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Author Topic: Push to better track living kidney donors' long-term health  (Read 2507 times)

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Offline sherri

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Push to better track living kidney donors' long-term health
« on: February 04, 2018, 08:52:01 AM »

Push to better track living kidney donors' long-term health
Associated Press
The big unknown when someone donates a kidney: The long-term health consequences. Now the U.S. is taking a step toward finally tracking how living donors fare over decades — just as candidates are getting some new cautions to consider.

Specialists insist the surgery seldom brings serious complications for the donor. What happens later in life is less certain.

British researchers reported Monday that living kidney donors are more likely to develop later kidney failure than non-donors — and female donors may experience a pregnancy complication, problematic high blood pressure

Overall, the chances of trouble still are pretty low, according to the analysis of international donor studies published in Annals of Internal Medicine. But there hasn't been enough research to advise donor candidates — especially younger ones — about who's really most at risk and if there are protective steps they could take.

"For those of us who counsel potential donors, there is reason for pessimism that we will soon be able to estimate individual risk with any precision," Drs. Peter Reese of the University of Pennsylvania and Emilio Poggio of the Cleveland Clinic wrote in an accompanying editorial.

Until there's better information, it might be safer to accept donations from middle-aged donors than younger ones, the duo proposed. For example, the best studies of how the remaining kidney functions have tracked donors for eight to 15 years, which "should not be particularly reassuring when advising a 25-year-old donor," they wrote.

Meanwhile, the United Network for Organ Sharing, which oversees the U.S. transplant system, has added the cautions in Monday's report to the risk information given to would-be donors.

And 10 transplant centers are about to pilot-test a new Living Donor Collective — an attempt to track donors' health for the remainder of their lives, instead of the mere two years of monitoring now required. The goal is to eventually expand to all U.S. transplant programs.

"The more we understand risk, and disclose it transparently, the more we're ensuring public trust," said Dr. Krista Lentine of Saint Louis University, one of the pilot sites, who also directs UNOS' living donor committee.

More than 95,000 people are on the national waiting list for a kidney. Of 19,848 transplants performed last year, 5,811 were thanks to living donors, according to UNOS. Living donations shorten the yearslong wait, and those transplants tend to last longer.

Surgery always brings risks, but donor deaths from the operation are rare — three deaths for every 10,000 donors, according to the most-cited estimate. About 8 percent of donors experience surgical complications such as bleeding or blood clots, according to another study.

What about later? University of Cambridge researchers examined dozens of international studies that tracked donors for varying lengths of time. Two concerns emerged:

—One study found for every 10,000 people tracked over 15 years, 31 living donors experienced kidney failure compared to four non-donors.

—Among post-donation pregnancies, high blood pressure known as preeclampsia occurred in 11 percent of donors in one study, about twice the rate of non-donors.

Lentine said such information can help would-be donors understand the need to avoid later damage to their remaining kidney — like developing high blood pressure or obesity. She points to a new online tool doctors can use to predict if a candidate's possible risk is OK for donation.

Far more follow-up still is needed, said Vicky Young, a psychology professor in Arizona who suffered painful nerve damage and chronic kidney disease after donating nearly 14 years ago. She doesn't regret donating, but as a former UNOS board member she pushed for better risk disclosure — nerve injuries now are on the list.

And Young, 64, still wonders about her kidney, "Will I deteriorate as I age?"

Copyright 2018 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Living Kidney Donor 11/12/07

Offline Orchidlady

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Re: Push to better track living kidney donors' long-term health
« Reply #1 on: March 05, 2018, 11:37:09 AM »
Thanks for posting this Sherri.

I read this somewhere else, and thought at the time it was important. I have been wanting to respond to your post for a while and hesitated as I am not sure how the response will be reviewed.

My first thought on this was that, no matter the results of the research, I doubt it would change anyone's mind at that age. Old as I am, I remember - in my 20s I thought I was indestructible. Nothing would ever happen to me! As time goes on, that is not the case.

While I would still, without a doubt, donate to my husband, there are some things over the last 11 years where the donation has been a factor. I become more tired than I used to. Some bursitis/arthritis issues were hampered by the inability to use NSAIDs. "Oh use steroids instead!" people say. Not a good option, and they have their own issues - in fact worse issues many times. I keep my fingers crossed that I don't have to do any tests requiring dye as I get older - sometimes there are other options and sometimes you will just have to weigh the cost/benefit of the test. Will I get cancer and will the drugs have an effect on my remaining kidney?- I hope not for either case, but the risk is still there. There are a multitude of things that have come up that I never thought of 11 years ago.

Thanks again for posting the article. Definitely, a better following over the long haul is needed for donors. And what we ultimately need is a better option for transplants that does not require living donation from another individual.
Donated Left Kidney to Husband 10/30/07
Barnes Jewish Hospital
St. Louis, MO

Offline sherri

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Re: Push to better track living kidney donors' long-term health
« Reply #2 on: March 05, 2018, 06:54:35 PM »
Orchid Lady,

so nice to hear from you! I have fond memories of us donating around the same time and you were a very good support to me and others.

Everything you mentioned in your post, I thought of at the time of donation. I was not so worried about the surgical procedure but more worried about the possible long term effects. I remember speaking with my recipient's nephrologist and he said we were such a good match (6/6) and were almost as close as twins. this pleased the team but scared me. If we were so much alike, would I be at risk for the autoimmune disease he has, the high blood pressure, diabetes. I specifically remember thinking what happens if I get a cancer diagnosis, how will it effect my ability to tolerate high dose chemo, what about having a cardiac cath with dye as I age. I think that is why I am so overly cautious about not overworking my remaining nephrons. i haven't had an NSAID in 10 years, not because I don't need it, but because I am waiting till I "really need it". Menopause has not been kind and I am finding it so hard to take off the extra pounds. Any small glitch in my body and I always wonder is it attributable to the one kidney. my PTH started to rise, increased my vitamin D but it still did not correct. Endocrinologists are not impressed. I was a much better physical candidate than psychological one ten years ago. Trying to work on that and it has improved.
But what was my choice, ten years ago, deny my brother a kidney? So even though I did think about all the things you mentioned, it would have been hard to live with my two kidneys if my denial would have caused him to go on dialysis.  he has had a great 10 years and maybe he will be one of those lucky ones who never needs another kidney. And who knows, maybe we will be one of those 40 year recipient/donor siblings.

I do agree, I would love there to be other options besides living donors to help solve the transplant issue. However, I don't anticipate that any time soon. I have come to terms with my decision and continue to pray that i will continue to do well. Tomorrow I have my yearly nephrology visit. Hope all continues to be well.

All the best and glad to hear from you. I understand that social media (facebook and the like) has surpassed the traditional forum, but I do miss these posts.

Living Kidney Donor 11/12/07


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