Self-management

Lifestyle and home remedies

You can manage your condition and minimize complications in several ways. Always talk to your doctor before starting home remedies.

Pay attention to nutrition and fluid intake

Cystic fibrosis can cause malnourishment because the enzymes needed for digestion can't reach your small intestine, preventing food from being absorbed. People with cystic fibrosis may need a significantly higher number of calories daily than do people without the condition.

A healthy diet is important to maintain good lung function. It's also important to drink lots of fluids, which can help thin the mucus in your lungs. You may work with a dietitian to develop a nutrition plan.

Most people with cystic fibrosis need to take pancreatic enzyme capsules with every meal and snack. In addition, your doctor may recommend:

  • Antacids
  • Supplemental high-calorie nutrition
  • Special fat-soluble vitamins
  • Extra fiber to prevent intestinal blockage
  • Extra salt, especially during hot weather or before exercising
  • Adequate water during hot weather

Keep immunizations up to date

In addition to other usual childhood vaccines, people with cystic fibrosis should have the annual flu vaccine and any other vaccines their doctor recommends. Cystic fibrosis doesn't affect the immune system, but children with cystic fibrosis are more likely to develop complications when they become sick.

Exercise

Regular exercise helps loosen mucus in your airways, and strengthens your heart. For many people with cystic fibrosis, participating in sports can improve confidence and self-esteem. Anything that gets you moving, including walking and biking, can help.

Eliminate smoke

Don't smoke in your home or car, and don't allow other people to smoke around you or your child. Secondhand smoke is harmful for everyone, but especially for people with cystic fibrosis.

Encourage hand-washing

Teach all the members of your family to wash their hands thoroughly before eating, after using the bathroom, when coming home from work or school, and after being around a person who is sick. Hand-washing is the best way to protect against infection.

Attend medical appointments

You'll have ongoing care from your doctor and other medical professionals. Make sure to attend your regular follow-up appointments. Take your medications as prescribed and follow therapies as instructed. Contact your doctor if you experience any signs or symptoms such as severe constipation, more mucus than usual, blood in your mucus or reduced energy.

Coping and support

If you or someone you love has cystic fibrosis, you may experience strong emotions such as anger or fear. These issues are especially common in teens. Talking openly about how you feel can help. It also may help to talk with others who are dealing with the same issues.

That might mean joining a support group for parents of children with cystic fibrosis. Older children with the disorder may want to join a cystic fibrosis group to meet and talk with others who have the disease.

If you or your child is depressed or anxious, it may help to meet with a psychologist. He or she may suggest medications or other treatments as well.

Spend time with friends and family. Having their support can help you manage stress and reduce anxiety. Ask your friends or family for help if you need it.

Take time to learn about your or your child's condition. If your child has cystic fibrosis, encourage him or her to learn about the condition. Find out how medical care is managed for children with cystic fibrosis as they grow older into adulthood. Ask your child's doctor if you have questions about your child's care as he or she becomes older.

Prevention

If you or your partner has close relatives with cystic fibrosis, you both may want to undergo genetic testing before having children. The test, which is performed in a lab on a sample of blood, can help determine your risk of having a child with cystic fibrosis.

If you're already pregnant and the genetic test shows that your baby may be at risk of cystic fibrosis, your doctor can conduct additional tests on your developing child.

Genetic testing isn't for everyone. Before you decide to be tested, you should talk to a genetic counselor about the psychological impact the test results might carry.

Oct. 13, 2016
References
  1. What is cystic fibrosis? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/cf. Accessed July 1, 2016.
  2. Goldman L, et al., eds. Cystic fibrosis. In: Goldman-Cecil Medicine. 25th ed. Philadelphia, Pa.: Saunders Elsevier; 2016. http://www.clinicalkey.com. Accessed April 13, 2016.
  3. Kliegman RM, et al. Cystic fibrosis. In: Nelson Textbook of Pediatrics. 20th ed. Philadelphia, Pa.: Elsevier; 2016. http://www.clinicalkey.com. Accessed April 13, 2016.
  4. National Library of Medicine. Cystic fibrosis. Genetics Home Reference. https://ghr.nlm.nih.gov/condition/cystic-fibrosis. Accessed May 3, 2016.
  5. What is bronchiectasis? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/brn. Accessed April 13, 2016.
  6. AskMayoExpert. Cystic fibrosis. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2016.
  7. Katkin JP. Cystic fibrosis: Clinical manifestations and diagnosis. http://www.uptodate.com/home. Accessed April 13, 2016.
  8. Katkin JP. Cystic fibrosis: Genetics and pathogenesis. http://www.uptodate.com/home. Accessed April 28, 2016.
  9. Anatomic problems of the lower GI tract. National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/anatomic-colon/Pages/facts.aspx#Intussusception. Accessed June 24, 2016.
  10. Simon RH. Cystic fibrosis: Overview of the treatment of lung disease. http://www.uptodate.com/home. Accessed April 13, 2016.
  11. Simon RH, et al. Cystic fibrosis: Investigational therapies. http://www.uptodate.com/home. Accessed June 28, 2016.
  12. Quon BS, et al. New and emerging targeted therapies for cystic fibrosis. BMJ. 2016;352:i859.
  13. Elborn JS. Cystic fibrosis. Lancet. In press. Accessed June 15, 2016.
  14. Orkambi (prescribing information). Boston, Mass.: Vertex Pharmaceuticals Inc.; 2016. http://pi.vrtx.com/files/uspi_lumacaftor_ivacaftor.pdf. Accessed June 30, 2016.
  15. Riggin ER. Allscripts EPSi. Mayo Clinic, Rochester, Minn. April 8, 2016.
  16. Erasmus DB (expert opinion). Mayo Clinic, Jacksonville, Fla. Aug. 4, 2016.

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