IT’S NOT EASY to ask a loved one—let alone a stranger—to donate their kidney to you.
But that’s the predicament the more than 90,000 people on a waiting list for a kidney find themselves in every year. Fewer than 20,000 are fortunate enough to get one, which extends and enhances their lives immeasurably. After one year of dialysis, people have a 15 to 20 percent mortality rate, with a five-year survival rate under 50 percent. Those who receive transplants have a five-year survival rate over 80 percent.
One of the nation’s largest kidney-transplant centers, the University of Alabama at Birmingham School of Medicine, is pioneering new ways to recruit more live donors, particularly among people in marginalized communities where the need is greatest.“We first help patients craft an elevator speech to tell their story, then we help them share their story like a political campaign,” says Daagye Hendricks, one of two navigators in UAB’s living-donor program, created in 2017.
The four-week program involves teaching patients both conventional networking and out-of-the-box tactics. “One patient got a kidney from a billboard story,” says Hendricks. “Someone donated billboard time to a patient and a stranger driving down the freeway saw it, felt tugging at her heart, and called in to donate.”
The program also debunks misinformation that relates to the fear of live kidney donation. For instance, there’s no decrease in life expectancy for donors, and they typically do not need to take any medication to sustain their remaining kidney. “A lot of people are fearful of doctors,” adds Hendricks. “Especially older patients.” For Black donors, committing to giving away an organ means breaking the connection between this established medical procedure and racially motivated instances of medical malpractice throughout history, which range from the plundering of Henrietta Lacks’s cancer cells to the 40-year government study of syphilis for which 399 Black men in Alabama were test subjects.
The need for Black living donors is acute because while Blacks make up 13 percent of the population, they account for 35 percent of people with kidney failure. (The leading causes among Blacks are diabetes and high blood pressure, problems that they suffer from at much higher rates than whites.) Currently, Blacks make up 28.5 percent of wait-listed kidney-transplant candidates but just 12.9 percent of organ donors.
Compounding the problem: Black patients are frequently incompatible with a donor population that skews white. (The immune-system genes of donor and donee must be similar, and that often rules out interracial donations.) Almost a decade ago, UAB launched the Incompatible Kidney Transplant Program, a pay-it-forward system in which a person gives their kidney to a stranger in need in exchange for an organ for their loved one. Since then, this kidney chain has prolonged the lives of 126 people. “Still, there aren’t enough donor organs available to get all those patients transplanted,” says Jayme Locke, M.D., M.P.H., the director of UAB’s Comprehensive Transplant Institute. “Living donation can help narrow that gap.”
Dr. Locke is also leading a team that is pioneering xenotransplantation—animal-to-human transplants—and earlier this year, a team at UAB performed the first-of-its-kind transplant of a genetically modified pig kidney to a brain-dead person. UAB hopes to gain FDA approval to shift into living people in a clinical trial later this year. “This represents a paradigm shift in xenotransplantation, which is arguably the best solution to the organ-shortage crisis,” says Dr. Locke.
But until the process is approved, living human donors, such as the three volunteers featured here, are the best solution. They found that by sacrificing a part of themselves to save another, they could gain more than they ever expected.
BRANDON WALLACE, 37
IT consulting engineer; donated to his father, Nathaniel, 64, in 2018.
Alpharetta, Georgia
Lynsey Weatherspoon
A couple years before I was transitioning out of the Air Force, my dad came to me and said he was having issues with his kidneys. I just remember thinking, Oh, he’s 64, retired Army. He’ll get the free medical care, and it’ll all be taken care of. But then as time went on, he came to me and said, “My kidneys are failing, and I may need you to be a donor for me.” Then maybe six months into my new job, he said, “We’re gonna need to do this.”
He put himself on the donor list, and I psyched myself out. I started Googling all kinds of things about people with one kidney, what that would mean in terms of my life expectancy and stuff like that. Then I got nervous about my dad’s body possibly rejecting the kidney. Dr. Locke and her team helped clear up the confusion and assured me that I could live a normal life after donation as long as I was disciplined about my health.
