'A gut punch.' Stratford native needs lifesaving kidney transplant after prior match falls through
Stevens has Focal Segmental Glomerulosclerosis (FSGS), a rare genetic disease that causes scarring of the kidneys and decreases the organs’ abilities to function.
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Justin Stevens, 36, of Stratford, planned to be recovering from a kidney transplant right now. Instead, Stevens needs a lifesaving donor more than ever and is sharing his story in hopes of finding one.
Stevens has Focal Segmental Glomerulosclerosis (FSGS), a rare genetic disease that causes scarring of the kidneys and decreases the organs’ abilities to function.
He was diagnosed in 2009 while attending Penn State University, where he was on the swim team.
Stevens underwent routine medical monitoring as a college athlete, which led to the diagnosis his junior year.
Stevens told News 12 doctors managed his disease with medication for 15 years. But at the beginning of this year, things took a turn.
“My overall kidney function got below 8%,” Stevens said. “That's when they notified me that I need to start the dialysis process and really start looking for a donor.”
It takes years to move to the top of the kidney transplant waiting list, so Stevens best bet is to find a living donor. But he's used to helping others, not the other way around. Stevens works as a financial planner, helping people plan for the future, and in his spare time, he dedicates himself to community service. He's a vice president of the 100 Black Men of Stamford organization, mentoring young people and working to create positive change. Stevens is also vice president of the southern Connecticut chapter of the Penn State Alumni Association and served as chair of the Penn State Alumni Council.
“It was hard to finally get to that point to, you know, be more vulnerable and be more public about the health situation and really my need,” Stevens explained, regarding his initial hesitancy to share his story. “The emotional toll of that was definitely a hurtle I had to overcome.”
But with the help of loved ones, Stevens embarked on a social media effort asking people to sign up for the donor registry and consider getting tested.
“Ultimately a friend of mine was identified as a match, so we were really excited. We had the surgery scheduled,” Stevens stated.
It was supposed to be last week. But during one of the final reviews, doctors discovered a medical issue with the donor.
“Finding a match and then at the last minute, you know, finding out the surgery is cancelled, was definitely a gut punch,” Stevens admitted.
For now, Stevens continues to have at-home dialysis eights hours a night—something that puts a strain on his time and energy. But he’s still staying positive as he begins the search for a life-saving kidney transplant all over again.
“We thought we were at the finish line, but now we're kind of restarting this push to get the information out,” Stevens stated.
News 12 met Stevens through a Stratford police detective who also needed a life-saving kidney transplant. In January, we shared the story of Jennifer Murolo, who suffers from polycystic kidney disease. The police department rallied around her and hosted an organ donor screening event in hopes of finding Murolo a living donor match. Over the summer, she successfully underwent transplant surgery. Murolo is still recovering but wanted to pay it forward and help someone else get the gift of life, so she connected News 12 with Stevens.
To access Stevens' profile on the National Kidney Registry, sign up to be a donor or learn more about the process, click here.
