How the NBA star bounced back from kidney disease

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NBA legend Alonzo Mourning is raising awareness of genetic kidney disease after bouncing back from a life-saving kidney transplant. Image courtesy of Vertex
  • NBA Hall of Famer Alonzo Mourning shares his journey with kidney disease.
  • After undergoing a kidney transplant in 2003, the legendary basketball player returned to the NBA in 2004.
  • Mourning leads the Power Forward campaign to raise awareness of genetic kidney disease.

Legendary NBA Hall of Famer Alonzo Mourning was a key player for Team USA at the 2000 Summer Olympics in Sydney, Australia. He helped the team win gold.

However, during the Olympics, he began to experience swelling throughout his body and a lack of energy.

“I had to go back and forth [between Sydney and home] because I promised my wife at the time that I would be back for the birth of my daughter, and [while flying] I noticed I had nephritis – swelling in my legs,” Mourning told Healthline.

The Olympic team doctor initially believed that sitting on the plane for long hours caused the swelling, and Mourning pushed to play.

However, after the Olympics, a routine physical exam detected abnormalities in his kidneys which led to the diagnosis of a rare protein-releasing kidney disease called focal segmental glomerulosclerosis (FSGS). The disease causes severe scarring that leads to permanent kidney damage and kidney failure.

“It’s amazing what the body can do when you train it to ignore things as professional athletes to come back and play because if I had known what was going on in my body at that time, I probably wouldn’t have played,” Mourning said.

Mourning learned that her condition was caused by the APOL1 gene and that people who have two copies of the gene with certain variants may have a higher risk of developing APOL1-mediated kidney disease (AMKD). FSGS is a clinical presentation of AMKD.

Although there are risk variants that lead to disease, Dr. Susanne Nicholas, a member of the American Society of Nephrology Kidney Health Initiative’s APOL1 Project Steering Committee, said that having both risk variants does not mean that a person will develop AMKD.

“You’ll need another activating factor, which is currently not fully known but may include inflammation or another environmental factor,” she told Healthline.

She added that AMKD primarily affects people of African descent. Additionally, compared to white Americans, blacks or African Americans are more than 3 times more likely, and Hispanics or Latinos are 1.3 times more likely to have kidney failure.

Nicholas recommended asking your doctor to get tested for the APOL1 variant if you suspect you might be a carrier due to African ancestry, especially West African, Afro-Caribbean ancestry, a diagnosis of AMKD in a family member or a family history of progressive kidney disease.

“Early detection allows the person at risk for kidney disease progression to follow guidelines that reduce the risk of kidney disease progression, under the direction of their doctor,” she said.

Dr. Maria DeVita, chief of nephrology at Lenox Hill Hospital, noted that “it is now relatively easy to send saliva samples to one of two specialty labs for genetic testing.”

Once Mourning was diagnosed with kidney disease, he underwent genetic testing and learned that he had APOL1.

“The only thing we can do is be an active participant and get tested and…if we have it then we can process an understanding…and see our doctor and figure out how we can make the right decisions for our long-term health.”

Mourning worked with doctors to find the best way to manage her condition. Then and still today, there is no FDA-approved treatment for AMKD.

“Treatment focuses on optimizing blood pressure and reducing proteinuria [high levels of protein in urine] with medication,” DeVita said.

At 6-10 and 240 pounds, Mourning was a unique patient when first diagnosed.

“I was a bit of a test rat for my doctors because they had never dealt with anyone my size and treated me the way they treated me,” he said.

He missed the entire 2002-03 season with the Miami Heat as he underwent a kidney transplant in 2003.

Although genetics contributed to his illness, it also helped save his life.

“The beauty of it all is that I had a living related donor; my second cousin (my grandmother’s brother’s son) is the one who donated his kidney to basically protect my life,” Mourning said.

To his knowledge, he is the first person in his family to have chronic kidney disease. He hopes sharing his medical history with his family will help them stay healthy.

“Family history is very important, so everyone should ask their loved ones if they’re in the family tree,” DeVita said.

For Mourning, learning about his condition helped ease his fear. He asked the doctors to explain what they knew so he would know.

“[It’s] no different than when you have a test to take, and you walk into the classroom, and you know you have a test to take, and you haven’t studied. You’re scared, you’re not sure, you know you’re going to fail, but if you’re studying for the test, you feel so prepared and confident for this test,” Mourning said.

Once he educated himself, he felt more confident dealing with kidney disease and prepared to move on, which he did with strength. In 2004 he was back in the NBA and in 2006 he led the Miami Heat to a world championship.

“And then I started thinking about the other 37 million Americans…statistically speaking, who have chronic kidney disease,” Mourning said.

Over time, Mourning felt empowered to help others dealing with kidney disease. In addition to his role as vice president of programs and player development for the Miami Heat and founder of The Mourning Family Foundation, he uses his free time to advocate for kidney health.

For his latest initiative, he has partnered with Vertex and its Power Forward campaign to raise awareness about AMKD.

“Being on this platform, [I’m] encouraging millions of people to take an active part in their own health; none of us can sit and wait for someone to do it for us. We all have to take that first step,” he said.

By speaking out, he hopes others will learn their family medical history, seek genetic testing when appropriate, learn about kidney disease and see a doctor regularly.

“You just can’t wave a magic wand and expect things to come to you. You must be an active participant and consult [doctors] to figure out what’s going on with your body, especially if you have fatigue or lethargy or swollen legs, things like that that I was dealing with,” Mourning said.

For those currently dealing with kidney disease, he said to dig deep physically and mentally.

“If you give up mentally and don’t think you can help yourself, then I’m marching to the test [that that’s not true] because you just have to make all the necessary adjustments, whether it’s diet, exercise, drinking enough water, cutting out salty foods – there are a lot of different things that you can do to make adjustments as you go regardless of the medical regimen your doctors have placed on you,” Mourning said.

December 19, 2022 marks nineteen years after the kidney transplant for Mourning. On this day, he plans to celebrate the importance of organ donation and recognize all the adjustments he has made over the years, such as following a mostly plant-based diet, exercising regularly and avoid drugs.

“I hope I can celebrate another 19 years,” he said.