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Thursday, March 09, 2017, 7:20 AM 4:34 PM

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Keeping the Beat

Tony Madonna doesn't let CF throw him off beat.Tony Madonna was born with cystic fibrosis (CF), a genetic disease that causes mucus to build up in the body’s organs. This buildup can make it hard to breathe and absorb nutrients. Madonna was just six weeks old when he was diagnosed. His family lived in Kona, Hawaii, and had little access to specialized CF care. To give him the best chance of receiving the care he needed, Madonna’s family relocated to Denver, Colorado.

Growing up, Madonna’s biggest battle was malnutrition due to CF. “I was always smaller than everybody because my main issue was digestion. My lung function was really good, though,” he said.

Feeling healthy, Madonna moved back to Hawaii for college, but he quickly ran into trouble. “During my first semester I got really sick,” Madonna explained. He returned home during Christmas break and visited the Adult Cystic Fibrosis Program at National Jewish Health. “I was 18, so I thought I was invincible, but I had contracted two extremely strong infections,” he said. His lung function had also decreased by nearly half. So, instead of returning to Hawaii for school, Madonna was hospitalized at Saint Joseph Hospital.

“At National Jewish Health and Saint Joseph Hospital, patients have access to dedicated and specialized CF providers and health care,” said Mimi Saavedra, MD, a cystic fibrosis specialist at National Jewish Health and Saint Joseph Hospital. Dr. Saavedra has been Madonna’s doctor for the last seven years.

“Those with classic cystic fibrosis, like Tony, often have to deal with GI complications, sinus issues and respiratory infections,” said Dr. Saavedra. “Treatment takes several hours a day of work to take all their medications and do their respiratory treatments. Then they often tube feed all night. It’s a lot for a young person.” In addition to daily treatments, most patients with CF spend long periods in the hospital, treating severe lung infections and flare-ups of the disease.

It was during these hospital stays and treatment sessions that Madonna began to teach himself the drums. “I started practicing by myself and I was able to pick it up pretty easily,” he said. Madonna even joined a band, playing gigs on the weekend. “I make the weekend a priority and let my body regroup during the week.” Those weeks sometimes include hospital visits.

“Tony does a good job of managing his health and having fun. I haven’t gotten to hear him play, but other people in our clinic have,” said Dr. Saavedra. “Although I have seen him play when he brings his drum pads to the hospital during his stays.”

That commitment to quality, compassionate care is shared by Saint Joseph Hospital, she said. “I had very good care there. They always answered any questions I had,” said Madonna.

While CF may throw Madonna off beat occasionally, he doesn’t plan to slow down the tempo of life. “I can do pretty much everything. No one would necessarily know that I have CF unless I told them,” said Madonna. “When you’ve been doing this long enough, it all becomes routine.”