St. Louis Public Radio | By Emily Woodbury
John “JT” Thomas was a healthy 20-year-old in 2011. But at that year’s family Thanksgiving gathering, he found that he couldn’t even finish his first plate of food. His appetite was gone — and he was increasingly lightheaded.
His physicians had a chilling response to his symptoms, one that he recalls even today: “You shouldn’t be able to walk right now.”
“It was a complete shock to the system,” Thomas recalled on St. Louis on the Air.
Soon after, Thomas was diagnosed with focal segmental glomerulosclerosis, a disease in which scar tissue develops on the small parts of the kidneys that filter waste from the blood.
For more than two years, Thomas spent 12 hours every week on dialysis.
“That’s a total of 1,464 hours. If you’re counting, that’s the equivalent of 61 entire days,” Thomas said. “That’s two months of my life that was stolen from me by something that I had no control over.”
Thomas needed a new kidney, so he posted the details of his situation on social media.
“At that point, it was up to the people seeing the post to act, and I just had to be patient,” he said.
His patience paid off. After several false starts with other potential donors, a high school acquaintance reached out. Niki Nickeson had left the St. Louis area. But something about Thomas’ story caught her attention — and she couldn’t stop thinking about it.
“I remember I told my roommates, ‘You guys, this guy I went to high school with is in kidney failure,’” she recalled. “‘That’s insane. What a crazy thing to have happen at this time of our lives.’”
A little more than a year later, after seeing another post and realizing she had the right blood type, Nickeson got confirmation that she was a solid match for the donation. She ultimately decided to go through with donating her kidney to Thomas — despite her father’s concern that one day she could have a loved one who required a kidney transplant.
“And I was like, ‘But what if I don’t?’” Nickeson said. “What if I don’t, and this guy just continues suffering — or dies waiting for a kidney?’ And that was that conversation that was like: ‘Nope, I’m doing this. It’s scary, but I’m just gonna do it.’”
Nickeson and Thomas joined Wednesday’s St. Louis on the Air to discuss the transplant process and how the experience has changed both of their lives.
Eight years after the transplant procedure, both Nickeson and Thomas are doing well. Thomas said he makes sure to take his medication, eat well, exercise regularly “and enjoy life.”
“I am obsessed with taking care of this gift for her,” he said. “The only way that I can fully thank her is to live this way — to live with this kind of fervent attitude to care for this transplant — and to help others navigating the process.”
In addition to working for the “We’re United 4 Kidney Health Campaign” through the American Society of Nephrology, Thomas is a patient care manager for the precision medicine company, CareDx.
Thomas also advocates for the Living Donor Protection Act, a bill that would ensure living organ donors have Family Medical Leave Act protections during the transplant process. It would also prohibit insurance companies from denying or limiting insurance coverage to living donors.
For living organ donors, “this is the least we could do,” he said.
Thomas said he was disappointed to see that no U.S. representatives from Missouri have co-sponsored the bill, but he remains hopeful his story will galvanize lawmakers.
“I’m going to throw the gauntlet down to have a conversation with any representative,” he said, “just to get their position and maybe have a conversation of the benefits — not only financially, from the government spending aspect, but from the living experience — that would, hopefully, change some minds.”
“St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is hosted by Sarah Fenske and produced by Emily Woodbury, Kayla Drake, Danny Wicentowski and Alex Heuer. Jane Mather-Glass is our production assistant. The audio engineer is Aaron Doerr.