Joe Wilson first heard about the UW Medicine Living Donor Liver Transplant program in the middle of the COVID-19 pandemic, when he was in graduate school.
Like most people, the then 25-year-old wasn’t aware that a living liver donation was even possible.
“I had heard of donating a kidney, but not the liver,” says Wilson. He would go on to become the program’s first non-directed donor — someone who selflessly gives a portion of their liver not to someone they know, but to whoever might need it.
The program, part of the new UW Medicine Transplant Institute, is the only one of its kind in the Pacific Northwest doing this innovative procedure, which uses the remarkable ability of the liver to regenerate (regrow) in both the donor and the recipient. The effort also serves pediatric patients in partnership with Seattle Children’s Hospital.
“The living donor program was reestablished in 2020, due to the foresight of UWMC leadership, including Dr. Jorge Reyes and Dr. Scott Biggins, in preparation for a change in the U.S. organ allocation system,” says Mark Sturdevant, MD, surgical director of liver transplantation and the program’s director.
This change, designed to prioritize the sickest patients first, meant more access for some and less for others. For instance, under the new allocation system, an older person or someone not deathly ill may not register high enough on the waiting list to get a liver offer. Likewise, some with liver cancer may not become eligible for transplant until their cancer progresses too far for them to survive.
At UW Medicine, it meant that fewer livers would enter the system, and fewer people would get treatment — even though their lives depended on it.
That’s why Sturdevant finds the living donor program so rewarding. “More than 1,000 people die waiting for a liver every year in the U.S. At UW Medicine, this innovation allows us to consider transplants for people who previously wouldn’t even have gotten onto the list,” he says. “Liver disease is horrible and debilitating, and in the right situation, you can dramatically and quickly impact someone’s life.”
Spreading awareness about organ donation
Often, people who need a donor are hesitant to make the ask of anyone. It feels too big, even when their life hangs in the balance. The Transplant Institute’s mission is to make transplants accessible to as many patients as possible — which starts with educating people about living donor transplant.
Kiran Bambha, MD, MSc, medical director of the UW Living Donor Liver Transplant Program, was awarded a grant from UWMC to build the Living Donor Advocacy Initiative (LDAI). The LDAI is focused on building robust resources for donor and recipient education around living donor liver transplant and living liver donation. The program also trains individuals on how to become donor champions (or spokespersons) to help their loved ones find potential living donors.
Through this program, the donor champions become instrumental in finding family, friends or even a benevolent stranger who may be a lifesaving match.
“The donor champion program is now a fully integrated service for our patients and their families,” says Sturdevant. “Shelby Slagle, our transplant outreach manager, has helped countless families over the last several years regarding their own education on living donation and providing them concrete ways to seek a living donor responsibly and graciously. This effort has been an integral part of our becoming one of the top five programs nationally, and Seattle Children’s becoming No. 1, in providing people with access to this procedure.”
Bambha spends much of her time educating patients about their options. “It’s what I’m most passionate about. There’s a lot to discuss with both the potential recipients and the donors. It’s both humbling and rewarding to be involved in the living donation process,” Bambha says.
“The majority of recipients are thinking of the donor’s well-being, and it’s best to address that head-on. Potential recipients might say, ‘I don’t know anybody who could be a donor,’ or ‘I could never ask someone to do that for me.’ That may seem like a hard stop for them, but that’s not where the conversation can end. They’re not thinking of the impact of their own death on their loved ones or the reward for a loved one of having the ability to extend their life. I do talk about that openly with people.”
It’s easy to see why saving a loved one’s life would be a powerful motivation to donate an organ. But what inspires non-directed donors like Wilson?
Caring for one another
For Wilson, organ donation was a way to care for his community. Although he eventually met the person he donated to, which he says was gratifying, his reasons for organ donation speak profoundly about healing and the possibilities that open when people care for each other.
“I’m a queer person, and I come from communities that are not always tolerant or accepting,” says Wilson. “When I came to Seattle, I found a good community. When you are in a community where you feel fully accepted, and people care for you in a new way, it makes you want to look for ways to care for others.”
On a practical level, however, there are barriers that can make organ donation more difficult. While the recipient’s insurance covers the donor’s medical bills, Sturdevant notes that more funding is needed to offset other costs that come out of the donor’s pocket.
“Donors fly in from different parts of the country and take time off work,” he says. “With that and all the follow-up, it’s not a small ask, typically adding up to $6,000–8,000 start-to-finish. Sometimes, donors can’t be evaluated at all because of the financial impediment.”
Wilson says the main challenges he experienced were the time involved and the difficulty of predicting exactly when the surgery would occur. In his case, it happened at the very end of his window of opportunity. That meant that when his apartment lease was up, his friends had to do all the heavy lifting to move him into a new place, and his return to work had to be modified.
Still, Wilson feels that his living liver donation was worth it and encourages others to learn more about the program. To people considering stepping up, he says that it sounds like a much bigger deal than it ends up being and that the pre-testing is the most taxing part.
“The vast majority of people that donate say that they are happy and satisfied with their choice,” he says. “That makes sense to me — I feel it’s something tangibly good.”
By Alice Skipton