Keeping hope alive: the living donation story of Jonathon Seidl and Kenneth Cook

Jonathon Seidl's first exposure to kidney disease was as a child, watching his stepfather struggle with being on dialysis and then looking for a kidney donor. "A lot of people got tested for my stepdad," Jon said. "[I remember feeling] a little hopeless and thinking 'my gosh, everyone is getting tested, and nothing seems to be working or a match.'"

Eventually, Jon's aunt got tested and donated her kidney to his stepfather, but the fear and anxiety his family had been feeling stuck with him for years to come. So, when Jon learned about Kenneth Cook's story and how he desperately needed a new kidney, he didn't hesitate to step up. "It was kind of a no-brainer," he said. "I've been on that side where you're thinking 'if only someone would come forward.'" Jon also said that as a person of faith, he felt drawn to help. "My faith calls on me to be selfless, so if there's an opportunity to do that, it just makes sense."

For Kenneth and his wife Debra, finding a kidney donor for Kenneth was crucial after the couple saw the toll dialysis took on him both physically and emotionally. "When I first experienced kidney failure, I started on peritoneal dialysis," Kenneth said. Eventually, Kenneth had to switch to in-center hemodialysis, which meant it would be difficult for him to continue working. "I knew what a strain that would be on him with trying to schedule the appointments and I could see the devastation in his face," Debra said. She started to actively look for a living donor for her husband.

Debra first turned to her family to find a donor, but unfortunately, no one was a match for Kenneth's blood type. Then, after a friend of her son's initially was willing to donate, he was told by doctors that he could not go through with the procedure due to concerns about his heart health. Devastated, Debra had to go back to the drawing board. She decided to call up a colleague whose wife had recently had a successful transplant from a living donor to ask his advice on what she should do.

That call turned out to be fateful. Her colleague, also named Kenneth, mentioned that he and his wife had found a couple of people who were willing to donate, and he gave Debra the name of the person they didn't use: Jon Seidl. "Kenneth told me all about Jon and said he was such a nice guy," Debra said. "I asked him to please call Jon and tell him how desperate we are and see if he would be willing to donate."

Not long after this call, Debra heard from Jon. "He said he would be happy to donate to my husband, and at that time it was like angels were all around me," Debra said.  "Jon pretty much took over from there and took so much pressure off of me."

However, after receiving the joyous news, the Cooks were soon hit with another heartbreaking setback. Kenneth discovered sores on both of his feet, and not long after that, he learned that he would need to have both of his legs amputated, forcing doctors to declare him unfit for transplant surgery for the time being. Kenneth was devastated, and when Debra called Jon to let him know, they both were worried that Jon would back out or decide to donate to another person instead. They were wrong.

"Before I could even get my sentence finished, Jon said, 'I will wait for him — this is his kidney,''' Debra said. "[As a result of this], Jon will always have a place in our hearts — and a kidney in my husband." For Jon, it was never even a consideration to give his kidney to someone else. "The idea that I had committed to give him a kidney and then because of his health complications, I would give it to someone else never even crossed my mind," he said. "It was an honor [to donate to Kenneth]."

Once Kenneth was cleared to receive the transplant following the amputation, the surgery was performed in October 2020. Both men responded well to the surgery, and Jon made a full recovery in 2-3 weeks. "My back was sore and there was a lot of constipation coming off of the anesthesia, but other than that, I really didn't notice anything," Jon said.

For Kenneth, the physical results were almost instantaneous, with him urinating for the first time in over five years just an hour after the surgery. "The one thing that I say — and I promise I've said it 1,000 times since the transplant — is that I will never complain about having to go to the bathroom again," Kenneth said with a smile.

Beyond the physical effects, Kenneth said the impact the surgery has had on his emotional wellbeing is incredible. "It gave me the mental tenacity to want to keep on living," he said. "[The surgery] gave me something to look forward to every day. I was able to go back to work and be a normal person again, and despite having both legs amputated and walking with a cane, I've got joy in my heart."

When asked what he would say to people who are currently on dialysis, Kenneth emphasized the importance of hanging onto hope. "When you walk into a dialysis clinic, everybody has the same look on their face. They all have the same emotions and are in the same state of mind," Kenneth said. "But [people on dialysis] must do everything they can to keep hope alive, because once you lose your hope of getting a transplant and getting better, you start to deteriorate mentally. When you combine [the mental deterioration with the physical deterioration from dialysis], life will begin to shorten itself for you."

For Jon, his biggest advice to people who like the idea of donating, but are uneasy about taking that first step, is to ask questions and get educated. "My wife was nervous initially [about me donating], so the two of us did our homework," he said. Jon was also able to share his aunt's story of living a healthy, normal life after donating a kidney, which research shows is the case for most living kidney donors. "Ask the questions, but then [become a living donor]. You really do end up living a very normal and rewarding life afterwards."

Click here to watch Jon, Kenneth and Debra discuss their living donor story during AKF's Kidney Action Week 2023.

To learn more about becoming a living donor, visit our website.