As an adult with CF, how often should I see my doctor?

The CF Foundation recommends that you see your doctor for regular check-ups every three months. That is how often we see patients here at the Center. If you have warning signs of an exacerbation, however, don’t wait – you should call to see your doctor right away.

What are the warning signs of a CF exacerbation?

The signs of an exacerbation can vary from person to person, and not everyone experiences all of these symptoms every time. But these are the common warning signs of a pulmonary (lung) exacerbation: more coughing/wheezing than usual; chest congestion; increased mucus; sputum color changes or hemoptysis (blood in the sputum); feeling more tired, with less energy than usual; reduced lung function on PFT (Pulmonary Function Test); poor appetite and/or weight loss; and, sometimes, fever. If you think you are having an exacerbation, call to see your doctor right away.

Why am I sometimes put on isolation?

When your sputum culture is identified as having microorganisms that are resistant to 2 or more classes of common antibiotics used to treat your infection we place you on isolation for your protection and the protection of other patients in the hospital.

Airway clearance doesn’t make me cough – am I not doing it correctly?

The purpose of airway clearance is not to produce a cough, but to loosen the mucus pockets in your airways so that when you do cough, the mucus will come out more easily. So continue with your ACTs!

When should I take my pancreatic enzyme replacements?

It’s important to take them every time you eat anything that contains fat. This means snacks (such as ice cream or string cheese) as well as meals, g-tube feeds, oral supplements, and fat soluble vitamin.

Why can’t I take generic pancreatic enzyme replacements – aren’t they all alike?

No. People with CF should NEVER take generic enzymes because the contents of these enzymes are not consisent and, as a result, do not work as well.

Are there any state-funded programs in California to help cover the costs of CF healthcare?

Yes. The state of California Department of Health Services has the Genetically Handicapped Persons Program (GHPP) for adults over 21 years of age. It helps to cover costs related to hospital care, surgery, home care equipment, physical therapy, prescription medicines and food supplements for those who qualify. For more information, talk to your social worker here at the Center, or call GHPP directly at 800-639-0597.

Does Medicare Part D cover CF medications?

It depends on the Medicare Prescription Drug Program (PDP) that you are enrolled in. Most of the PDPs require patients to meet an annual deductible and to make co-payments for drugs. If your resources are less than $11,500 (single) or $23,000 (married), you may qualify for extra help to pay for Medicare Prescription Drug Coverage. If you have questions, talk your social worker here at the Center. Call the CF Legal Information Hotline at 800-622-0385, or visit the Medicare at www.medicare.gov.

For a physician referral, call 1-888-700-5700.