Deryl & Tanya: Contributing to Research Toward Achieving Equity in African American Kidney Transplant Outcomes

Cousins Deryl and Tanya are participating in the APOLLO study, which aims to improve African American kidney donation and transplant outcomes.

Deryl didn’t learn that he had chronic kidney disease (CKD) until he was in his forties, but knowing what he knows now, he believes that there were hints of it throughout his life. Since he was a child, he says, “I knew something was wrong…. I believed my kidneys were not functioning properly based on personal frequent occurrences. I remember my mom asking if I wanted to go to the doctor. I always said no because of the embarrassment of the situation.” His life completely changed in 2020, after a severe case of COVID-19 when he developed end-stage kidney disease (ESKD) and needed a kidney transplant. Hope soon came from his cousin, Tanya, who was ready and willing to donate one of her kidneys. Remembering when she learned of her cousin’s need for a kidney, she says, “I think that it was just kind of a no-brainer for me to say, ‘Oh, OK, well I’ll get tested.’” The subsequent journey, including their participation in NIDDK’s APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO), resulted in a new beginning and a family’s passion to advance health equity in kidney transplantation.

Learning about and Living with CKD

Having played basketball for most of his life and now coaching a high school basketball team in Highland, Illinois, Deryl has always lived an athletic lifestyle without any other major health issues. He remembers receiving his first bit of insight into his kidney disease as a transfer student athlete at Kansas State University. “The only thing I knew was when I was in college the doctor said, ‘You have protein in your urine,’” he remembers. “The doctor said that I could have a more serious problem down the line. I was told I had [high] blood pressure also,” he says. “I was told to try and eat certain food items in moderation. It was difficult….” Overall, though, he says, “I didn’t know what it really meant and the effects that it could cause. There was no cure.” Detection of protein in a person’s urine can be an early sign of kidney disease. However, Deryl did not let that stop him. He recalls telling himself, “You’re an 18-year-old young man and student athlete. Only thing that I know is all my coaches told me to play hard, and I believed playing and working hard was a cure-all.”

And that is exactly how Deryl lived a lot of his life. After college he went on to have a successful professional basketball career for over 10 years. In fact, it wasn’t until he went to his doctor for a routine exam as an Indiana State University basketball coach in his forties that he learned he had kidney damage and was diagnosed with CKD. The diagnosis was important to Deryl: “When you have a condition, it’s important to have knowledge and, if possible, treat it. In my case, I was affected by CKD on and off the court.”

While kidney damage due to CKD can be slowed through lifestyle changes like blood pressure management, weight loss, and diet changes, there are currently no known ways to reverse CKD-related damage. Deryl made many adjustments to manage his CKD, although he says that it wasn’t easy. His hard work changing his diet paid off, though, and he managed to avoid needing dialysis. All of that changed when, in 2020 at the height of the COVID-19 pandemic, Deryl contracted the illness, which resulted in his ESKD.

The Long Road to a New Kidney

Tanya, Deryl’s cousin, works as a lawyer and has dedicated her life to providing justice to her community as the head of a civil legal aid clinic in Chicago. Tanya says that as her parents’ only child, she, Deryl, and his sister “grew up more like siblings than cousins.” So, she sprang into action when she received a call from his sister saying that Deryl needed a kidney transplant. Deryl’s sister already knew then that she wasn’t a match to donate a kidney to her brother, so Tanya decided to get tested.

When Tanya learned of her cousin’s need for a kidney, she says, “I think that it was just kind of a no-brainer for me to say, ‘Oh, OK, well I’ll get tested.’”

Matching a living donor to a transplant recipient is a complex, multi-step process. It involves tests to assess the health of both donor and recipient, determine blood type compatibility, and, most critically, to predict the chance of the recipient’s body rejecting the donor organ. Once Tanya learned she was a match, she and Deryl’s sister waited to tell him, not wanting to get his hopes up prematurely. “We just wanted to make sure that there was a plan, that I had gone through all of the education, that I had passed all the things that I needed to pass,” Tanya says.

