The Importance of Asking for Help: Leon’s Story
In 2009, I had a new doctor and was getting all the workups you get when you have a new physician, and they noticed elevated levels of creatinine in my urine. They did a kidney biopsy and told me I had FSGS, which is focal segmental glomerulosclerosis. My kidneys were only functioning at 39%.
I was 25 at the time, and this was the first time I had heard anything related to kidneys, for myself or my family. I knew that Alonzo Mourning had FSGS and had to retire because of it, so that was always my reference point—I’m an athletic director so there was that sports connection. Later I found out that my mom was born with one kidney that wasn’t developed all the way, but she hasn’t had any issues with her kidneys.
I asked if my kidney function would improve, but they said no, it would only get worse over time and that I would need a kidney transplant within 10 years. They put me on a course of steroids and blood-pressure medication to stabilize my kidneys. I had never had high blood pressure before, but I guess some of the medications can increase your blood pressure.
Meanwhile, I moved from Buffalo to South Carolina, then from South Carolina to Georgia, and continued to do what I needed to do to keep my kidney function up.
In May 2022, my doctors told me I was at 19% kidney function and we needed to start looking at getting me on the list for a kidney transplant. I got an appointment in July at Piedmont Hospital to be evaluated for a transplant. I did all the tests, then there was a waiting period to see if I was a candidate.
Meanwhile, at the church a family friend attends, one of the elders had had a kidney transplant last April. She thought we would have a lot in common, so he connected with me and asked about my story. After I told him my story, he said, “You haven’t shared this with anyone publicly. Why?” I told him I was a private person, and that it’s the ultimate vulnerability to tell people you have a problem that you can’t fix. He said he felt the same way, that he did not want to be an object of pity, but that you have to get your story out there.
I mulled it over for a while. I hadn’t told anyone except immediate family, but I eventually wrote a text message to tell my friends, then I put it on social media. The response was overwhelming. People started reaching out to me saying, “thinking of you,” “praying for you,” “what can I do?” At the time, I hadn’t gotten any information from Piedmont on whether I was a candidate.
Once a coordinator contacted me and told me they thought it was going to happen, I connected with Teri Bennett, who was assigned as my coach and helped me set up my microsite. She advised me on how to tell my story to draw people in, including adding pictures of my family and explaining the “why”—why people should donate a kidney to you, why a transplant is important to you—so people can understand your situation and develop a connection with you.
In October I was notified that I was on the list for a transplant. Two weeks later, I had a friend from Maryland who wanted to donate to me. In her initial evaluation, she was told she was a perfect match. When she got evaluated here, they told her no because she had kidney issues. It was kind of an emotional rollercoaster. It’s hard to think you have a match and then you don’t. After that, I told people, respectfully, not to tell me anything unless they were in the final stage.
A month after I was listed, Alan Reeves came to my school. He has kids that go to my school and he had reached out to me in August, saying, “Wish you luck, hoping everything goes well.” It was nothing more than that—he never indicated he was getting tested.
There was a meeting scheduled at my school. I walked into the room and my mother-in-law was there, and all the support staff and coaches were there. I didn’t even notice Alan sitting there. I was thinking it was about the athletic award I had won. Then Alan walked over to me and they announced he was going to be my donor. I was floored.
I know the list for a kidney transplant in Atlanta is very long, with wait times of 8–10 years. I wasn’t anticipating getting one so quickly. I had the transplant in February, just four months after I was approved to go on the list. I’ve talked to a lot of people and it’s very unprecedented and fortunate for me, and it was all possible because I decided to share my story.