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.”
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.