Despite finding a donor fairly quickly, it would take over a year before Deryl could receive his cousin’s kidney. Deryl’s medical team found that his parathyroid hormone levels were elevated—a complication that can commonly occur in people with ESKD—and wanted his levels to decrease before they could safely perform the surgery. In the interim, he had to begin dialysis. “I was on dialysis for 14 months,” says Deryl. “We were not expecting me to be on dialysis that long.” He remembers the challenges of maintaining a normal life during this time: “I did dialysis from 5:00 a.m. to 9:00 a.m., and then I went to work, coached my high school team, and ran my DJ business with bookings on the weekends. And there were days that I was super weak at work and barely making it, so it was very difficult.”

In 2021, Deryl finally got the OK to undergo surgery. To Tanya and Deryl, even the date of the surgery was a good sign. “They give us a surgery date of December 1, which happens to be our maternal grandmother’s birthday,” Tanya says. “We all see this as a positive sign from God—it’s all going to go well.” Both of their surgeries did, indeed, go well. When speaking of his medical team who performed the transplant, Deryl says, “You ever seen the ‘Dream Team’ in basketball? They became my Dream Team.”

APOLLO: Gaining Insight and “Closure” Through Knowledge

It was in the time leading up to his kidney transplant surgery that Deryl and Tanya first learned about APOLLO. The Transplant Center at SSM Health Saint Louis University Hospital where Deryl received his transplant was a Clinical Center participating in APOLLO. He spoke to the Principal Investigator at the Center, Dr. Krista Lentine, who provided information about enrolling in the study. Speaking about his decision to enroll, Deryl recalls thinking, “Maybe I can help someone else. Maybe someone else with kidney disease.” He also says that he “started to want to know even more” regarding his kidney health.

The primary outcome measured for APOLLO is the success or failure of participant kidney transplants— as tracked by electronic medical records and the United Network for Organ Sharing—over a span of up to 4.5 years. Participant visits are infrequent and consist of an initial visit and an additional visit to collect blood and urine samples, all of which are saved in the APOLLO Central Laboratory. These samples will allow APOLLO researchers to assess secondary study measurements of kidney health, such as the presence of protein in the urine and changes in participants’ estimated kidney function.

Speaking about his decision to enroll in the APOL1 Long-term Kidney Transplantation Outcomes Network (APOLLO), Deryl recalls thinking, “Maybe I can help someone else. Maybe someone else with kidney disease."

Another important component of APOLLO is providing information and health education to the patient community about APOL1 variants and the risk for kidney disease. Though study participants have the opportunity to learn their—or in the case of deceased donors, their family member’s—APOL1 genetic results 3 to 4 years after their enrollment, they are not prevented from getting tested themselves sooner outside of APOLLO. It was through this outside testing that Deryl learned that he had received a high-risk APOL1 variant from both of his parents. “It gave me closure,” he says, referring to now having a better understanding of the medical issues with his kidneys that he’d experienced throughout his life.

Speaking about her thoughts on the impact that APOLLO could have on outcomes for African Americans with kidney disease, Tanya says, “For me, it’s huge, because of the work that I do.” She views her participation in APOLLO and her and Deryl sharing their story as a type of justice for the African American community, saying, “Justice gets construed as what we see in the criminal justice system or in a court of law, but justice takes many forms.” She continues by saying that African Americans “have generations of not trusting our health care professionals, so I’m hoping that studies like this will give people some more agency.” The advice that she would give anyone considering donating a kidney: “Get information. Be educated about it and not so quick to assume that you know everything there is to know about donating.”

Throughout his journey with CKD and ESKD, Deryl saw the value of learning all he could about his own health. Providing his advice to anyone living with kidney disease, he says that people should learn and be informed about their own health, as it is important “to be front and center on your medical situation.” Since his transplant, he now has much more energy to do the things he loves, like spending time with his family, playing and coaching basketball, and sharing his love of music through his side job as a DJ. His days look a lot different now. “This morning,” he says, “I got up at 4:45 a.m. I played basketball from 5:30 a.m. to 7:00 a.m. I came back home… showered, went to work, got in by 7:45 a.m., worked a full day, got on the phone with you, will talk to a couple clients tonight, [my son’s] got football later today…. I'm able to power right through the day.”

The participation of Deryl, Tanya, and many others in APOLLO may one day lead to more organs for transplants, improve the health of people with ESKD, and advance health equity in kidney transplantation.