Treatment of Cystic Fibrosis

Maine Medical Center is a Cystic Fibrosis (CF) teaching center accredited by the Cystic Fibrosis Foundation. Our goal at MMC is to provide patients and families with comprehensive and compassionate care in a state-of-the-art facility.

Cystic Fibrosis is a hereditary chronic disease that affects the lungs and digestive system. Usually developed during early childhood, Cystic Fibrosis is characterized by the production of abnormally thick and sticky mucus by a defective gene. Instead of acting as a lubricant, this abnormally thick mucus can plug up tubes, ducts and passageways, especially in the pancreas and lungs, most often resulting in chronic respiratory infections and impaired pancreatic function.

We aim to raise awareness of the disease in the general community, serve as a local information resource, and conduct clinical research to improve the quality of care of CF patients.

Cystic Fibrosis Clinical Team Members at CMA include:

  • Karen Jarosz – CF nurse coordinator
  • Marissa Stanley – nutritionist
  • Russ Correia – social worker
  • Sue Butler-McNamara & Katie Norton – physiotherapists

Adult Cystic Fibrosis

Medical and social needs change as cystic fibrosis (CF) patients approach adulthood. A major goal of the Adult CF program is to help integrate daily CF care into the complexity of an active lifestyle.

Conditions such as diabetes and osteoporosis are much more commonly observed after age 18. College studies, employment, independent living and family planning are aspects of adult life, which my have an impact on daily CF care. Our goal is to make recommendations and plan for an easier transition into adulthood.

Cystic Fibrosis Center Research

The MMC Fibrosis Center actively participates in the Northern New England CF Consortium (NNECFC). The NNECFC is a regional, voluntary consortium of more than 70 clinicians and researchers from the CF care centers in Maine, New Hampshire and Vermont.

The mission of the group is to improve CF care and patient outcomes throughout the region through clinical research. MMC is currently developing an electronic system for tracking and improving patient care across the participating centers. This cooperative network of CF centers is serving as a national model for bringing state-of-the-art CF therapy to clinical use.

When To Call a Doctor

It is important to diagnose and treat cystic fibrosis early. Call your doctor if your child:

  • Has frequent lung infections (pneumonia), colds, an ongoing cough, shortness of breath, or wheezing.
  • Coughs up mucus that contains blood.
  • Does not gain or maintain weight.
  • Has smelly, large, greasy stools or diarrhea.
  • Has salty-tasting skin or sweat.
  • Tires easily during activity.
  • Has rounded, flat fingertips (clubbing).

Call your doctor if your child who has been diagnosed with cystic fibrosis gets worse in any way. Typically, this is when your child:

  • Has increased coughing or has a cough that is getting worse.
  • Has new wheezing or has wheezing that is getting worse.
  • Has more trouble breathing than usual.
  • Has lost weight or is not gaining weight, without an explanation.
  • Is having symptoms that you and your doctor have discussed as being more serious problems.