Double lung transplant survivor Scott Johnson preparing for 80-mile paddle board crossing

At 29 years old, Scott Johnson contemplated suicide.

Johnson was diagnosed with cystic fibrosis — a genetic condition that damages the lungs and other organs — at three months old. His health deteriorated throughout his 20s and, in 2001, he contracted bacterial pneumonia and needed a double lung transplant to live.

“My thought process was, cystic fibrosis had ruled my life, my entire life,” he said. “And I wasn’t going to let it be the one to decide when I pass away. I wanted to have at least some control over something like that.”

Looking for inspiration, one night, Johnson wrote a list of the things he’d always wanted to do — among them was completing a triathlon.

After spending over two months in the hospital waiting for a transplant, he received one on Sept. 15, 2001.

Following the operation, he had to relearn how to walk. But in the more than 20 years since, he’s accomplished even more than what was on that list.

Perhaps his biggest adventure begins this week, as Johnson will attempt an 80-mile paddleboard event: the Crossing for Cystic Fibrosis from the Bahamas to Florida for Piper’s Angels, a foundation for people with cystic fibrosis and their families. The crossing is set to begin at midnight on June 26.

'My type of crazy'

In 2019, Scott and his wife, Leanne, attended an SUP event in Wilmington.

Leanne walked around to tents, came back to Scott and pointed to one set up by Piper’s Angels. The foundation was founded by Travis Suit in 2017 and named after his daughter, Piper, who was born with cystic fibrosis.

“She said, ‘You’re not going to get this, these people are crazy,’” Scott said. “‘They paddle from the Bahamas to Florida and it's 80 miles.’ And I was like, ‘Wow, that’s my type of crazy right there.’”

He walked over and met Suit, lifted up his shirt, and showed him the scars from his transplant.

“Scott was the epitome of everything that we represented and that we were fighting for,” Suit said. “I just started weeping.”

Growing up, Johnson didn't make plans for the future. People with Cystic Fibrosis didn’t live long enough — when he was first diagnosed in the early 1970s, doctors told his parents to take him home and love him, because he wouldn’t live for long.

Since then, life expectancy has increased for Cystic Fibrosis patients. Yet the average is still only 44 years, leaving few role models in the community.

“People don’t usually live long enough to achieve things that are noteworthy in the cystic fibrosis world,” Johnson said. “So for (Suit) to be able to meet somebody and hear my story gave him hope that his daughter could actually have a normal life.”

The pair quickly grew close and, last year, Johnson attempted the crossing with a team. Five miles in, weather conditions quickly took a turn for the worse — 7-8 foot waves and dangerous wind left whole team was seasick. Around 20 miles, they turned around.

After that experience, he couldn’t talk anyone into doing the crossing with him again. So he decided to attempt the crossing solo.

'The way I'm wired'

Leanne has never seen Scott so diligent about his training.

“Now that we had the opportunity to go last year and just be surrounded by the whole (cystic fibrosis) community for a whole week, I think Scott knows now what it means,” she said. “When you’re surrounded by a whole community of people who have a connection to it, that really inspires you.”

The crossing takes most participants between 12 and 15 hours, and Suit said it’s one of the toughest endurance events in the world because of the sleep deprivation, dehydration and much of the event taking place at night.

“It’s just the way I’m wired,” Johnson said. “I think I just like challenging myself just to see what I’m capable of.”

To Suit, the primary trait that’s enabled Johnson to continue pushing the boundaries of his capabilities is simple: Courage.

“There’s times where people are fighting and fighting and they get to a point where they want to give up,” Suit said. “He had the courage to look at his situation differently, and to really lean into that.”

Johnson said he didn’t set out to be a role model when he began training for endurance sports — he was doing it for himself, after spending his early life unable to. But he's come to realize the impact his story can have on others.

“There’s a lot of stuff that’s happened in my life that I’d rather forget,” he said. “But I feel that if my story can help somebody get around that, or get through something similar, then it’s worth it to me.”

This article originally appeared on Wilmington StarNews: Wilmington's Scott Johnson ready for 80-mile SUP for cystic fibrosis