Local man with cystic fibrosis shattering expectations

One local man has shattered expectations several times.

ST. CHARLES COUNTY - Most people look at Mike Burke and see a healthy man.

He is an avid cyclist, regular swimmer, and has several marathon medals hanging in his home office.

“Everyone looks at me and they don’t see a sick man,” Burke said. “That’s ok by me, but my body is sick.

Burke grew up in St. Charles County, as the youngest of four boys in his family. When he was only six months old, he developed an unrelenting cough and struggled to gain weight. When he was 14 months old, doctors diagnosed him with cystic fibrosis.

At that time, the prognosis was bleak.

“Literally, they said I’d be lucky -- lucky to live past kindergarten,” Burke remembers.

Cystic fibrosis is a multi-system disease that affects the lungs and gastrointestinal tract. Patients lose lung capacity, struggle to breathe, and have difficulty digesting food.

Kindergarten came and went. Burke’s parent helped manage his disease with constant doctor visits, medications, and at-home therapy to loosen the mucus from his lungs. He also played sports, spent the night at friend’s houses, and led a pretty normal life.

 

“When I was seven the life expectancy was nine. When I was nine, it was 11 to 12.  When I was 12 it was still in the teens,” he explained.

As a teenager, he started to struggle with those statistics and held several big fears about whether he could survive and lead a productive and fulfilling life. Burke credits his father for pushing him to attend college and start a career.

Throughout his twenties, Burke stopped paying attention to the numbers. He got a degree and a great job and traveled the country. He did not prioritize his health, but continued to stay active.

Then one day, when asked to give a speech about his disease, he checked the numbers again.

“It was my 30th birthday and I read my life expectancy was 28. And it was the first time in my life that I was beyond it,” he said.

“Suddenly I was no longer looking down the barrel of a gun and it freed my mind to quit worrying about it.”

Living beyond the life expectancy inspired a change in Burke’s attitude about his disease. Even at 30 he was in fairly good health, and already active.

He decided to stop ignoring his health and really commit to living smarter with CF.

“I just didn’t care what the disease would do, I knew I had to do something different. I wanted to get beyond it and lead my life,” he said.

Burke moved back to St. Louis, started going to a doctor again, and committed to a medicine and therapy routine.

He takes more than 13,000 pills a year to help manage his disease. Every night, he has to wear a special vest for 30 minutes of therapy that helps shake the mucus from his lungs. And he has to stay active to keep his muscles strong and his lungs working hard.

Doctors suggested he start running.

“I took their advice and I started running and it got boring really fast. You know, three miles a day a couple days a week – it was tedious,” he remembers.

“It wasn’t only tedious but, every time I tried to run a little further, or a little faster, I would cough so uncontrollably that it would make me throw up, and it was super frustrating.”

Despite the challenges, Burke kept running. Even with a decreased lung capacity and a bad digestive system, he knew it was helping his health.

But he was getting bored, so he decided to try something big.

“My first marathon was in 2001-- Tulsa, Oklahoma. I finished it in exactly the amount of time that I planned,” he said.

 

“It gave me great confidence that I could keep going, and I did. I got totally hooked.”
Since that day, Burke has completed nine marathons and 20 half marathons. He became a coach for local runners in St. Louis. He started competing in triathlons, and even ran part of an Ironman triathlon.

Burke’s health took a dip a few years ago, which forced him to quit running for a while. But he continued to find ways to stay active, including a 100 mile hike on the Ozark Trail in Missouri. He plans to complete another long hike later this summer.

Dr. Ravi Nayak calls Burke a “poster boy patient.”

The SLUCare physician is a pulmonologist, and Director of the Adult Cystic Fibrosis Program at St. Louis University Hospital in St. Louis. He is Burke’s doctor, and shares his story with other patients often.

“When CF patients come to know that Michael is able to run marathons despite cystic fibrosis, that’s the best tool for motivation,” he said.

 

Dr. Nayak said the life expectancy for CF patients is much higher today that when Burke was a child. The median survival age is about 37-40 years. Nayak said CF used to only affect children, but has now become an “adult” disease. Some of his patients lived into their seventies.

“This is the exciting time for our cystic fibrosis patients and caregivers,” he said. “There is so much advance in the recent past and we have so many medications with act on the defective gene itself.”

He credits Burke’s health to his longtime active lifestyle and commitment to medications and therapy.

While Burke was running marathons, he found others inspired by his story.

“I’m in a unique position. I’m kind of an old man in our community. There’s just a handful of people older than me,” he said.

He decided to use his story to help other battling the same disease, or any other challenge in life. A few years ago, Burke wrote a book.

Waiting to Die, Running to Live” was inspired by his own journey living with Cystic Fibrosis and deciding to take charge of his life.

“I was tired of seeing our babies [with CF] dying, our teenagers and adults dying because they weren’t taking care of themselves and because they didn’t have a sense of purpose, because they didn’t know they could have a life with this disease,” he explained.

Burke also started meeting with groups and individuals as a motivational speaker.

In April, he shared his story with a group of women through Connections to Success. The organization empowers people living in poverty to achieve economic independence. He spoke about overcoming fear, finding a support system, and embracing challenges.

“Embrace that challenge. Whatever it is in your life -- just go after it,” he told the group.

“You cannot avoid it. It’s just going to mutate. It will fester and get you. So go at it, live with a purpose, and gather a community."

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