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What to Expect

We understand that a cystic fibrosis diagnosis and a first visit to the clinic can be stressful.

Here’s what you should bring with you to your first appointment:

  • Insurance card
  • Authorization from your insurance company
  • Name and phone number of at least one contact person
  • List of current medications
  • List of current treatments
  • Health history since last visit, including any new drugs or allergies
  • Your list of questions

Once the receptionist signs you in, you’ll meet the care team, including:

  • Patient service coordinators: Gather information to register patients, help schedule appointments and labs, and can also help handle any issues related to insurance or medication
  • Nurse coordinators: Introduce you to the care team and provide contact information and a binder to organize all visit materials, including educational information and lab results
  • Respiratory therapists: Help educate patients and families about nebulizer use and airway clearance therapy they can do at home, and perform spirometry tests on older patients to test lung function
  • Dieticians: Help with diet and meal planning, including tips on adding salt to the child’s diet, and ensure children are growing well and gaining weight
  • Social workers: Help families make sense of new and often confusing medical information, provide support, and connect families with resources and support groups

Medical tests that may be performed, depending on the patient:

  • Sweat test: Patients who show symptoms of cystic fibrosis or babies who have a positive newborn screen for the disease can take a sweat test, which provides a conclusive diagnosis by measuring the concentration of salt in a person's sweat. This simple, painless test is the most reliable way to diagnose cystic fibrosis.
  • Spirometry: For non-infants, these painless tests help measure lung function
  • Chest x-ray: Done annually to detect subtle changes in the lungs
  • Sputum culture: A test that checks for bacteria in the matter coughed up from the lungs
  • Blood tests: Including serum cholesterol, liver function and blood sugar

For more information on the care team and what happens during your first visit, check out Stanford School of Medicine’s Cystic Fibrosis Center.