I’m the kind of guy who ate whatever—burgers, steak—and could just burn it all off in the gym and not gain anything. And I liked to smoke the occasional cigarette when out drinking with friends. But there was no way around the obvious: To change my dad’s life, first I’d have to change mine.
The day before surgery, January 20, 2018, I go to his house in Birmingham, and it’s just a good family moment. The day of the surgery, at one point it’s just me and my dad, bantering and messing with the people at the hospital. That calmed me down a lot and was just a reminder that Hey, I love you, and you’re the only person in the world I would do this for.
The scars were a bit gruesome at first. I have one in my groin area that looks like a C-section scar and two smaller ones on the left side of my abdomen that look like bullet wounds. I can still feel the scar tissue underneath. I’m running again now, hitting the gym, and eating lots of salads and lean protein. I’ve lost about 15 pounds and feel good.
My dad’s doing excellent, too—but he’s still old. I rag on him about that all the time. But I’ll tell you: The one thing this experience gave me was an early kick in the butt. It forced me to make better decisions about what I’m eating. But I’m grateful to be in my late 30s and deliberate about my diet when I could’ve been like my peers and kept kicking this can down the road. Really, there’s no good reason not to stay healthy. You just never know who else might depend on it.
TAVARES TAYLOR, 44
Independent contractor; donated to his girlfriend, Sophia, in 2018.
Birmingham, Alabama
Lynsey Weatherspoon
My girlfriend had nephrotic syndrome [a disorder that causes your kidney to pass too much protein in your urine]. After she was on dialysis for about a year, I decided we weren’t gonna take the chance of it getting worse.
I am healthy. I play basketball and swim. I don’t drink or smoke. Let me give her a kidney. Since it turned out I have the type of kidney that I can donate to anybody, doctors encouraged me to do a three-way swap: give my kidney to another person in exchange for one for my girlfriend.
I had my doubts about the potential impacts on my long-term health. My mother asked me not to do it; she was against it. “What if one of your children needs it?” she said. What helped me get over my fears were the classes we did beforehand. We’d gather on Wednesdays for two hours to go over everything. There were 14 other people there we got to meet and trade experiences with. It was beautiful.
The surgery itself was smooth. The next day, I was walking around. After two weeks, I was back to 100 percent. My girlfriend’s doing great—running her own custom T-shirt shop, got to see one of her kids graduate from college, and the other one’s about to graduate.
I got to meet the person who received my kidney, a 22-year-old white girl. (A Black guy gave my girl his kidney.) Meeting her was a wonderful experience, and every Sunday we trade check-in text messages. To any person who has doubts, I would say take the classes—learn everything before you make your decision. You don’t know who it might help.
LOUIS EDWARDS, 60
Surgical technologist; donated to his sister Brenda, 65, in 2019.
Valdosta, Georgia
Courtesy Louis Edwards
My oldest sister, Brenda, had a kidney condition that was growing increasingly worse. Being a nurse herself and trying to get out ahead of the thing, she called me and asked if I’d think about donating. It threw me for a loop, of course. I love my dear sister, and we always had a special relationship. So I thought about it and figured, Why not? I had life insurance in case anything happened to me. My daughter and wife, as much as they wanted to help my sister, were really apprehensive.
It helped that this organ we were considering, I had two of them. I was pushing 58, but other than some sharp back pain, I was in great health, which I attribute to good genes and a long career in the Air Force—where you had to stay in top shape.
Leading up to surgery, there were a lot of meetings,
a lot of poking and prodding. During an MRI, they found a six-centimeter stone in my kidney. They put their heads together to see what to do about it. Once I went under, they tried to perform a cystoscopy, going through the urethra, but they couldn’t remove the stone. So they just left it and gave it to her with the kidney.
But what’s crazy is ever since the kidney came out, I haven’t had any back pain. My sister hasn’t had any issues either; she’s doing awesome. When I see those [surgical] scars, it’s like a badge of honor. It just kindled an even closer and loving relationship between us.
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