Kidney Transplant from Living Donor Ends Alport Syndrome

Close friend’s gift brings family of teenager joy

Blake and Brendan ConnerBlake Conner was thrilled when his older brother and best friend, Brendan, found a matched donor and received a new kidney in September 2017. But his and his family’s joy weren’t yet complete. Both brothers were born with Alport syndrome, and Blake needed a kidney, too.

The brothers lived what they describe as a very normal childhood with their oldest sibling, Blaine, and mother, Sherri. While they knew chronic Alport syndrome would one day lead to kidney failure, requiring dialysis or transplant, they managed the condition for years by carefully monitoring their diets, reducing their potassium and phosphorous intake. They were students and athletes, with Blake cultivating a love of baseball and talent on the pitcher’s mound.

Blake’s passion for baseball proved rewarding in multiple ways. He became close friends with the son of his Little League coach, Colby Horn, a man who would become a friend, a father figure and – eventually – Blake’s living kidney donor.

“I’d had pretty good luck watching my diet over the years and did almost everything I wanted to,” recalls Blake, 19. “But kidney disease is a sneaky disease. You can feel pretty well, but behind the scenes, your kidney function is failing.”

Along with kidney failure, Alport syndrome causes vision issues and hearing loss. Blake began wearing hearing aids. Fatigue became an increasing problem as he neared high school graduation. As he began college at Maple Woods Community College, continuing to practice as hard as he could on the baseball team, Blake’s kidney function fell to 12 percent, considered stage 5 kidney failure. His need for a new kidney was growing urgent.

The transplant journey

Blake’s care team at The University of Kansas Health System placed him on the organ transplant waiting list. But patients can receive treatment faster and do better for longer when healthy kidneys are provided by living donors.

Blake and his family began the tough task of seeking a donor. They used language from the National Kidney Foundation’s “Big Ask, Big Give” campaign in a Facebook post, as Brendan had done. Meanwhile, Colby called the health system transplant team and asked for an evaluation. He didn’t tell Blake.

“I’ve known Blake for more than 11 years,” Colby says. “He’s spent as much time at our table as he has at his own, and I’ve hauled him all over the place. He’s like a son to me, and if I could do this for him, I knew I would.”

Colby proved a match and was ready to schedule immediate surgery, but the transplant team required further testing. Colby’s physical ability to donate was important, but so was his psychological readiness.

“We evaluate all of our donors fully, both medically and psychosocially,” explains Melissa Fowler, RN, living donor nurse coordinator for the health system. “Potential donors meet with a living donor advocate, a licensed social worker, at their medical evaluation appointment. Donation is a blessing, but it can have an emotional impact. We want to make sure our donors are in the best of health and that the decision is right not only for the recipient, but for the donor, too.”

“I was ready to move, but the team was extremely thorough,” Colby says. He appreciated that. He also took time to ensure his family – his wife, Amy, a nurse, and their four children – supported his decision. “They had a few concerns, but everyone was very much in favor.”

Blake ConnerAn emotional talk

Once Colby’s wish was fully approved by both his care team and family, it was time to share the news with Blake. Colby invited him over to talk.

“It was a bit emotional, but also exciting,” Colby says. “I set him down and told him, ‘They tell me you need a kidney and that mine will work for you.’ He was completely surprised. He said, ‘I know I shouldn’t accept this, but I know you, and I know you’re going to do what you want to, so thank you. Thank you.’ We planned the surgery.”

Successful surgeries

On May 29, 2018, physicians removed a kidney from Colby and transplanted it into Blake. The gift gave Blake a new chance at living the full and active life he wanted. Though recovery wasn’t as simple as Blake and Colby had allowed themselves to hope, both are doing well and building strength day by day.

“The doctors reminded me not to be foolish, that I was almost 46, not still 26, and that I needed to give myself some time,” Colby laughs. “I am medically just fine, but it was a major surgery. I am steadily improving and my energy levels are coming back. If the way I feel today is as good as it gets, it’s as good as I need.”

Blake, too, is recovering well. He experienced some pain, particularly when walking, for longer than he expected, but finds that a small price to pay for the new future he now has before him.

“What Colby did for me is such an important reminder to be thankful for what’s given to you in life,” Blake says. “He motivates me to do my best at everything I do, both for my family now and for the family I’ll have in the future. I want to do my best today so I can tell my future family I did. Life is such a gift.”

Mutual rewards

Colby is grateful he had the opportunity to support Blake’s return to good health and emphasizes that giving is as meaningful to the kidney donor as to the recipient.

“I have no regrets,” he says. “If you have the opportunity to bless someone with the gift of life, I guarantee it will be an even greater blessing to you.”

Colby’s gift made an impact on the transplant team, too.

“Colby has given Blake the opportunity to be Blake – to play baseball, hang out with friends and family, continue his college education and achieve his future dreams,” says Fowler. “Our team is so grateful to him. Colby’s and Blake’s lives are forever bonded through Colby’s gracious act.”

Colby hopes so, but also jokes that their strengthened father-son relationship may come with a little more than Blake bargained for. “I have even more of a vested interest in this kid now,” he teases. “If he’s out there somewhere, doing something, and I call him, I’m going to expect to hear back from him.”

“That’s what families do,” says Blake. “And Colby was already family.”