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

A diagnosis of CF might raise a variety of feelings and emotions, including:

  • Concern for one's well-being
  • Resentment of the time and attention required
  • Fear of the unknown
  • Guilt for inheriting a disease from one's parents
  • Anger that this has happened
  • Worry about the future

Our psychosocial team can help by:

  • Enhancing communication between the family and other health care providers
  • Teaching a patient or family 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

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. This coverage ends at age 21. Others may be covered under a parent's medical insurance policy. This coverage usually ends once a patient reaches adulthood and/or is no longer a full-time student.

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

About employment

One of the many choices we face in life involves our future careers.

This is no different for those living with cystic fibrosis. People with cystic fibrosis hold a wide variety of jobs in many work settings, but some important considerations should be taken before deciding on a career:

  • A career choice needs to be driven by a person's interests and skills. When living with cystic fibrosis, however, it is best to avoid jobs that would expose someone to air pollution, smoke, dust, fumes, infectious diseases, etc.
  • Keep in mind that heavy physical labor may be difficult to sustain over many years.

Vocational rehabilitation programs can provide help with career planning and job choices. A cystic fibrosis social worker can help you connect to those programs.

Employment resources