Living With Cystic Fibrosis

Managing cystic fibrosis symptoms

To manage the symptoms of cystic fibrosis (CF), patients should try to:

  • Reduce the risk of infection. Stay current with vaccinations, wash hands often, and avoid situations where you are likely to come into contact with dangerous germs.
  • Exercise as your doctor advises. Exercise helps to clear the lungs, strengthens breathing muscles, and improves the overall fitness of the lungs and heart. It also makes you feel good!
  • Eat as your doctor advises. Good nutrition is especially important for people with CF due to increased caloric demand and incomplete digestion.
  • Avoid tobacco smoke. People with CF should not smoke or be exposed to it!
  • Get lots of rest. Rest helps your body fight illness and helps you stay well.
  • Keep your appointments with the Cystic Fibrosis Center. It is important to meet with your team on a regular basis, not only to detect any changes in your health, but also to find out about new treatments that might help to improve your condition.

Emotional health

Often the social, emotional, and psychological impacts of cystic fibrosis can seem as daunting as the physical symptoms.

Our social workers and a psychologist work together to help patients with CF and their families deal with these important issues.

Our psychosocial team can help by:

  • Enhancing communication between the family and other health care providers
  • Teaching patients and families ways to cope with the stress of chronic illness
  • Helping to obtain financial assistance
  • Preparing a patient for the transition to adult care
  • Identifying stress that might benefit from professional attention
  • Helping patients find mental health treatment like psychotherapy or pharmacotherapy

Although CF affects a patient physically and emotionally, people with CF can and do lead happy, active, and fulfilling lives.

Insurance information

For many people diagnosed with CF as children, state programs for children with special needs have helped provide medical coverage.

It is important to think about medical insurance when looking for a first job or when seeking a job with a new employer. It's an excellent idea to evaluate the medical plan offered by the employer, check out the type of benefits included in the policy, and learn about the employer's policy limitations.

Questions to consider when looking at insurance benefits

  • Are you able to choose which doctor you see?
  • What sort of coverage does the policy have for prescriptions or for durable medical equipment (oxygen, insulin pumps, etc.)?
  • Is there a limit on how much can be spent annually for prescriptions or for that equipment?
  • Is case management available through the insurer?

Working with your CF social worker and your insurance case manager whenever possible and educating your insurer about cystic fibrosis also helps create a positive relationship with your insurance provider.

Insurance resources