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RENEE MONTAGNE, HOST:

It's MORNING EDITION, from NPR News. I'm Renee Montagne.

LINDA WERTHEIMER, HOST:

And I'm Linda Wertheimer. Today in "Your Health," living donors. More than 100,000 people have donated a kidney to a friend, family member or stranger in the last six decades. Most of the donors go on with their lives as though nothing had happened. But a small number suffer from chronic pain, surgical complications, or end up on the transplant list themselves.

As Gretchen Cuda-Kroen reports, that has advocates for living organ donation calling for better long-term research, and an overhaul of safeguards designed to protect the health and well-being of kidney donors nationwide.

GRETCHEN CUDA-KROEN, BYLINE: Nearly a year and a half ago, Jeff Moyer donated a kidney - something he says changed his life forever.

JEFF MOYER: Transplant surgery is a miracle. It's amazing. I mean, to think that my kidney saved someone else's life, that's staggeringly wonderful.

CUDA-KROEN: His recipient, the daughter of a co-worker, has since recovered and is doing well. But for Moyer, things didn't go so smoothly. Like most surgical patients, when Moyer awoke, he was in a lot of pain. He was reassured that the post-surgical pain was normal, and he'd be back on his feet again in a couple of weeks. But weeks, then months, went by. His scars faded, but the pain didn't.

MOYER: I was told that I would be better in two to four weeks. And then, it was four to six weeks; and then, six to eight weeks. And then - well, maybe as long as three months.

CUDA-KROEN: Today, Moyer says he has daily pain that leaves him virtually doubled over. It's affected his relationships, and his ability to work. And yet doctors tell him they can find nothing wrong. It's a story familiar to Vicky Young, who donated her left kidney to a friend seven years ago, only to develop kidney disease herself.

VICKY YOUNG: All of a sudden, I'm plummeting down to stage III chronic kidney disease. That scared the hell out of me.

CUDA-KROEN: Her kidney function eventually improved. But like Moyer, she also suffered from chronic pain and numbness in her left leg and groin - complications, she said, no one ever told her could happen.

YOUNG: Death, pneumonia, blood clots - that was what I was told. So I didn't think that there would be anything else. I figured if I was in the hospital and didn't have a blood clot, didn't have pneumonia and was still alive, I was going to be fine.

CUDA-KROEN: Also like Moyer, the doctors at her transplant center insisted her problems were not a result of her donation. She went from doctor to doctor, often paying out of pocket for expensive tests that weren't covered by insurance. The transplant center eventually confirmed that Young's symptoms were the result of nerve damage during surgery. But it took years - and, she estimates, as much as $15,000 - to finally get a diagnosis.

YOUNG: So, you know, on my working wages now, I have more health insurance, more health costs, for something that I did voluntarily; that wasn't supposed to have any effects on me.

CUDA-KROEN: Moyer and Young's experiences aren't typical. Most kidney donors return to their daily lives in a few weeks and have few - if any - complications. But while they represent only a small fraction of donors, they do exist. These donors say they were unprepared financially, and emotionally, for the prospect of lifelong health problems. And they're frustrated by a transplant system that's primarily focused on the organ recipient - but isn't prepared to care for them, explains Jeff Moyer.

MOYER: I don't think that the transplant system really respects donors as individuals that are going to be impacted by this; that will require ongoing attention of one form and another. We're sort of treated like living cadavers.

CUDA-KROEN: It's a sentiment echoed by Donna Luebke, a former nurse who donated her kidney to her sister in 1994, and now works as an independent donor advocate. She says there's no way to really know how many Jeff Moyers or Vicky Youngs there are because no one is keeping close track.

Living kidney donations have been successfully performed since the 1950s. But it wasn't until 2006 that the United Network for Organ Sharing began asking transplant centers to report on the health status of its donors.

However, according to reports by the Organ Procurement and Transplant Network, on average, transplant centers have lost track of more than a third of their donors one year after their donations; two-thirds, by two years. Furthermore, few centers report any laboratory results on their donors, and some centers consistently fail to report any data at all. That's something Donna Luebke says is unacceptable.

DONNA LUEBKE: I think that as donors taking this risk, we deserve the highest scientific standard, and that means data. And they don't have data. That scares me because if you don't have proof that you're providing high-quality care to your patients, then don't talk to me that this is minimal risk and donors are fine. I'm sort of tired of hearing that donors are fine. You can't tell us that, because you don't know.

CUDA-KROEN: Transplant centers argue that many donors simply don't return the forms; and that the cost of tracking down all their donors, and maintaining their records, is prohibitively expensive. But critics say they can, and should, do better; pointing out that comprehensive registries of long-term health data are maintained for the recipients of those organs, and also for bone marrow donors - and have been for years.

Lainie Friedman Ross, a physician and professor of bioethics at the University of Chicago, has been outspoken about the need for a similar national registry of kidney donors.

LAINIE FRIEDMAN ROSS: I think it should be morally required because individuals who have donated a kidney have done a wonderfully altruistic act. And we owe it to them to make sure that we are keeping them as healthy as they can be, post-donation.

CUDA-KROEN: Ross says the consequences of organ donation might not be apparent for 10, 20 or 30 years - and the risks are not the same for everyone. Donors who are young, African-American, Native American or Hispanic have a higher rate of kidney failure than the general population.

Additionally, transplant centers are increasingly willing to accept donors that would have been rejected in the past, including those that are older, obese, or have high blood pressure. And while Ross says that doesn't necessarily mean they shouldn't be donors, getting long-term data can help answer questions about how these donors will fare.

ROSS: We need to be able give more particular information to living donors. It's not just, on average two in a thousand go into kidney failure. It's, what is my risk as a potential kidney donor? But in order to have that information, we need to follow a hundred percent.

CUDA-KROEN: The problem is, no one can agree on the best way to monitor donor health, or who should pay for it. The Living Organ Donor Network has proposed a solution: an insurance policy that also tracks donor health. The policy costs a one-time fee of $550, and has been around for over 12 years. Yet few donors know about it.

Thomas McCune, a kidney specialist who directs the program, says only six of approximately 260 transplant programs currently cover all their donors with the insurance policy. McCune thinks most transplant centers simply don't want to pay. But he also thinks they're afraid of drawing attention to the small but real risks of donation that might scare people away.

DR. THOMAS MCCUNE: Transplant programs are comfortable with the idea that, well, we've never had this problem before, or it's so rare, we don't really have to worry about it; when in fact, every single donor who walks into a transplant center needs to worry about these potential complications, including the possibility that they could die. It's very rare, thank God. It hasn't happened that often. But it has happened.

CUDA-KROEN: McCune also points out that insuring donors, and monitoring their long-term health, is a bigger priority in other countries. The international transplant community recommends that in countries without universal health coverage - such as the United States - health, disability and life insurance related to the donation should be provided to every donor, free of charge.

MCCUNE: I think we need to step up and do our responsibility - which is to guarantee, as best we can, that if they do have a complication, or if they die, that we have done everything to keep them whole.

CUDA-KROEN: Surprisingly, even donors with complications, like Jeff Moyer, say they have no regrets.

MOYER: It's among the most important things I have ever done in my life. And I would do it again.

CUDA-KROEN: In fact, the majority of donors asked, agree. Organ donation is something they believe in, and they'd do it again. They simply want to make the system better.

For NPR News, I'm Gretchen Cuda-Kroen.

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WERTHEIMER: You can find kidney donor Jeff Moyer's commentaries about the donation process at npr.org.

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MONTAGNE: You're listening to MORNING EDITION from NPR News.

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