Gaining Independence: living with cystic fibrosis
Teenager with cystic fibrosis grows into a man under the care of Medical College physicians
Left to right: Mary Ellen Freeman, Clinical Nurse Specialist; Dr. Biller, and Mike Hoch.
Fifty years ago, a child with cystic fibrosis wasn’t expected to live beyond his 7th birthday. Mike “Bud” Hoch is 27—a college graduate, employed at Roundy's, about to be married—and he has cystic fibrosis.
Hoch was three months old when he was diagnosed with the inherited disease, which causes thick, sticky mucous to build up in the lungs and digestive tract. His diagnosis wasn’t a complete surprise; his sister had cystic fibrosis as well. Hoch and his sister spent years shuttling in and out of hospitals before his sister died at age 15. Hoch was sure he was next. He was only nine years old.
As a child, Hoch received care in Madison. But when he started college at the University of Wisconsin-Milwaukee, he transferred his care to Medical College of Wisconsin physicians at Children's Hospital of Wisconsin. By his own admission, Hoch was in pretty bad shape when he first met Julie Biller, MD, Professor of Pulmonary Medicine. “I was probably the sickest I’ve ever been,” Hoch recalled. “But Dr. Biller was reassuring and told me, ‘We’re going to take care of you.’”
|"Dr. Biller was reassuring and told me, ‘We’re going to take care of you.’ A lot of people do their jobs, but Dr. Biller connects with her patients."
Cystic fibrosis interferes with patients’ breathing and digestion. Young patients of Medical College pulmonary specialists have better-than-expected lung capacity; the Medical College’s statistics rank among the top 10 cystic fibrosis centers in the nation. Patients of Medical College physicians also have better-than-average body mass indexes, an indication that they are thriving despite their digestive challenges. For a patient with cystic fibrosis, appropriate treatment makes all the difference between a normal life and a life marked by frequent illness.
Hoch has forged a special relationship with Dr. Biller, who sees patients at Froedtert Hospital and at Children's Hospital of Wisconsin. “It’s almost more of a personal relationship now than a professional one,” Hoch said. “A lot of people do their jobs, but Dr. Biller connects with her patients.”
Medical College physician expertise
- The cystic fibrosis team at Children’s Hospital has created a model of care to address the fact the individuals with cystic fibrosis are living longer. After high school, teens with cystic fibrosis are gradually transitioned from pediatric care at Children’s Hospital to adult care at Froedtert Hospital. The highly collaborative arrangements between the pediatric specialists and the adult specialists has helped ensure a successful transition for patients and their families.
- Physicians have received regional and national recognition for the Pulmonary (lung) Medical program, with special emphasis on treatment of cystic fibrosis. Pediatric Pulmonary program ranked #7 in the nation by Parents magazine.
- One the first centers in Wisconsin to offer newborn screening for cystic fibrosis; physicians led the push for statewide screening. Cystic fibrosis is easiest to manage if caught early, before complications set in.