Living with CF
If you or your child has cystic fibrosis (CF), you should learn as much as you can about the disease and how to manage it.
Cystic Fibrosis Complications
Diabetes that often requires different treatment from other forms is common. So is the bone-thinning disorder osteoporosis, which is treatable with medicines.
It is important to have ongoing medical care by a team of doctors, nurses, and respiratory therapists who specialize in CF. A checkup every three months is standard. Take all medicines as ordered. 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 dark green vomit.
- A fever, which is a sign of infection.
Transition of Care
Because people today with CF are living longer than ever the move from pediatric to adult care is very important. Children should learn as much as possible about their condition and take an active role in treatment. Consult your child's healthcare team about how to help the move from pediatric to adult care.
CF Care Centers can help provide age-appropriate treatment. They also will support the transition to adult care by balancing medical needs with other developmental factors, such as increased independence, relationships, and employment.
Between checkups practice healthy self-care:
- Consume a diet with plenty of fruits, vegetables, and whole grains
- Do not smoke and avoid tobacco smoke.
- Wash your hands often to lower risk of infection.
- Exercise regularly and drink lots of fluids.
- Do chest physical therapy, as recommended.
CF may cause fear, anxiety, depression, and stress. Sharing your feelings with your healthcare team and working with a professional counselor can help. Your doctor may recommend medicines or other treatments to improve your quality of life. Joining a patient support group and seeing how other people cope with the disease is good, too. Best of all is support from family and friends—letting them know how you feel and how they can help.