Cystic fibrosis (CF) is a hereditary, chronic lung disease, requiring careful monitoring by a variety of medical specialists over a patient’s a lifetime. SLUCare physicians offer a team-based approach to CF treatment from the time of diagnosis – often in the first few weeks of life – through adolescence and into adulthood. Families see multiple specialists in a single visit for care that’s better coordinated and tailored to each patient’s unique needs.
Specialists with SLUCare Pulmonology, Critical Care and Sleep Medicine lead the care teams in two St. Louis Cystic Fibrosis Centers: the pediatric CF Center at SSM Health Cardinal Glennon Children’s Hospital and the adult CF Center at SSM Health Saint Louis University Hospital. Both are accredited by the Cystic Fibrosis Foundation.
Our CF Centers give patients access to the full resources of an academic medical practice – well beyond the scope of care you’d find with most community physicians.
Together, our pediatric team members develop individualized treatment plans to address the many issues CF patients face: respiratory, digestive and sinus problems, anxiety and depression, nutrition, diabetes, medications and possible interactions, insurance, transportation, home care and psycho-social concerns. By caring for the whole patient, we seek to minimize hospital visits, ease the stress on CF families, and offer patients the highest possible quality of life.
As part of our team evaluation, we continually look for opportunities to engage our patients in clinical trials. In recent years, clinical trials have given us new therapies for effectively treating CF, such as the development of CFTR modulators – a class of medications certain CF patients can take by mouth to fight troubling symptoms of the disease. These drugs have demonstrated great success in relieving cough for CF patients, improving lung function, reducing hospitalizations, even eliminating the need for lung transplant in some patients.
Our participation in the Cystic Fibrosis Therapeutics Development Network gives qualified patients early access to new medications and clinical trials.
In our pediatric CF Center, we see children from the time they are diagnosed – by a sweat test performed in infancy – through adolescence. Around age 16, we begin the process of transitioning care from our pediatric CF team to our adult CF team.
Pulmonologists from SLU Hospital attend pediatric CF visits at Cardinal Glennon. This gives young patients an opportunity to meet new doctors in a setting that’s comfortable and familiar to them. At the same time, it gives our adult pulmonologists the opportunity to meet our patients, learn their history, and develop a plan for continuing their care into adulthood.
Happily, patients with CF are living longer than at any other time in history. Our adult CF team keeps close watch over patients – in routine clinic visits and in the hospital – to optimize treatment for your individual needs.
Patient Talks About Positive Experience at The SLUCare Cystic Fibrosis Center
Patients are seen every three months at the center for evaluation and a spirometry test. Your doctor will assess your spirometry readings to watch for changes in lung function. Our goal is to identify illnesses as quickly as possible and intervene with medications as necessary to try and avoid hospitalization.
When an inpatient stay is needed, you’ll be seen in the hospital by a SLUCare CF specialist
– someone who understands your unique needs as a cystic fibrosis patient. It’s a personalized
approach you won’t find everywhere, but one we’re proud to offer as part of our CF
In clinic, adult patients meet regularly with our CF nurse coordinator, who assists with a variety of issues: new symptoms, medications, insurance, home health. Between visits, patients can reach the nurse coordinator through a specially designated hotline to address urgent matters.
Our social worker in the CF Center helps patients experiencing anxiety, depression, and other issues affecting overall well-being. Our dietitian meets with patients annually – or more often, if needed – to address nutritional needs and help with issues such as trouble absorbing nutrients, weight loss, or BMI that drops too low.
By bringing together all these experts within a single clinic, SLUCare provides well-rounded
care for CF patients, treating the whole person – not just a set of symptoms.
Plus, like our pediatric counterparts, our center is part of the Cystic Fibrosis Therapeutics Development Network, giving adult CF patients early access to new therapies through clinical trials.
SLUCare pulmonologists are part of a lung transplant collaborative through the CF Foundation. When lung transplant is recommended for our CF patients, our doctors will work to streamline referral to a lung transplant center and coordinate care between their center and ours. Our goal is always to act in the best interests of our patients and to offer them the best path forward in living with CF.
|Meet Our CF Specialists|