Scott Johnson was diagnosed with Cystic Fibrosis at the age of three months old. By the time he was 29, he was told that he needed to get a double lung transplant or he would die. His lungs had been completely ravaged by the disease and couldn’t support his bodily functions any more. After a bout with bacterial pneumonia, his health deteriorated rapidly. For two months he waited in a hospital bed, falling in and out of comas, learning that organs were possibly coming available – only to watch those possibilities fall through again. He was starting to feel like he was pretty much done, and he just didn’t feel like fighting anymore.

On September 11, 2001, he was told that a strong pair of lungs did become available and could be his – but because of what happened on that fateful day, and the resulting ban on flying, Scott was not going to receive those lungs in time. His doctors thought that news was the final blow, a death sentence for him. Miraculously, though, Scott held on until September 15th, when they finally did arrive.

Lying in a hospital bed for months, in a pretty dark place emotionally, Scott reflected on all the things he wished he could have done with his life and created a list. He resolved that if he got a second chance at life, he would do every one of the things on that list. At the top: to complete a triathlon.

But after the surgery, Scott had to start at the beginning. He was so weak that he couldn’t even eat or talk, and he weighed only 94 pounds. And because his muscles had atrophied, he had to begin the long process of learning to walk again.

That took a while. But after he succeeded in basic walking, he started to swim. Then he biked. Then, eventually, he ran.

In 2003, Scott finished his first triathlon, and he was hooked. Before the transplant, it felt to Scott like he was breathing through a straw. Afterwards, he could breathe freely. He could feel his body’s strength. So he set his sights higher and completed two full seasons of triathlons before deciding he was going to attempt an Ironman race – 2.4 miles of swimming followed by 112 miles of biking followed by 26.2 miles of running. The granddaddy of endurance sports.

Scott was inspired and fully believed: This was why he had survived, this was the point – to inspire others with cystic fibrosis to see what was possible, to raise overall awareness for the importance of organ transplantation, to make a difference in this world by doing something he already loved.

He lined up to race Ironman New Zealand once and Ironman Florida two times. He was unable to finish the first two races – but, finally, on his third Ironman race, Scott Johnson finished Ironman Florida and became the first-ever double lung transplant recipient in the world to finish any race of that distance. (And he’s got the tattoo to prove it.)

Words of wisdom to those with Cystic Fibrosis, for those waiting for organ transplants or battling serious health issues? Scott says, simply, “Hold on. You don’t know what might be around the corner…Just don’t give up.”

Up next was an invitation to the Ironman World Championships in Kona. You can see a great video about Scott’s experience training for it here. I love how it starts, “Every breath to me is truly a gift.”