UNC Hospitals patient thought to be first lung transplant recipient to compete in an Ironman Triathlon

CHAPEL HILL, N.C. – In July 2001, Scott Johnson checked into UNC Hospitals under dire circumstances.

Jan. 10, 2005

UNC Hospitals patient thought to be first lung transplant recipient to compete in an Ironman Triathlon
CHAPEL HILL, N.C. – In July 2001, Scott Johnson checked into UNC Hospitals under dire circumstances.

His lungs had been ravaged by cystic fibrosis, an inherited disorder that fills the lungs with thick mucus, making it extremely difficult to breathe. He weighed just 95 pounds. And at age 29, his only chance of staying alive lay in receiving a double lung transplant.

While waiting for a pair of donor lungs to become available, the resident of Wilmington, N.C., wrote a list of things he wanted to do if he survived. At the top of his list was racing in a triathlon, an athletic competition in which participants swim first, then race on bicycles before finishing the event with a running race.

After Johnson waited at UNC Hospitals for two months, a pair of lungs finally became available. Then Dr. Frank Detterbeck performed Johnson’s transplant surgery in September 2001.

“He had a lot of internal scarring from many episodes of pneumonia, which made it very difficult to remove his old lungs,” Dr. Detterbeck remembers. “He got a really nice set of new lungs, and recovered in record time, leaving the hospital 12 days later.”

Another UNC physician who has worked closely with Johnson throughout his treatment is Dr. Robert Aris.

“At the time he experienced respiratory failure, Scott was young, full of life, and had a young family to take care of,” Aris said. “His lungs were damaged by a genetic mutation, resulting in cystic fibrosis, for which there is no cure and which usually results in death at a young age (near 30) without transplantation.”

“Scott was the ‘perfect’ patient,” Aris continued. “He followed the recommendations of his physicians dutifully and always took a positive view of life, despite the problems that he faced. It surprises none of us that he continues to thrive and excel and reduce obstacles for persons with chronic health problems or disabilities.”

Many others at UNC Hospitals have been involved in Johnson’s care, including Drs. James Yankaskas and Michael Knowles. Johnson also credits registered nurse Steven Harris, physical therapist Calvin Wang, respiratory therapist Darrell Owen, social worker Laurie McDonald and transplant coordinator Brandi Mueller (no longer at UNC) with playing significant roles.

Since then, Johnson has more than made good on his to-do list. Now 32 years old and weighing 142 pounds, he has completed not just one, but 13 triathlons. He is thought to be the first double-lung transplant recipient in the world to complete a half Ironman. Now he is gearing up to race in March in one of the most grueling athletic events in the world: Ironman New Zealand.

“When I first started running triathlons I did them strictly for myself,” Johnson said, “  because I had always wanted to be able to participate in this sport but physically couldn’t. Since then it’s grown more into trying to inspire each and every child and adult who suffers from this disease. To show them that it’s all right to dream big and then go for it. I run these races for them now, not for myself.”

“A friend of mine, Bill Curry, once told me that everyone should do something in their life that they once thought was impossible and only then will they realize that everything is possible. That is why I’m doing this,” Johnson said. “To show the CF community that anything is possible.”

An Ironman begins with a 2.4-mile swim, then proceeds to a 112-mile bike ride and finishes with a 26.2-mile run. According Dr. Bob Laird, chief physician for the Ironman Triathlon World Championship race in Hawaii, Johnson is thought to be the first lung transplant recipient who has ever attempted to do an Ironman.

He was invited to compete in the event by Tracey Richardson, a New Zealand woman who is an Ironman triathlete herself and has two children with cystic fibrosis. Johnson contacted her by e-mail after finding a Web site she helped set up, www.breath4cf.co.nz, that raises money to help people in New Zealand with cystic fibrosis participate in physical exercise and sports.

“Keep fighting for your children,” Johnson wrote to Richardson. “The cure is right around the corner. The advances just in my lifetime have been incredible … Please let me know if I can help with anything.”

The two exchanged many e-mails over the next several days.

“There was something about the e-mails, about his spirit and about his tenacity that made me want to know him more,” Richardson said. “His story is incredible and as I discovered more I found myself becoming inspired by him and felt I wanted others to feel that also.”

Since Johnson told Richardson he was planning to do an Ironman, she suggested that he should come to her country for Ironman New Zealand. All the money raised from athletes in that race goes into the BREATH4CF fund to benefit cystic fibrosis patients in New Zealand.

“I mulled it over for a few weeks and went back and forth many times,” Johnson said. “I realized that the next time I was in the hospital reflecting on my life this would be one thing that I would regret not doing. So I agreed to do it.”

After he agreed to come, race organizers surprised him by waiving his entry free and making arrangements for him to travel to New Zealand at no cost to himself. Johnson is returning the favor by seeking financial sponsors for his endeavor, with the contributions going to support the U.S.-based Cystic Fibrosis Foundation. His fund-raising Web site is at www.ironmancf.com.

Richardson said that as far she’s concerned, Johnson’s trip to New Zealand will be a success whether he finishes the race or not.

“Will he make it to the finish line?” she asked. “We are not sure but what we ARE sure of is that an entire athletic community and CF community will be inspired and motivated as he attempts what no one else has. Every person with CF in New Zealand will be by his side willing him on, every stroke, pedal, step and breath of the way.”

Note to media: Johnson will be visiting UNC Hospitals for a medical checkup on Jan. 28. There will be photo, video and interview opportunities before, during and after that visit. To set up a photo/video/interview session, contact Stephanie Crayton at (919) 966-2860 or scrayton@unch.unc.edu.

A photo of Johnson is available at www.unchealthcare.org/images/sjohnson.jpg

A photo of Dr. Aris is available at www.unchealthcare.org/images/aris_robert.jpg

A photo of Dr. Detterbeck is available at www.unchealthcare.org/images/detterbeck_frank.jpg

Media contact: Stephanie Crayton, (919) 966-2860, scrayton@unch.unc.edu

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