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. |