The Cystic Fibrosis Foundation supports the development of treatment guidelines that can be applied throughout the world. The following materials are presented with the permission of the Cystic Fibrosis Foundation to help prepare patients prior to their visits, help insurance companies to understand what tests, examinations, medicines and treatments need to be authorized, and to help primary care physicians understand what goes on at a Cystic Fibrosis Foundation Center visit.
Facts About Cystic Fibrosis is a great place to start.
The CF Preventive and Maintenance Care Patient Home Worksheet will help you to anticipate the information needed for your patient visit and the educational goals that each team member has for you. We suggest that you print these pages to prepare for your visit. You may download a form to fill out prior to the visit in Word 7.0 or above.
Preventive and maintenance care is the key to the advances made for the patient with cystic fibrosis. Your physician will need to know the name and phone number of your regular doctor and will ask about the things that are important to your health as an infant, a child, and an adult without cystic fibrosis. Then your physician will ask more questions about your health as it relates to cystic fibrosis--illnesses, nutrition, exercise, medicines, problems with digestion or cough, and so forth. Your physician will ask special questions about you if you have diabetes or a transplant or have reproductive issues.
A complete physical examination should be performed annually and will concentrate on nutrition and respiratory manifestations of cystic fibrosis.
To keep a step ahead of the disease we must look at medications and supplements--enzymes, vitamins, respiratory clearance and respiratory medications. We must also measure the effect of the disease with laboratory and imaging.
Your cystic fibrosis team also has a social worker or psychologist to help you and your family.
Our major goal is to make certain that all those around you who care for you--brothers and sisters, parents, relatives, doctors, respiratory therapists, blood drawers and X-ray technicians, your primary care doctor, your insurance company--BUT MOST IMPORTANTLY YOU! - understand how to provide the best possible care.
We do this through education and providing your doctor and insurance company with the case management plan that has been reviewed with you by your team at your visit.