At the Forefront of Cystic Fibrosis Treatment
Dr. Blakeslee Noyes with patient Kyle Stewart
By most accounts, Kyle Stewart is just a typical teen. Approaching his 17th birthday, he plays soccer on his high school varsity and select teams and regularly works out at the gym. But each day in between school and sports, homework and hanging with friends, he spends an hour or more treating his cystic fibrosis, a genetic disorder that often affects multiple organ systems, especially the glands producing mucus.
He's always worked to keep me healthy and make good decisions about my care.”
Stewart was diagnosed when he was just 18 months old, after a series of colds and asthma symptoms, followed by pneumonia and trouble gaining weight. He immediately began treatment with Dr. Blakeslee Noyes of SLUCare Physician Group, who is a professor of pediatrics at Saint Louis University and vice chairman of SLUCare's pediatrics department. "I've had fantastic care with Dr. Noyes, and he's always worked to keep me healthy and make good decisions about my care," Stewart says.
The life expectancy for CF patients has increased dramatically over the last few decades, and now averages 41 years, says Noyes. It is now standard practice to test newborns for the disease, and SLUCare's pediatric pulmonology team is at the forefront of new treatment approaches. "As with many cystic fibrosis centers, we're actively involved in multi-center studies, looking at new therapeutic agents and potential breakthroughs, so we actively recruit patients to participate in clinical trials," he explains.
Today, Stewart is on a series of treatments directed at pulmonary and gastrointestinal issues, Noyes explains. He spends 30 minutes or more twice a day on an airway clearance device, and he also takes several daily vitamins and medications, including a digestive enzyme ingested before eating. "We basically ask our patients to carve out two hours or more each day just dedicated to their health," Noyes says.
Because Kyle is closely followed by Dr. Noyes and the SLUCare pediatrics team, if there's even the slightest health change, they're looking for answers."
Cystic fibrosis patients, who are expected to come in a minimum of once every three months, receive a high level of coordinated care from the SLUCare team, which eases the burden on families affected by the lifelong disease. "Besides Dr. Noyes, Kyle sees an ear, nose and throat doctor, a dietician, a social worker and a gastroenterologist, so we can treat all his symptoms with one stop to the hospital, instead of trying to maneuver it all separately on our own," says Stewart's mother, Becky. "Because Kyle is closely followed by Dr. Noyes and the SLUCare pediatrics team, if there's even the slightest health change, they're looking for answers."
Coordinated care also means a seamless transfer for patients as they age out of the pediatric practice and begin working with SLUCare's adult care team. Once the patient reaches 17, SLUCare's adult cystic fibrosis doctors are available at the children's clinic. "This way, when the patients do transfer to the adult care center, its doctors are already familiar with them, and the patient is already familiar with the doctors," Becky Stewart says.
By: Stephanie Zeilenga