WHAT TO EXPECT
There are three types of visits at many CF Centers:
• Well visits
• Sick visits
• Annual visits
Well visits:
Congratulations, you have taken good care of yourself and can be rewarded with a straight forward doctor visit. There are up to four well visits each year; one of which is also the “annual visit.”
1. Medication update: Your nurse will record any changes your medications
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Pulmonary Function Test (PFT): This involves blowing into a tube to measure your breathing abilities and lung capacity. It takes about ten minutes.
6. Sputum sample collection: Usually after your PFTs you will need to cough some sputum into a cup. This will be tested by the hospital’s lab.
7. Blood test: If you have CFRD, this test must be done at every visit or a week or so before (so that there's enough time to get the results back) to check your Hemoglobin A1C. Your doctor will have the blood tested for other things when necessary.
8. Meeting with your doctor: This time allows the doctor to see how you are doing, answer questions, work on your plan of action, listen to your lungs, and write prescriptions if needed.
Sick visits:
1. Medication update
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Pulmonary Function Test (PFTs)
6. Sputum sample collection
7. X-rays
8. Any other labs that your doctor recommends
9. Blood test for CFRD patients
10. Meeting with your doctor
Annual visits:
1. Medication update
2. Weight and height measurement
3. Blood pressure test
4. Temperature measurement
5. Annual "body box" test instead of PFTs: The "body box" is like the PFTs, only done on a more high tech machine. It takes about twenty minutes.
6. Annual X-rays (if not recently done on a sick visit)
7. Annual blood test
8. Annual and less frequent vaccines
9. Biannual prescription refill update: Your doctor usually prescribes enough refills to last several months to a year. At this time they may have run out, so make sure you are updated.
10. Annual bone density test: You may need this test annually to monitor osteoporosis. This test can be scheduled at your convenience at a nearby location.
11. Annual cat scan: This tests helps doctors see a detailed picture of your lungs.
CF TEAM MEMBERS TO MEET WITH
Genetic counselor:
Schedule as needed.
Arrange to meet with your CF Center's genetic counselor, the person that:
• Educates patients and families about the inheritance of CF.
• Addresses the unique emotional impact of having a child with a genetic disorder.
• For newly diagnosed adults, the genetic counselor is integral to the initial diagnostic evaluation process.
• Coordinates all aspects of DNA testing and interprets laboratory results.
• Coordinates sending DNA samples for CF gene sequencing.
• Meets with parents of children who have screened positive for CF.
• Counsels family members of our patients who inquire about carrier screening, prenatal, or pre-implantation diagnosis.
• Identifies patients who do not meet the CF Foundation Guidelines for a CF diagnosis due to incomplete mutation status and borderline sweat testing.
• Works with men and women with CF who would like to start a family of their own.
Social worker
Schedule at your annual visit.
Your social worker will provide you with resources for the financial and psychological sides of CF.
Nutritionist
Schedule at your annual visit.
If you are having trouble getting enough calories or your food choices are affecting your blood sugar, you may want to schedule a visit with a nutritionist to get some fresh ideas. This person can help you figure out how many calories are in your current and future meal plans.
PREPARATION FOR THE VISIT
Scheduling:
If you arrive half an hour before your scheduled appointment you will have time to get any lab work out of the way.
Pre-visit checklist:
1. Write your appointment in your calendar.
2. Get your Pre-Visit Blood Work done if you have CFRD. Bring your lab work prescriptions!
3. Make sure you have your CF Success Packet ready to go.
• Any new medications to add to your CF Treatments page?
• Will you need to ask for prescription refills?
• Do you have your Medical Data Calendar?
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