Living With Cystic Fibrosis

If you or your child has cystic fibrosis (CF), you should learn as much as you can about the disease. Work closely with your doctors to learn how to manage CF.

Ongoing Care

Having ongoing medical care by a team of doctors, nurses, and respiratory therapists who specialize in CF is important. These specialists often are located at major medical centers.

It's standard to have CF checkups every 3 months. Talk to your doctor about whether you should get an annual flu shot and other vaccines. Take all of your medicines as your doctor prescribes. In between checkups, be sure to contact your doctor if you have:

• Blood in your mucus, increased amounts of mucus, or a change in the color or consistency of your mucus.
• Decreased energy or appetite.
• Severe constipation or diarrhea, severe abdominal pain, or vomit that's dark green.
• A fever, which is a sign of infection. (However, you may still have a serious infection that needs treatment even if you don't have a fever.)

Lifestyle Measures

In between medical checkups, you can practice good self-care and follow a healthy lifestyle.

An important part of a healthy lifestyle is following a healthy diet. A healthy diet includes a variety of fruits, vegetables, and whole grains. Talk to your doctor about what types and amounts of foods you should include in your diet.

Other lifestyle measures include:

• Not smoking and avoiding tobacco smoke
• Washing your hands often to lower your risk for infection
• Exercising regularly and drinking lots of fluids
• Doing chest physical therapy (as your doctor recommends)

Other Concerns

Although CF requires daily care, most people who have the disease are able to attend school and work.

Adults who have CF can expect to have a normal sex life. Most men who have the disease are infertile. However, modern reproductive techniques may help them. Men who have CF should still have protected sex to avoid sexually transmitted diseases.

Women who have CF may find it hard to get pregnant, but they usually can have children. If you have CF, you should talk to your doctor if you're planning a pregnancy.

If your child has CF, encourage him or her to learn about the disease and take an active part in his or her treatment.

Emotional Issues

Living with a chronic disease may cause fear, anxiety, depression, and stress. It's important to talk about how you feel with your health care team. Talking to a professional counselor also can help. If you're feeling very depressed, your health care team or counselor may prescribe medicines to make you feel better.

Joining a patient support group may help you adjust to living with cystic fibrosis. You can see how other people who have the same symptoms have coped with them. Talk to your doctor about local support groups or check with an area medical center.

Support from family and friends also can help relieve stress and anxiety. Let your loved ones know how you feel and what they can do to help you.