Cystic Fibrosis Care
We are a Cystic Fibrosis (CF) Care Center accredited by the CF Foundation. As part of the CF Care Center Network, we have the opportunity to contribute data to the patient registry and provide comprehensive, specialized service to our patients. Our Cystic Fibrosis Services range from diagnostic sweat and genetic testing to disease management and patient and family education. As part of East Tennessee Children's Hospital, we are able to provide this specialized care for approximately 170 children with CF in East Tennessee and the surrounding region.
Information for Parents
What is Cystic Fibrosis?
All About Cystic Fibrosis - Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF Genetics: The Basics - Every person has two copies of the cystic fibrosis transmembrane conductance regulator (CFTR) gene. A person must inherit two copies of the CFTR gene that contain mutations -- one copy from each parent -- to have cystic fibrosis.
Symptoms of Cystic Fibrosis:
- Chronic respiratory issues (coughing, wheezing, or recurrent lung infections)
- Salty tasting skin (as symptom parents often notice when kissing a child)
- Meconium ileus, a thick and sticky first bowel movement of a baby that can block the small intestine
- Greasy, bulky and foul-smelling stools or constipation
- Poor growth and failure to thrive (not gaining enough weight after birth)
Treating Cystic Fibrosis During COVID-19
The Cystic Fibrosis team at East Tennessee Children’s Hospital hopes you’ll be able to breathe easy during COVID-19. CF is one of the many teams at Children’s Hospital working to help your children stay safe. Be patient with COVID-19, and we will see you soon!
Cystic Fibrosis Clinic
Cystic Fibrosis Clinic is held Tuesdays, Wednesdays, and Thursdays in the Pulmonology Clinic on the 1st floor of the South Tower. We see our patients at least one time every three months, but this varies depending on the specific needs of the patient and family. If the patient is a newly diagnosed child with CF or is having an acute illness, we will see them more frequently. During the clinic, each patient is seen and cared for by a multi-disciplinary team that is specially trained and educated in CF care. The Team works together to provide the support and education that is necessary for our patients and families to effectively manage their CF at home. Families should be prepared to spend ample time with us on clinic day because we want to provide you with a complete and thorough visit each time you come.
The East Tennessee Children's Hospital CF Care Center has been serving this area for over 30 years. Because Cystic Fibrosis is a complex disease that affects so many body systems, the CF Center is staffed by a dedicated multi-disciplinary team. The CF team at East Tennessee Children's Hospital works with each CF family to meet their individualized needs and keep them as healthy and involved as possible. Over the past 30 years, we have striven to be a leader in CF disease management with continuous education and updates for our staff. We actively participate in quality improvement initiatives and projects to identify opportunities for betterment.
Our goal for patients is to live long, full lives. In working together with CF families and professionals, we know we can achieve this goal.
- Laura Trentham, MSN, CPNP-AC/PC
Assistant Program Coordinator:
- Connie Ochoa, RRT
- Jenny Perez, RRT
- Matt Spangler, RRT
- Michelle Tackett, RRT
- Kristi Howley, RD - Clinical Nutrition Specialist
- Olivia Day, MS, RD, LDN - Clinical Nutrition Specialist
We also work closely with other pediatric subspecialties such as endocrinology, ENT and GI to provide comprehensive care for our CF patients. The specialists that we work with have expertise and experience in treating CF in children.