A Health Guide for Adults with Cystic Fibrosis
Guidelines for care of the adult with CF have been set by the Cystic Fibrosis Foundation (CFF). These guidelines take into account the most current evidence and expert views about the care and treatment of CF. One of the goals of CF care is early identification and treatment of problems. With the use of screening tests and regular check ups, your health care team can help you decide about aspects of care for your lungs, digestive system, endocrine system and overall well being. Below are the guidelines from the CFF that our adult CF center at UW Hospitals and Clinics follows. We would like you to have a copy of these guidelines so that you may help us to provide the best care for you.
Daily
- Airway clearance and/or aerobic exercise
This will maintain lung health and strengthen your immune system. Exercise also helps your body to handle respiratory exacerbation and infection.
- A well-balanced diet
Keeping a healthy weight is vital in CF and relates closely with lung health.
- Close monitoring of respiratory symptoms
The quicker an exacerbation is noticed, the easier it is to control. Watch for sputum, cough, shortness of breath, and chest pain. A change in such symptoms may be signs of an exacerbation.
- Daily use of prescribed medicines
The medicines that you are taking are proven to have a positive effect in people with CF. Make time in your schedule for these much needed medicines.
Four Times a Year
You should have a check up by a member of your health care team at least four times a year to review your treatments and assess your health. These visits allow your doctor to show you new treatments and assure that you are getting the best health care. During these visits, a sputum culture should be obtained in order to guide antibiotic treatment if an exacerbation were to occur.
Twice a Year
At least twice a year, you should have pulmonary function testing (PFTs) performed. Along with your symptoms, PFTs will help to guide treatment in order to keep your lungs healthy.
Once a Year
Lab testing should be done once a year.
- A complete blood count checks red blood cells that carry oxygen, white blood cells that fight infection, and platelets that help with blood clotting.
- Electrolytes and kidney function are needed for healthy function of cells. With CF, these may be out of balance.
- Glucose is a screening test for diabetes, a problem with CF.
- Liver enzymes, bilirubin, and blood clotting factors that are made by the liver need to be checked since the liver may be affected in CF.
- Immunoglobulin E (IgE) is higher in allergic bronchopulmonary aspergillosis, a problem of CF lung disease.
- Vitamin levels (A, D and E) are checked yearly since the pancreas cannot fully absorb these in CF.
Experts in nutrition, respiratory care, social work, and nursing should meet with you at least once during the year to assess your needs and offer choices about diet, airway clearance, insurance, and other social issues.
Other Tests
- Chest x-rays help to show if disease is severe in certain segments of your lungs. Your doctor may want to perform a CT scan of the chest in order to have a sharper image of your lungs.
- Bone density scanning can show bone thinning (osteoporosis) or early signs of it. There are medicines and vitamins that can help prevent and treat bone thinning.
- An oral glucose tolerance test may need to be performed. This may help show CF-related diabetes (CFRD) or early CFRD. Changes in your diet and medicine help prevent and treat CFRD.
Health Maintenance Calendar for Adults with CF
| Daily |
Airway clearance and/or exercise Medicines Well-balanced diet |
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| Four times a year |
Sputum cultureClinic visit |
Sputum culture Clinic visit |
Sputum culture Clinic visit |
Sputum culture Clinic visit |
| Twice a year | Pulmonary function testing | Pulmonary function testing | ||
| Once a year | Lab testing (complete blood count, electrolytes, kidney function, glucose, liver functions tests, IgE, vitamin levels) Nutrition evaluation Respiratory care review Social work assessment Nurse specialist evaluation |
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| Other tests | Chest x-ray every 2-4 years Bone density scan every 2-5 years Oral glucose tolerance test |
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The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 04/05/2010
Copyright © 04/05/2010 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#6185
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