Cystic Fibrosis Care Center

The CF Foundation has established guidelines for maintaining the health of all patients with cystic fibrosis which reflect the most up-to-date evidence and expert opinion on the treatment of CF. We use these guidelines to structure each patient’s care, including annual clinic visits, routine clinic visits, and as needed or “PRN” clinic visits.

All patients over the age of 3 year will be asked to wear a mask in the waiting room and in the halls to protect themselves and others from the spread of bacteria.

Annual Visits

Once a year, each patient is scheduled for a special annual visit. The purpose of this visit is for the team to perform an in-depth review of each aspect of your CF care. This visit may require you to fast, (nothing to eat or drink after midnight the night before your visit).

This visit will include the following:

Blood testing
Complete blood count to check for anemia, basic chemistry panel to check for electrolyte imbalances and kidney function, liver function testing to screen for CF-related liver disease, immune globulins to check for an allergic response and to screen for allergic bronchopulmonary aspergillosis (ABPA), and vitamin levels to check for inadequate absorption of fat soluble vitamins

Pulmonary Function Testing (PFTs)
To monitor lung function (performed at each visit in patients who are able to cooperate, usually after the age of 5 years)

Chest X-ray
To help monitor for any changes in the lungs and airways

Sputum or Throat Culture
To monitor what organisms are growing in the airway and guide antibiotic therapy if needed

Glucose Tolerance Test
To check for early signs of CF-related diabetes so that if detected, it can be treated effectively

Airway Clearance Review
To make sure your respiratory care equipment is working correctly and that you are performing the best quality airway clearance

Nutritional Evaluation
Nutrition is very important to good lung function. The Nutritionist will track weight and height and help provide a comprehensive nutrition plan.

Social Work Assessment
To ensure that you have access to all the resources and support that you need to successfully treat CF

Routine Visits

Pediatrics
Routine clinic visits are scheduled every month for infants 0-6 months of age, every 2 months for infants 6-12 months of age, and every 2-3 months for patients over the age of 1 year. These visits usually last from 1-2 hours. During these visits, you can expect to have your height and weight measured, undergo lung function testing (PFTs), and meet with a CF physician or nurse practitioner. You will also meet with other CF team members as needed.

Adults
Routine clinic visits are scheduled on Friday afternoons and Wednesday mornings. These visits may last between 1-2 hours. During these visits, you can expect to have your height and weight measured, undergo lung function testing (PFTs) and meet with your CF physician. You will also meet with other CF team members as needed.

As needed (PRN)/Sick Visits
If you are sick, and have a cold that is lasting than normal, have developed an increased couth or other difficulties, call the CF center nurse. We may recommend treatment that can be done at home, or we may schedule a PRN visit to the center to address your symptoms.