Scott Johnson knows a thing or two about dealing with adversity.
When he was 3 years old, Johnson was diagnosed with cystic fibrosis, a devastating lung disease that once claimed the lives of most children who had it before they reached their 20s. (Now, thanks to improvements in treatment, more than half of the people with cystic fibrosis in the United States are adults.)
In 2001, when he was 29, the Wilmington resident spent months at UNC Medical Center in Chapel Hill waiting for a double-lung transplant, which he needed to save his life.
While waiting, Johnson wrote a list of things he wanted to do if he survived. The first item was, “Do a triathlon.” Five years later, in 2006, he finished Ironman Florida and became the first double-lung transplant recipient to complete the 140.6-mile swim/bike/run race. By that time, he had also done dozens of shorter-distance triathlons along the way. He went on to participate in the 2007 Ironman World Championships in Hawaii; he didn’t finish, but he did marry his wife, Leanne, three days later in Kailua-Kona.
But he wasn’t done yet.
A New Challenge
Fast-forward to 2020. By then, Johnson had moved on from triathlon to a different sport: stand-up paddleboarding. And he had his sights set on a different kind of endurance event: The Crossing For Cystic Fibrosis, an 80-mile paddleboard race from Bimini, a chain of islands in the Bahamas, to Lake Worth, Florida.
The event is a fundraiser for cystic fibrosis, and Johnson was part of a recreational relay team that included Travis Suit, the event’s founder. Suit’s daughter, Piper, was diagnosed with cystic fibrosis at the age of 4, and he launched the first Crossing For Cystic Fibrosis race in 2013.
Here’s how it works: Each team member takes turns paddling on the same 14-foot board, with a support boat carrying their teammates nearby. When a person finishes a shift, they return to the boat and the next person gets on to paddle.
The 2020 edition of the race was called off because of the COVID-19 pandemic. But in 2021 the race was back on. Johnson was now 49 years old, and nearly 20 years had passed since his double-lung transplant surgery in September 2001. In June, he and Leanne traveled to the Bahamas for the race.
Stand-up paddleboarding across the ocean wouldn’t be easy for anyone, but Johnson faces an added challenge: His transplanted lungs don’t fully inflate. That’s why he has gravitated toward endurance sports, he says: “I’m like a diesel engine. I’m not super fast, but once I get going, I can keep going all day long, if I need to.”
Johnson’s four-person relay team, called “Double or Nothing,” left the beach in Bimini at midnight on June 27. Their team name was a reference to his lifesaving, double-lung transplant.
Facing Dangerous Conditions
The relay team soon encountered very large waves.
“Seas were [cresting] 4 to 6 feet with an occasional bigger wave thrown in just for fun,” Johnson wrote on his Facebook page. “This definitely made it challenging to paddle and stay behind the boat. It also made transferring team members off and on to paddle extremely interesting/dangerous. With it being dark added a whole new element. It was like riding a bronco with a blindfold on. We also discovered that the east wind was blowing the engine fumes into the boat cabin where we were all sitting and there were a few logistical issues that popped up that we weren’t expecting. After 12 to 15 miles (not sure of the exact distance) most of us were seasick with minor carbon monoxide poisoning. At that time we decided to pull the plug.”
Because of the dangerous conditions that night, race officials pulled all recreational relay teams that had not already finished, Johnson says; only one recreational team had the chance to finish, according to the event’s results page. Three competitive relay teams, which started the race much earlier, before conditions worsened, were able to complete the race.
“Overall it was disappointing not to finish,” Johnson wrote. “However, it was not for a lack of training and trying our hardest. I couldn’t be more proud of my team and what we accomplished not only in the race but also in raising awareness and money for cystic fibrosis.”
Johnson’s team raised more than $7,700 and the 2021 event overall raised more than $650,000 for programs that directly support the cystic fibrosis community.
The Piper’s Angels Foundation, named for Suit’s daughter, is working on a documentary about Johnson and his team’s experience at the 2021 race. The name of the documentary? “Double or Nothing,” of course.
As for what’s next, Johnson wants to do the Crossing For Cystic Fibrosis again in 2022, but this time as an individual, not a member of a relay team. That means he’ll attempt to paddle all 80 miles by himself. Training starts now.
“I try to treat every day as a gift,” he says. “I was on my deathbed once before, and at the time, I had a lot of regrets. The next time I’m in that situation, I don’t want to have any regrets.”
Learn about transplant care for adults and children at UNC Medical Center.