September 29, 2016
Barbara Sobko, left, and Karen Buckner September 29, 2016 | by Amy Bickers

Price Johnson of Oxford, Miss., was lying on his back, his cell phone only two feet out of reach. “I wished I could reach it and email someone.”

And it should have been as simple as that, the wish followed by the action to make it so. But Johnson was in a hospital bed at UAB recuperating from a kidney transplant. As others bustled around him, he felt powerless. “I suffer from the delusion that I’m the master of my own destiny,” he said. “Being the subject of everything was difficult.”

Johnson first found out his kidneys were failing in 1999. He was 39 years old and considered himself healthy. He ran long distance. He played tennis and rode his bike. No one could explain why his kidneys were failing.

For the next 14 years, his physician monitored his kidney function and prescribed medication to slow the inevitable process. By 2013, the time had come to discuss options, dialysis and transplant, so he came to UAB, which has performed more living donor transplants than any other program in the country since 1987. Johnson’s brother was a match, but a health issue later prevented him from donating his kidney.

Without another family member as a match, Johnson became part of UAB’s Kidney Chain, which matches living donors with unrelated recipients who have someone willing to donate but who is not a match for that recipient.

UAB’s Kidney Chain makes transplantation possible between some donors and recipients who would otherwise be incompatible. The only such program in the Southeast, it fills a major need in Alabama; with more than 3,700 candidates on the waiting list, Alabama has the second longest list in the country.

In the end, Johnson’s donated kidney came from a friend, Laura Lee. That day in the hospital, recovering from surgery and wishing he could reach his phone, Johnson asked who he could talk to about making a donation. “Just asking the question made me feel like I could do something that would put me on the level of the amazing people I was surrounded by, who are helping people like me,” he said. “The idea of being able to do something to help made me feel like I was somehow getting on the team. And it was an impressive team.”

In December 2015, Johnson and his wife, Vikki Hughes Johnson, made a gift to establish the Living Donor Kidney Transplant Research Acceleration Fund. The fund will support research currently under the direction of his surgeon, Jayme Locke, MD, MPH, director of UAB’s Incompatible Kidney Transplant Program.

“Whenever I see her, angels start singing,” Johnson says, adding that he is only half joking. “She has so much presence in the room with a patient. She’s 100 percent in the room with you. One of the main reasons we made the gift is we wanted to support something that had her name or her motivation attached.”

Locke says gifts like this allow researchers to pursue innovative ideas in the early stages and establish preliminary data that can lead to attention from funding agencies such as the National Institutes of Health.

“It gives me the ability to be a little more cutting edge and think more outside the box. I genuinely believe that’s what research really needs. If you’re going to advance a field, you’ve got to be the champion of outside-the-box thinking and push them early on,” Locke says.

“I’m humbled by the fact that the Johnsons wanted to support what I’m doing. They’ve had a profound impact on me and my career and, by virtue of that, the patients I take care of. It’s incredibly motivating and inspiring. I will forever be grateful for that.”

Johnson was particularly interested in Locke’s desire to conduct research on the post-operation effects –medical as well as psychosocial and psychological – on donors. Locke says the study will give physicians vital insight into building the most effective infrastructure for post-donation care.

“When my wife and I heard about Dr. Locke’s hope to get a research center started that was centered around donor research, it really struck me,” he said. “There are things about the psychology of (kidney donations) that interests me now. What Laura Lee did was a huge personal sacrifice. It’s undeniable. Without her courageous act my life would be terribly limited at this very moment.

“There are stories throughout humanity of people saving others. Where does that come from? Evolutionarily, that doesn’t make any sense, but there can be an instinctive desire in humans to save a life. I’m so grateful there is.”

In June at the first-ever Organ Donation Summit, the White House announced that the UAB Division of Transplantation will be part of two national efforts to increase access to organ transplants and reduce the number of patients awaiting kidney transplantation.

One effort, the Live Donor Champion model for African-Americans, is part of a comprehensive program to teach patients how to leverage personal connections and social networks to raise awareness about the need for organ donors and to help identify potential live donor candidates. The UAB program will be known as the Living Donor Navigator Program.

In the second program, UAB will be part of a collaborative effort with Johns Hopkins University designed to help patients in need of live donor transplants leverage their social networks to find potential living kidney donors. The program will teach transplant patients how to use a specially designed Facebook app to share their story. The hope is that this will help those in need have a better opportunity to find a living donor. Locke, the co-principal investigator, says UAB patients in need of kidney transplants will begin participating in both programs by the end of the year.

To support UAB’s Comprehensive Transplant Institute: Christian Smith; 205.934-1974; cnsmith@uab.edu.
To learn more about UAB’s kidney chain, visit www.uab.edu/kidneychain.