Austin Reed wakes up every morning early enough to go through an hour-long routine that keeps him alive. The 27-year-old broadcaster straps on a vest that vigorously shakes his lungs to break up the thick mucus making it hard to breathe. Then he coughs and coughs and coughs until the mucus come out. He also inhales several medications and takes a couple handfuls of pills – at least seven every time he eats to help digest his food. He repeats the routine at night.
Austin has cystic fibrosis. “It’s a battle every day … It’s like a second job,” he says of his health routine.
Cystic fibrosis is a rare genetic disorder that makes all the secretions in his body thick, gumming up the works in his lungs, his pancreas and his liver. When Reed was born most cystic fibrosis patient died before reaching college. Now the life expectancy is closer to 40. More than half the cystic fibrosis patients in the U.S. today are adults.
And with adulthood, cystic fibrosis patients in the Valley used to face the challenge of finding an expert to care for their complex medical needs. Once they aged out of the care of pediatric experts at the local children’s hospital, patients had to drive to the Bay Area or Los Angeles or further to find medical care. Now that care is close to home.
Community Regional Medical Center has begun the only accredited adult and pediatric cystic fibrosis program between San Francisco and Los Angeles. UCSF Fresno recruited internal medicine specialist Dr. David Lee from Brown University to head the new program, which does newborn screening for the disease and treats patients from birth throughout their life.
The UCSF Fresno Cystic Fibrosis Program takes a team approach to care with respiratory therapists, nutritionists, pulmonologists, gastroenterologists and social workers seeing each patient during checkups. As an accredited program, patients will have access to local and national research on the disease. Dr. Lee says the number of cystic fibrosis patients in the Valley mirror the number of cystic fibrosis patients in San Francisco.
Having an adult cystic fibrosis program in Fresno was huge for Reed, who recently moved here from the East Coast. When Reed and his wife decided to have children they began looking for jobs closer to her parents in Madera County. He was thrilled to get a job locally with MeTV but hesitated wondering about the availability of medical experts.
“I’ve been in small broadcast markets and if I got sick or got pneumonia, I’d have to drive three or four hours to the nearest CF clinic,” he said. “I wasn’t sure there would be any doctor in the Central Valley that knew anything about cystic fibrosis. I found out Dr. Lee treats CF patients here and not just kids – and there’s an accredited adult program. We could conceivably be here forever now.”
Reed has found not only care in close proximity but an expert that he’s close to. “Dr. Lee has been a force of encouragement for me. I can call him any time or text him. We meet for coffee,” he said, adding that Dr. Lee even has texted him the same evening with results of a lung scan just so he wouldn’t worry. “Never had this kind of care in my life.”
Dr. Lee says being involved and close to his patients is necessary to make sure they stay healthy with such a complex disease. It was this very intense involvement that drew him to specialize in cystic fibrosis when he was finishing his internal medicine residency. His first patient with the disease was a 25-year-old woman on hospice with a 5-year-old son. “She taught me so much about her disease and herself. I helped her learn to face death so she could live. Every day I went to her and encouraged her to get out of her hospital bed and go through her treatments so she could spend one more day with her son. She ended up living a year and a half instead of three months. It profoundly changed me.”
Since then Dr. Lee has brought that same intense focus and involvement to Fresno.
“Having a doctor who knows about cystic fibrosis and having this relationship with him gives me hope that I can live longer,” says Reed. He and his wife are expecting twins soon so he and Dr. Lee are collaborating to beat that usual life expectancy.
There is always hope, Dr. Lee says. “My oldest patient in New England was 67 years old so there is certainly hope for living to old age. Here in the Valley I have a patient who is a biologist, patients who are parents, a broadcaster, and several college students. My work is helping them find the balance between the daunting, daily responsibility of caring for their health and living fully.”
Erin Kennedy reported this story. Reach her at MedWatchToday@communitymedical.org.