JOHNSON CITY, Kansas — For Lindsee Wilson, it started with a Facebook post. A man named Gary Gray was looking for an organ donor: a healthy person willing to give up a piece of their liver to save his life. He had a rare autoimmune disease and needed a transplant, but he might’ve died before he qualified for a liver from the national waiting list.
They’d never met before. But Wilson, a 41-year-old speech language pathologist living in Southwestern Kansas, noticed that they had the same blood type. And they were both musicians. She was a classically trained singer. Gray, now 64 and living in Olathe, played the banjo.
“There were just enough things that I was like, oh yeah, I would be a good candidate,” Wilson said.
At some point, she learned that Gray and his wife had a teenage daughter — around the same age Wilson was when she lost her father.
“That … really made me feel like this is something I should do,” she said. “I could change things to make it so that their daughter got the opportunities that I didn’t get.”
Wilson set out to become one of a small but growing number of Americans who have donated part of their liver to someone in need.
The vast majority of liver transplants involve organs from deceased donors, but there aren’t nearly enough of them to make a transplant attainable for everyone suffering from end-stage liver disease. While over 9,000 liver transplants now take place in the U.S. each year, more than 1,500 people are removed from the liver waiting list because they either die or become too sick to successfully undergo surgery.
Turning to living donors can help reduce the number of Americans who die from liver disease. Medical experts acknowledge that it also involves navigating extra risks and thorny ethical questions — especially as more hospitals, including the University of Kansas Health System, work toward offering the procedure.
Risks
Wilson knew that by volunteering to give up part of her liver, she would be assuming significant risks. Becoming a living liver donor is safer than it used to be, but it’s still much riskier than donating a kidney.
“It’s an order of magnitude higher in the technical aspects as well as the complexity,” said Dr. Timothy Schmitt, director of transplant at the KU Health System. “The risk for the donor is probably 10- to 15-fold higher for a major complication than it is for a kidney donor.”
Humans have two kidneys, but only one liver. In living donor liver transplantation, surgeons remove one piece of the donor’s liver along with its blood supply. The remaining piece then regenerates to most of its initial size.
The surgery also requires removing a donor’s gallbladder, which can require some dietary changes in the immediate aftermath.
But Dr. Clay King, director of transplant and a cardiac transplant surgeon at the KU Health System, said physical and dietary restrictions end six weeks after donation. Barring complications, the long-term side effects are minimal.
“The liver can go on and function just as well as if they never had a hepatectomy at all,” he said. “The only outward sign that they’ve had the operation is the scar.”
Evaluation
Once Wilson got serious about becoming a donor, she traveled to Pennsylvania for a long day of evaluations at the University of Pittsburgh Medical Center, where the transplant would eventually take place. She spoke with surgeons, nurses, social workers, donor advocates, pharmacists and psychiatrists.
“I’m not an emotional person,” she said, “but by the end of the day, I was so emotionally drained.”
In addition to evaluating whether she was medically fit to donate, her transplant team also considered her motivations and whether she was psychologically fit to take on the surgery and recovery process.
Ean Pokryfky, a transplant social worker at Cleveland Clinic, said a psychosocial evaluation is essential to protecting donors and ensuring they understand the risks involved. The transplant team considers things like mental health, finances and history of substance use.
Evaluators must also confirm that someone isn’t donating for the wrong reasons — perhaps due to familial pressure or a belief that it would repair a broken relationship — and prepare them for the reality that not all transplants are successful. Despite the donor’s best efforts, the recipient may still die.
“I tell my donors, your motivation to do this is just as important as being a medical match,” Pokryfky said. “If you are not motivated or you’re being pressured, you are not a match.”
Donors are allowed to back out — discreetly — at any point in the process.
But Pokryfky said most donors he meets have a clear and compelling purpose for donating: saving a loved one’s life, or contributing to the greater good. When he follows up with them after surgery, few have regrets.
“One of the questions we ask them at the one-year follow up is, ‘Are you happy with your decision?’” he said. “Almost every single one says yes.”
Ethics and inequities
Bioethics experts say those kinds of safeguards are essential, and need concerted attention, given a push within the transplant community to increase the number of living donor liver transplants.
“This is a very prominent issue right now in the field,” said Elisa Gordon, a professor of surgery and biomedical ethics at Vanderbilt University Medical Center. “In living donation, people are putting themselves at risk. The key issue is ensuring that the benefits to the donor and recipient outweigh the risks to both of them.”
The American Society of Transplantation recently held a conference to discuss the barriers to expanding living donor liver transplantation more broadly. Gordon and other participants identified concerns, including around potential financial costs to donors.
