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The Organ Trail: Living Kidney Donors Mark and Lynn Scotch Share Their Story

Learn how Mark and Lynn Scotch both became living kidney donors and got started on their paths to advocacy.

In early 2020, married couple Mark and Lynn Scotch of Plover, Wisconsin, met Hugh Smith in a restaurant in Natchitoches, Louisiana. The three of them hit it off, as if they were old friends. After talking for an hour, Hugh suddenly got up to leave. Mark and Lynn, disappointed, asked him to stay and eat with them. Awkwardly, Hugh explained it was time for his dialysis therapy, and he needed to go home. Hugh had end stage renal disease, and every night at 8:00 p.m., he performed peritoneal dialysis to replace the function of his kidneys. As Hugh told Mark and Lynn his story, he mentioned he was on a transplant list and looking for a living kidney donor. Mark responded, “Well, I’ll give you one of mine."

Hugh gave Mark his card and the number of his transplant coordinator. The very next day, Mark gave Hugh and his coordinator a call and started the process of becoming a living kidney donor. Inspired by this, Lynn decided to follow in Mark’s footsteps to become a donor as well.

Pedaling for a Purpose

As a prospective living organ donor, Mark completed thorough testing and medical screenings to ensure he would be a viable donor. Because Hugh lives in Louisiana, Mark’s operation would have to be done in the same location, including pre-op and post-op care. As Mark realized how often he and Lynn would have to drive back and forth from Wisconsin to Louisiana, he started to plan out how he would get his regular bike rides in.

“The bike ride was coming together in my mind,” says Mark. “Whenever I do something, I always try to figure out how to get a bike ride out of it. With all these trips going down the Mississippi River, I wanted to ride my bike as much as I could. Whenever Lynn and I travel, I try to get a few hours in on my bike. That’s normal for us.”

For over 20 years, Mark has been an avid cyclist, starting out on his son’s old mountain bike riding singletrack trails. For Mark, bike riding is a stress-relieving hobby that he enjoys immensely. He has ridden his bike long-distance across the country and participates in endurance events and competitions. So, it was natural for him to decide that he would ride his bike as much as he could from Wisconsin to Louisiana.

Acting to Advocate

Mark continued to work with Hugh’s transplant coordinator and research as much as he could about living organ donors and kidney transplantation. Roughly  13 people die each day waiting for a kidney transplant, and there are currently almost 90,000 people waiting for a kidney transplant in the United States alone. As he learned more, his thoughts turned to advocacy. What if he could turn his bike ride from Wisconsin to Louisiana into something bigger?

Mark decided to contact the National Kidney Registry (NKR) to see if they could help him with his advocacy efforts. The NKR led Mark to the National Kidney Donation Organization (NKDO), where prospective donors are connected to mentors devoted to donor education and transplantation advocacy. From his mentor, Mark learned about the NKR’s Voucher Program, which changed everything. 

The Kidney Voucher Program

The NKR’s  Voucher Program works a lot like a paired kidney exchange, where a donor donates their kidney to a different recipient in exchange for a more compatible kidney for their original intended recipient. However, the Voucher Program also allows the donor to schedule donation surgery at a more convenient time for them while prioritizing the voucher holder (the organ recipient) for a living kidney donor through the NKR. Voucher donors are also given precedence for kidney transplant in the rare case they ever need one in the future.

Mark’s mentor from the NKDO explained that through this Voucher Program, Mark would be able to have his donor operation in Madison, Wisconsin, alleviating the concerns Mark and Lynn had about staying in Louisiana for any post-op complications. Having the surgery in Wisconsin meant Mark could stay close to home. The Voucher Program not only ensured that Hugh would get a much better-matched kidney, but also that someone else in need of a transplant would receive Mark’s kidney. Hugh was ecstatic and agreed to become a part of the NKR. So, Mark and Hugh both registered themselves at their nearest NKR-affiliated hospitals in Madison, Wisconsin, and Jackson, Mississippi, respectively. On September 30, 2020, Mark donated his kidney to a stranger in need.

Riding Along the Organ Trail

Both Mark and Hugh’s surgeries and recoveries were successful. Mark’s kidney went to a transplant recipient in New York, and Hugh is doing very well after receiving his kidney from Southern California.

Seven months after Mark’s recovery, he made the bike ride from Madison, Wisconsin, to Natchitoches, Louisiana, a journey of over 1,400 miles. This became the Organ Trail.

While Mark bikes along the Organ Trail, Lynn accompanies him in their vehicle to provide any necessary support. Along their route, Mark draws media attention to spread awareness about living organ donation and the dire need for donors for the thousands of people awaiting a kidney. Since this initial journey, Mark and Lynn have completed many Organ Trail rides, and they are planning their next ride in June 2024 to continue their advocacy work bringing awareness to living kidney donation. This ride will also commemorate Lynn’s more recent kidney donation story.

Continuing the Ride: Lynn’s Story

“I couldn’t think of a single reason why I shouldn’t look into this for myself,” says Lynn, as she supported Mark during his evaluation for eligibility as a kidney donor. Lynn registered with the NKR to become a kidney donor in 2020, soon after Mark. She was also thoroughly evaluated and tested, and once her eligibility was determined, she was ready to donate her kidney in 2020 to the best available match. However, the NKR center where she was registered paused all discretionary surgery due to COVID-19. For the time being, donating her kidney was not an option.

The next year, Lynn was finally scheduled for surgery with a recipient match. However, the night before surgery, the hospital called to let her know her blood platelet levels had dropped, and it was too risky to proceed with the surgery. While she was incredibly disappointed, Lynn was determined to donate. She kept track of her health and was tested to ensure she had no health concerns in order to be ready for surgery whenever the time came.

Months later, a friend of Mark and Lynn’s connected them to Katie Thompson, mom of two-year-old Cooper, who had been on dialysis since he was eight months old. His doctors were searching for a kidney donor for him, and Lynn decided: she would donate her kidney through the Voucher Program and give the voucher to Cooper so he would be a high priority on the NKR transplant list.

On January 10, 2023, Lynn donated her kidney to a stranger in Illinois. On March 2, 2023, Cooper received a kidney that was an excellent match. Just last month, Cooper celebrated his one-year “kidneyversary.” Both donor and recipient are doing wonderfully.

To learn more about the Organ Trail and even ride along with Mark on his upcoming trip, visit Mark and Lynn’s website here: The Organ Trail

 

Publication date: April 2024

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