Adult Cystic Fibrosis
Our goal is to provide patients and families with comprehensive and compassionate care in a state-of-the-art facility. We also 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.
Medical and social needs change as CF patients approach adulthood. At the Adult CF program, our goal is to help integrate daily CF care into the complexity of active lifestyles. Conditions such as diabetes and osteoporosis are more commonly observed after age 18. Our Adult Program places special emphasis on independent breathing and airway clearance techniques that can generally be mastered only by older patients. We also care for other related diseases such as bronchiectasis, immotile cilia syndromes, and sinopulmonary disorders of uncertain cause.
We have a complete multidisciplinary team with specialized expertise in providing care to adult CF patients in an age-appropriate setting including:
- Social worker
- Physical therapist
- Respiratory Therapists
- Palliative Care Specialists
Our state of-the-art facility enables us to deliver the newest technologies, educational materials and medications to our patients. Achieving such excellence requires that we also provide responsive patient care and clear communication with referring physicians.
The Cystic Fibrosis Center at the Maine Medical Center provides sweat testing and genotyping as well as other diagnostic techniques to confirm or exclude a cystic fibrosis diagnosis. Most patients are seen four times a year at the CF Clinic, two comprehensive visits, one multidisciplinary visit and one "Goals of Care" visit, where long range goals and planning for major life events may be discussed.
General Clinic Visit:
For nearly all visits you will have spirometry (lung function testing) performed in addition to the general checkup.
As Maine Medical Center is a teaching institution, you may on occasion interact with a doctor in training or physicians going through the final phase of training in pulmonary medicine (Pulmonary Fellows). You will always be seen by one of the attending cystic fibrosis physicians. All members of the CF team are available to meet with you, should it be necessary on any given visit. However, you will not need to meet with every member of the team at every visit.
Annual Review Visit:
This is a comprehensive annual evaluation that includes assessment of blood chemistries, liver function, kidney function, lung function, blood sugar control, and vitamin levels. Other tests include:
- Urine analysis
- Sputum culture
- Chest x-ray
- Functional status/Exercise assessment
- Lung function testing
An in-depth evaluation of nutritional, social, and physical fitness needs will also be done, and a quality of life questionnaire may be administered. Additional testing may be done to check your bone density or hearing. Please plan to spend most of the day with us during your annual evaluation. During the morning you will have your testing done, and after lunch you will meet with the CF team to review available test results.
Monday – Friday 8:30 AM - 5:30 PM call (207) 662-5200
Option 1 - schedule an appointment
Option 2 - medication refill
Option 3 - speak to clinical staff
After 5:30 PM and on weekends, press 1 to get connected to the on-call physician. For emergencies, call 911. If you go to an emergency room, tell the doctor that you are followed in the Adult CF Program, and they will contact the physician on call for our service.
The CF Center actively participates in the Northern New England CF Consortium (NNECFC). The NNECFC is a regional, voluntary working group 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 enhance CF care and patient outcomes within our region through clinical research and quality improvement projects.
We are notified directly of all CF research trials seeking subjects through the Therapeutic Development Network (TDN) organized by the CF Foundation. As a designated TDN Center, we participate in clinical trials to identify new and improved treatments for CF.
Additional research information can be found at MaineHealth Institute for Research (MHIR).
Cystic Fibrosis Foundation
The mission of the Cystic Fibrosis Foundation is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease.
Northern New England Cystic Fibrosis Consortium
The mission of the NNECFC is to continuously improve the quality, safety, effectiveness and costs of care of CF patients and their families. This site contains a variety of educational videos targeted to CF patients in Maine.
CF Family Advisory Board
The Southern Maine Family Advisory Board aims to support and empower individuals living with Cystic Fibrosis and their families in their relationships with CF centers and hospitals in Maine; affect positive change by influencing the medical community, educational systems, workplace and government sectors; and accelerate the rate of improvement in CF care.
Cystic Fibrosis Center at Stanford
The CF Center at Stanford, located at the Lucile Packard Children's Hospital, is an integrated disease management program that follows patients from diagnosis through adulthood.
CFTR2 mutation database
CFTR2 is a website designed to provide information about specific cystic fibrosis (CF) mutations to patients, researchers, and the general public.