CF Nurse Coordinator

The CF Nurse Coordinator is responsible for coordination of the entire CF Program. This includes managing the CF clinic schedule and appointments.  The scheduling entails assigning visits with the CF team members, scheduling of patient tests and procedures, CF education, and conducting pre- and post-clinic conferences. The nurse coordinator is also available for phone triage and outpatient case management. Working closely with the inpatient nursing team, the nurse coordinator attends care conferences and meets with the discharge planners. The coordinator also provides education to schools, day care, nursing, medical students, and other health care providers and serves as the research coordinator for several research studies.

Respiratory Therapist

A Respiratory Therapist (RT) is trained to look at lung health.  RT’s make suggestions to the physician about what is available and teach patients, their families and others (i.e. day care providers, school nurses) how to perform proper airway clearance. When in clinic an RT will collect sputum samples, perform Pulmonary Function Tests (PFT’s), and teach and review airway clearance.

Registered Dietician – Click below to view “Nutrition Spotlight” quarterly nutrition webpage

http://www.fahc.org/Medicine/Pulmonary/Cystic_Fibrosis/nutrition_mar2007.html

At each CF clinic visit, the CF Clinic Dietitian checks all patients’ weight and height to make sure they are growing well.  When needed, she works with the patients and their families to improve food choices for better growth and overall health.  The dietitian also works with the doctor to be sure vitamin and enzyme doses are correct.  In addition she is available to help parents work with picky eaters and other nutrition challenges related to their CF and growth. 
 

Social Work

Social workers help to improve the patients and their family’s quality of life by offering information, resources, and support services.  Working with the medical team, patient and family, the social worker also helps plan the care and treatment of patients.

Child Life Specialist

The healthcare environment brings with it many new and sometimes stressful experiences for children, teenagers, and families.  Child Life staff work with patients and their families to help them understand and cope with these experiences.  We provide opportunities for children to grow and develop normally while in the hospital, we prepare patients and families for procedures, and we help them cope with all aspects of their health care experiences.

Genetic Counselor

A genetic counselor helps you understand how cystic fibrosis runs in families.  The counselor also arranges genetic testing and interprets these tests for you and your family.

Newborn Screening

Newborn screening (NBS) for CF is now being routinely performed in many states.  The CF Foundation has recommended that this occur in all states.  Within the next several months, NBS will hopefully begin in Vermont.  The test involves a small blood sample taken from a heel stick shortly after birth.  The sample is already used to test for other congenital metabolic disorders.

Many infants with CF have evidence of injury to the pancreas.  The NBS test measures an immunoreactive trypsinogen (IRT) level which, when elevated, may be a sign of this injury.  Babies with high IRT levels then have their blood sample tested for a limited number of CF mutations.  Depending on the level, they are referred for a sweat test at an accredited CF Center and further evaluation if necessary.  Many infants with elevated IRT levels, however, do not have CF. Therefore, it is important that the other testing occur.  Even though the IRT level is a good NBS for CF, there are some infants who will be missed with this test.

Patient/Family Advisory

A Patient and Family Advisory has recently been formed.  If you are interested in participating or learning more about the advisory please contact our Cystic Fibrosis Center at 802-847-8600.