WHERE ARE THEY NOW?
Where Are They Now? Michael Burke / THEN: 1-year-old cystic fibrosis patient with progressive lung disease
now 51-year-old Ironman athlete
THEN
W
hen Michael Burke was a 1-year-old patient at SSM Health Cardinal Glennon Children’s Hospital, his parents were told he would be fortunate to live until he was 7 due to progressive lung disease caused by cystic fibrosis. Now 51, Burke plans to bicycle 5,000 miles this year, a thousand more than last year. “Cardinal Glennon set me up for every wonderful thing that I have been able to do and live decades beyond my life expectancy,” he said. “I’ve been able to run nine marathons, 20 half-marathons, a 70.3 Ironman, travel the country and be married. The hospital made that possible.” Burke was an SSM Health Cardinal Glennon patient from 1971 until he transitioned to the adult cystic fibrosis (CF) program at Saint Louis University Hospital at the age of 22. His physician was the late Tony Rejent, MD, a pioneer in CF care, founder of the Cystic Fibrosis Center at SSM Health Cardinal Glennon and its director for 40 years. Also legendary among generations of patients was Mary Ellen Judge, the pediatric nurse practitioner who retired in 2008 after 48 years at the hospital and 32 in the CF Center. She and Burke have stayed in touch.
NOW
Following Burke’s life has been “thrilling,” she said. “I saw quantum leaps and there have been more than quantum leaps since I left.” “You would think a hospital would be a place you would want to get away from, but it wasn’t like that,” Burke said. “I played in the hallways. The nurses were amazing. It was pleasant.” CF is a genetic disease that causes mucus in some body organs to thicken, causing persistent lung infections and liver disease. Mucus impairs the pancreas’ release of enzymes that help the body absorb nutrients, resulting in malnutrition. About 1,700 genetic defects have been linked to CF. About 30,000 Americans are living with the disease and 1,000 more are diagnosed annually, according to the CF Foundation. When the CF Foundation was formed in 1955, there were no treatments for CF and its patients rarely lived long enough to start school. Today more than half of CF patients are adults. Gradual advancements in care carried Burke to the age of 31, when he decided to aggressively push the disease’s limits. “I started running. My brain likes to go big. I wanted to do the hardest thing I could think of, and that was
to run a full marathon. I wanted to check CF where it hurts, mentally and physically,” he said. As he “stacked on miles,” he felt stronger and coughed less and less as the exercise assisted other treatments in clearing his lungs. “Running got me mentally focused on something positive and physically challenged me to take my medicine better, do the treatments better and go to the doctor more often,” he said. Burke pushed through a running career that included marathons (26.2 miles), half-marathons (13.1 miles) and a 70.3-mile Ironman triathlon – a one-day race consisting of a 1.2-mile swim, 56-mile bicycle race and 13.1mile run. Life-changing treatment advances continued to arrive, especially CF modulators that correct a malfunctioning protein caused by genetic defects. “My lung capacity in 2001 was 80 percent,” he said. “In 2019 it dipped to 68 percent. In 2020 my lungs returned to 80 percent.” He credits the recovery to the CF modulators and the early care he received. Burke, now a motivational speaker and executive coach, credits his early care at SSM Health Cardinal Glennon for preserving much of his lung function until the modulators came along. Also, he said, “My mom and dad did my postural drainage therapy every night for years. They never missed a doctor’s appointment or all the pills.” Before his father died, Burke asked him to describe his experiences at the hospital. “My dad said there was one word to describe Mary Ellen – ‘love.’ For an old-school guy to say that, I think it speaks volumes. They knew we could count on her.” glennon.org Spring/Summer 2021 • 71
