Smooth Transitions from Pediatric to Adult Cystic Fibrosis Care

Adult Care for Cystic Fibrosis

As our patients age, we transition their care to the adult program in a carefully designed manner. In fact, about 30 percent of our adult population is over 35 years old. This gives us hands-on expertise in the specialized care of cystic fibrosis in adults, which is important because the condition often becomes more complicated with age.

UH Rainbow Babies & Children’s is committed to following patients with cystic fibrosis closely and providing expert care for both urgent issues and long-term disease management. If an adult patient’s condition requires hospitalization, we admit them to University Hospitals Cleveland Medical Center. Patients are placed in private rooms where the infection control precautions recommended by the Cystic Fibrosis Foundation are strictly followed.

Our nursing staff, respiratory therapists and dietitians are specially trained in the unique needs of both adult and pediatric cystic fibrosis patients and can offer any services needed, including pulmonary rehabilitation.

The benefits of pulmonary rehabilitation include:

• Relief from breathlessness, labored breathing or fatigue
• Reduced anxiety associated with cystic fibrosis and breathing difficulties
• Improved respiratory hygiene to reduce the risk of infection
• Better quality of life

If a patient’s lung function becomes significantly diminished, dropping below 40 percent, our team can also help patients and their families explore the possibility of a lung transplant.

Inpatient Services We Offer

UH Cleveland Medical Center, which includes UH Rainbow Babies & Children’s Hospital, houses state-of-the-art facilities that provide the necessary support for the care of adults with cystic fibrosis. Services include:

• Full laboratory services, including microbiology, biochemistry, hematology and immunology
• Radiology services, including bronchial artery embolization and difficult PICC line placement
• Pulmonary function testing
• A specialized nasal laboratory for measurements of nasal potential difference and nasal epithelial cell acquisition, exhaled nitric oxide measurements and multiple breath washout
• Endoscopy facilities offering both bronchoscopy and GI endoscopy
• Art and music therapy
• Exercise equipment
• OT/PT
• Specialty pharmacy services

Outpatient Services We Offer

We offer our adult cystic fibrosis patients a comprehensive range of outpatient services, including:

• Laboratory services
• Radiology
• Pulmonary function tests (PFTs)
• Genetic evaluation
• Nutrition evaluation
• Sweat testing
• Counseling and support groups
• Research
• Specialty pharmacy services
• Pulmonary rehabilitation services
• Transplant services

Our Multidisciplinary Approach

We take pride in our comprehensive, multidisciplinary approach, having embedded a wide range of specialists into our cystic fibrosis care team to offer a vast depth of expertise to our patients – all under one roof. Our multidisciplinary team includes experts in:

• Nursing
• Social work
• Nutrition
• Respiratory therapy
• Genetics
• Research
• Adult gastroenterology
• Adult pulmonology
• Physical therapy
• Specialty pharmacy
• Facility dogs

In addition to our primary CF team, we have access to a consulting staff of more than 40 adult and pediatric specialists who are knowledgeable, experienced and readily available for our cystic fibrosis patients, including:

• Surgeons
• Transplant surgeons
• Obstetricians/gynecologists
• ENT specialists
• Rheumatologists
• Allergists/immunologists
• Endocrinologists
• Critical care specialists
• Pediatric psychiatrists and psychologists
• Hospice and palliative care medicine

Specialized Services for Cystic Fibrosis

If you or someone you love has been diagnosed with cystic fibrosis, the pulmonary team at UH Rainbow Babies & Children’s can provide the expert care needed. We have an entire team of pulmonologists that see patients at multiple convenient locations.