Although most living kidney donors return to daily life within a few weeks, some experience unexpected physical and financial complications.
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Although most living kidney donors return to daily life within a few weeks, some experience unexpected physical and financial complications.
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Almost a year and a half ago, Jeff Moyer donated his kidney. He says it changed his life forever. “The transplant surgery is a miracle,” Moyer marvels. “So it’s amazing to think that my kidney saved someone else’s life.”
His reaction is surprising considering what he has been through. Like most surgical patients, when Mr. Moyer woke up, he was in severe pain. He reassured me that post-surgery pain was normal and that I would be back on my feet within a few weeks. But weeks and then months passed. The scar disappeared, but the pain did not.
Now, Moyer says she is in pain every day and her body has almost doubled in size. It affected his relationships and ability to work. Still, doctors tell him they can’t find anything wrong.
It’s a story all too familiar to Vicki Young, who donated her left kidney to a friend seven years ago but suffered from kidney disease herself.
“All of a sudden, I was down to stage III chronic kidney disease, which was really scary,” Young said.
Moyer and Young are just a few of the donors who say they were not prepared financially or emotionally for the possibility of lifelong health problems. ing. And they are frustrated by a transplant system that focuses primarily on organ recipients but is unprepared to care for donors.
Young’s kidney function eventually improved, but like Moyer, he suffered from chronic pain and numbness in his left leg and complications in his groin area that no one told him was possible. That’s what it means.
Jeff Moyer suffers from chronic pain. He says the pain started after he donated his kidney a year and a half ago.
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Jeff Moyer suffers from chronic pain. He says the pain started after he donated his kidney a year and a half ago.
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“Death, pneumonia, blood clots, that’s what I was told, so I didn’t think anything else was going to happen,” Young recalled. “I thought as long as I was in the hospital and there were no blood clots or pneumonia and I was still alive, I would be okay.”
Young eventually discovered that her symptoms were the result of nerve damage during surgery, but diagnosis took years and cost her $15,000 in out-of-pocket medical bills. We estimate that.
Moyer and Young’s experience is not typical. In the 60 years since transplants became available, more than 100,000 people have donated their kidneys to friends, family, and strangers. Most of them return to daily life within a few weeks and have few complications.
“I don’t think the transplant community really respects the donor as an individual affected by this,” Moyer explains. “We are being treated like living corpses.”
Donna Luebke, a former nurse who donated a kidney to her sister in 1994, now works as an independent donor advocate. She says there’s no way to actually know how many Jeff Moyers or Vicki Youngs there are, and no one is tracking them closely.
Living kidney donation has been successfully performed since the 1950s, but it wasn’t until 2006 that it actually became available. Unified network for organ sharing began requiring transplant centers to report donor health status. According to the report, Organ Procurement and Transplant NetworkHowever, transplant centers lose more than one-third of their donors after one year and, on average, two-thirds by two years. Additionally, few centers report test results on donors, and some consistently report no data at all. That’s unacceptable, Lübke says.
Vicki Young (left) and her mother. Mr. Young developed kidney disease after donating one of his kidneys to a friend of his seven years ago.
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Vicki Young (left) and her mother. Mr. Young developed kidney disease after donating one of his kidneys to a friend of his seven years ago.
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“I think as donors taking on this risk, we deserve the highest scientific standards. That means data, and they don’t have the data,” Luebke says. “I’m tired of hearing that the donor is fine. You can’t tell us that, because you don’t know.”
Some argue that many donors simply don’t return their forms and that the cost of tracking and maintaining records of all donors is prohibitive. But critics say it can and should be better.
Laney Friedman RossThe physician and professor of bioethics at the University of Chicago has been an outspoken advocate for the need for a similar comprehensive national registry of kidney donors.
“I think it should be morally required,” Ross says.
Ross says the consequences of organ donation may not become clear until decades later, and the risks are not the same for everyone. Younger or minority donors have higher rates of kidney failure than the general population.
Additionally, transplant centers are increasingly willing to accept donors who are elderly, obese, or hypertensive. And while that doesn’t necessarily mean they shouldn’t become donors, Ross says, getting long-term data could help answer questions about what happens to these donors going forward. There is sex.
“We need to be able to provide more specific information to living donors. It’s not just ‘on average 2 in 1,000 people will develop kidney failure’, it’s ‘potential kidney donor ‘What is my risk as an individual?”’ Ross says.
of Living organ donor network proposed a solution: an insurance contract that also tracks the donor’s health status. The insurance costs him a one-time fee of $550 and has been around for more than 12 years, but few donors know about it.
Thomas McCune, the nephrologist who directs the program, said that out of about 260 transplant programs, only six currently offer insurance coverage to all donors, in part because of their small size. However, he said this was because drawing attention to the actual risks of donors could frighten people.
“Transplant programs need to worry about this problem because it has never happened before or is so rare that it is actually something that every donor that enters a transplant center needs.” “We don’t have to worry about these potential complications, including the possibility of death. Thankfully, this is very rare. It hasn’t happened all that often. .But that’s what happened,” McCune said.
Case in point: a kidney donor and a young mother who died on an operating table in a hospital last month. Montefiore Medical Center in New York after her aorta was accidentally severed during surgery.
Remarkably, nearly all donors asked said they had no regrets, even those with complications like Jeff Moyer. They just want to improve the system.
“This is one of the most important things I’ve ever done in my life,” Moyer said. “And I would love to do it again.”
