transplant centers may think they hear mixed messages. It's important to remember that a kidney donation is a gift and not an obligation so even if your brother has changed his mind, don't let this destroy your relationship. There is probably another kidney out there waiting for you. If your brother is still interested in donating, ask for a conference with the transplant team. Make a list of questions, such as: * Would the transplant program transplant you when your lupus is active? * If not, why not? * If not, why did they not transplant you when your lupus was in remission? * Would they be more or less likely to transplant you with a live vs. deceased donor? * How long after your lupus is in remission next time can you get a transplant and how will everyone know that the time is right? * How many lupus patients have they transplanted and how successful have the transplants been short-term and long-term (5 years or longer)? This is just a partial list. Add to it. Consider sending the questions to the team in advance so it will save everyone's time. Take your brother and any other support people you need to the meeting. Be sure to take notes or use a tape recorder to help you remember what your hear. In preparation for this meeting, read everything you can about lupus and kidney transplants. * National Kidney Foundation brochure on lupus at http://www.kidney.org/general/atoz/content/lupus.html phone: (800) 622-9010 * Lupus Foundation of America, Inc. at www.lupus.org phone: (301)670-9292 Good luck! |
| Ella Koch | Re: Lupus Nephritis and kidney transplant denial (Currently 0 replies) Posted At 18:21:33 07/28/2003 I lost my kidney due to lupus I 1988. My mother and sibs tested but they were not even the same blood type( my father was not living), I didn't want to use my hubands kidney since if we wanted to have children anitbodies would be a problem. So I was on the wanting list... in fact i was told that people with Lupus should be on dialysis for at least 6mo. to lessen the chance of rejection. I was on the list for 4mo. and got a call in the middle of the night that a perfect match was found for me and that by law (one that went into effect only 1mo.ealier)That centers needed to check the national data base if they found a perfect match it needed to go to that person since the success rate was so much better So don't dispare if no ones a match for you. God works in strange ways. Aren't we all lucky to have medicine 1 step ahead of us... not too long ago we wouldn't have dialysis to keep us alive to wait for the gift of life from a family with a big heart and a bigger grief of their own. I believe that Lupus suffers or a tough group try harder than most to keep up .. and they do better than the diabetics after transplantation. I have not had any proubles with rejection.I have heard about new reaserch to lessen amounts of anti-rejection meds. does any know about this? I have had sqaumous cell cancer.. and the radiation about killed me( I was in the Hospital for 2 mo.) Oh by the way 12 years ago I got another call a perfect match son... a baby boy 10lbs .. I wasn't even on the list... So realax.. just keep trying your best and things will work out. |
| Beth Witten | Re: Lupus Nephritis and kidney transplant denial (Currently 0 replies) Posted At 17:48:45 07/31/2003 I'm glad that things have gone so well for you. In answer to your question, there have been several studies that have looked at whether it's possible to lower the dose or change from one immunosuppressant to another. You can find abstracts of these and other studies on PubMed, the National Library of Medicine's web site for scientific research at http://www.ncbi.nlm.nih.gov/entrez/. I went to this web site and used the search terms "reduce" "immunosuppressant" "kidney transplant" to get possible abstracts to read. If you haven't already done so, I'd suggest that you ask your transplant coordinator or transplant physician what your transplant center is doing related to reducing dose or changing to different medications. The downside is that newer medications are often more expensive than older ones and some may not be covered by Medicare. Your transplant coordinator or financial counselor should be able to answer questions about cost and coverage. |