A donor’s medical expenses are typically covered by the organ recipient’s insurance, but donation can still be a financial burden. Donors must take several weeks off of work, often unpaid, and might have to take additional time off if they experience complications. One study found 37% of donors reported dealing with out-of-pocket medical costs that were not covered by insurance, and 75% encountered extra expenses including travel and lost wages.
That can create economic barriers to living donation and contribute to racial disparities in organ transplantation rates.
“There are tremendous inequities in terms of people getting access to living donor liver and kidney transplantation,” Gordon said.
“It’s not just once you’re arriving at the transplant center,” she added. “It could very well be that the policies that shape food deserts and transportation and all these social determinants of health end up making it hard for people to get a transplant.”
She said that while living donation is one important way to increase liver transplant rates, she’d also like to see increased attention to other tactics, including ongoing public education to encourage more people to sign up to donate their organs after they die.
Living donation in Kansas
When Wilson and Gray underwent surgery in Pennsylvania last winter, they didn’t have the option of undergoing the surgery locally. That could soon change — the University of Kansas Health System is in the process of creating a living donor liver transplantation program.
It comes after a federal policy change made it significantly harder for Kansans like Gray to qualify for a liver transplant through the traditional route, through the national waiting list for deceased donor organs. In 2020, the federal contractor that manages that waiting list began sending organs farther from where they were donated — a move that prioritized sicker patients, but disadvantaged others living in largely poorer and more rural states.
Analysis this year by the Markup and the Washington Post revealed that the change resulted in a 37.5% drop in liver transplants in Kansas between 2019 and 2021, despite an increase in liver transplants nationally over that time period.
Amid public outcry over the change and other scandals, Congress and the Biden administration recently passed a bipartisan effort to improve transparency and accountability within the organ transplantation system, but changes could take time.
And, Schmitt at the KU Health System said, the scarcity of deceased donor livers will likely persist.
“As our population gets older, larger and more diabetic, the quality of donors goes down,” he said. “Living donor liver transplantation is just one of the many things we’re trying to do to increase the number of transplants.”
A reason to donate
Wilson hadn't considered donating an organ before she heard about Gray. A quirk of his condition was that he wasn’t scoring high on the metrics used to prioritize patients for livers from the national waitlist, even as he descended into acute sickness and began hallucinating.
“The biggest thing for me was that he needed a live liver donor, and not everyone is in a place where they can do that,” she said. “If I had children, there was no way that I would have been in a place to do this.”
But she said she can’t separate her decision to go through with it from a traumatic experience she had nearly two decades ago. She said that event — a life-threatening assault — continues to shape her decisions and drive to give back.
“When I realized that I was going to survive that, I knew at some point I would have an opportunity to pay it forward,” she said. “Not only did I survive and did I thrive, but now I also have the opportunity to help someone else live.”
Recovery
Less than a year after donation, Wilson said she feels almost entirely recovered.
In some ways, she even feels like she’s doing better than before surgery. Transplant experts find that many donors report feeling healthier after donation due to diet and other lifestyle changes they make during recovery.
Five months after surgery, Wilson, a longtime competitive runner, ran a four-mile race.
“When I was done, I was like, ‘Man, I could have done the eight-mile,’” she said.
A few months later, she ran a half-marathon. And signed up for a second one. She liked the challenge of getting back into shape.
“[It was] a little annoying, but fun,” she said. “There’s also a level of it that’s kind of interesting, and then you look at things differently. Because now I’m looking at what my body can do and how amazing it is that your body can do these things.”
It hasn’t all been easy. She had to be particularly careful, in the early days, to not be too active; that could increase her risk of getting a hernia. It took longer than she expected to get her abdominal muscles back. She still occasionally feels a bit of referred pain.
But she thinks the benefits far outweigh the costs.
“You’re giving up such a small portion of your day-to-day life for such a huge gain in the long run — and I’m not talking about Gary. I’m talking about for myself,” she said.
“To really understand the value of life, and how precious it is, and how we aren’t guaranteed tomorrow.”
How to become an organ donor
People of all ages and medical backgrounds can register to donate their organs after they die. You can remove or change your registration at any point.
Kansas residents can register as an organ donor online or in-person at the DMV. Residents of other states can locate their state registry here. Experts recommend also sharing your decision to be an organ donor with your family.
To learn more about becoming a living organ donor, visit the United Network for Organ Sharing’s website or contact your nearest transplant hospital.
Rose Conlon reports on health for KMUW and the Kansas News Service.
The Kansas News Service is a collaboration of KCUR, KMUW, Kansas Public Radio and High Plains Public Radio focused on health, the social determinants of health and their connection to public policy.
Kansas News Service stories and photos may be republished by news media at no cost with proper attribution and a link to ksnewsservice.org.
