ST. LOUIS, Mo. -- Mike Burke, 43, has cystic fibrosis and has lived as if he didn't have long to live.

The disease cripples the lungs and digestive system. The body uses salt and water poorly; thick mucus accumulates inside the lungs and digestive tract; the pancreas malfunctions, harming digestion.

He was diagnosed at 14 months old. His parents were told he might make it to his teen years. After he started some medicines, though, he said he had a normal childhood, playing sports and chasing about with siblings.

At age 16 he did his own reading about life expectancy. He learned that maybe he'd live to graduate from high school.

But the numbers kept shifting, he said. "When I was 16, I read the life expectancy was 18; at 20 it was 22," he said. "There were no adults around to talk with me about it. My parents were great, but no one who shared what I was dealing with."

His parents wouldn't let him fall into a fatalistic state of mind, he said. "Otherwise, I would have made some bad decisions.

"I told my father I wasn't going to college because I wouldn't be alive, and he said, '(Expletive), you're going to college.'"

From college, he spent his life cramming as much as he could into a short future. "I wanted a job that would take me a lot of new places," he said. And he needed medical insurance because his therapy was expensive.

He worked for several years in sales for a major hotel chain that moved him around a lot.

Then an epiphany. Burke turned 30. He read that life expectancy was 28. Small but significant advances were tacking on precious time for people with cystic fibrosis, maybe one advance every five or so years.

"It hit me, oh my God, I've wasted years thinking negatively," he said. "I was running away."

He pondered: It might be time to plan to live rather than plan to die. "I decided I wouldn't let this control my life any longer."

He took up running on the advice of a friend in Colorado. He had exercised all his life with sports, bicycling and other movement. Exercise eased the symptoms. Still, he found running boring.

"I'm a challenge-oriented guy," he said. "I had to make this a challenge." He found marathons. "I'd run 6 miles; I could run 26."

By 2001, he was in his first marathon. In an event in Tulsa, Okla., he finished within four seconds of his goal time.

Since then, he has finished nine marathons, nearly 20 half marathons, three triathlons and nearly finished the half Iron Man competition, had it not been for the flareup of a serious medical condition. He's now preparing for the GO! St. Louis Marathon Relay set for early April.

He runs with 80 percent lung function. And, "I take 13,000 pills a year in order to digest what I eat," he said. Daily, he straps on a therapeutic vest that vibrates thick mucus from his lungs. It replaces having someone pat his back to loosen mucus.

Without the endurance sports, he said, life would be worse.

Cystic fibrosis is a genetic disease, said Dr. Ravi Nayak, director of the Adult Cystic Fibrosis Program at St. Louis University Hospital.

Someone with the disease struggles with breathing as well as maintaining a healthful weight.

About 30,000 people in the United States have the disease; about 10 million carry the traits. To be born with the disease, someone needs defective genes carried by both parents. Cases can run from mild to very severe. "I have patients who self-diagnosed when they were in their 40s," Nayak said.

The disease was almost always fatal until the '80s and '90s when medicines were developed that eased the symptoms, Nayak said.

A major breakthrough was in 2005 when inhaled antibiotics suppressed lung infections. In 2011, a new drug helped manage mucus in the lungs. Routine screening of newborns and other diagnostic tests have helped stretch life expectancy.

Now, people living into their 30s and 40s is becoming common. "Forty-five percent of patients are (older than) 18 years old," he said. "My oldest patient is 66 years old. The median age is 37 years old." He credits the Cystic Fibrosis Foundation for funding and spurring research.

Burke, Nayak said, is one of the people living with cystic fibrosis who benefits from intense exercise - only a small percentage do. Its benefits include strengthening the body to withstand the effects by clearing airways and bolstering appetite.

One of the issues of running with cystic fibrosis is that he struggles to maintain weight, Burke said. Maintaining a healthful weight improves lung function while losing too much weight is harmful, he said.

"Dr. Nayak told me eat whatever I want; it's not going to make me gain too much weight," Burke said. He estimated that while preparing for a race, he eats 4,000 to 5,000 calories a day. "Even then, I get 64 percent of the nutrition," he said.

Nayak added that another benefit of the exercise is body image. "They need to feel good about their bodies," he said. "I encourage him to do marathons. Anything his body can tolerate, I encourage."

Burke says he finds his life relatively normal. He runs a business from his home, and he's married to someone who said she'd fight along with him as long as he was fighting, too.

Triathlons have taken over his life, now, he said. He competed in three last summer.

Nayak said that despite the advances, there's no cure.

Still, "Who knew 10 years ago that CF patients would be where they are now?" he said. "Our goal is to make CF a geriatric disease."

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MIKE BURKE

Age: 43.

Occupation: Owner-operator of Virtual Assistant, a company that performs clerical work for small businesses.

What he did: He has run nine marathons, three triathlons, several half-marathons, all the while battling cystic fibrosis.

CYSTIC FIBROSIS FOUNDATION

National Chapter www.cff.org/

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