MaineHealth Maine Medical Center has been accredited by the Cystic Fibrosis Foundation as cystic fibrosis (CF) teaching center. Lead by board-certified pulmonologists, MaineHealth Adult Cystic Fibrosis Care Portland is the primary cystic fibrosis treatment center in Maine. Our state of-the-art care includes advanced technology, patient educational materials and medication management.
Comprehensive Cystic Fibrosis Care and Education
At MaineHealth Adult Cystic Fibrosis Care Portland, our goal is to help adults integrate daily CF care into their daily lives. We focus on independent breathing and airway clearance techniques; medication management; and care for related diseases such as bronchiectasis, immotile cilia syndromes and sinopulmonary disorders. Our multidisciplinary team includes:
- Pulmonologists
- Nurses
- Nutritionists
- Social workers
- Physical therapists
- Respiratory therapists
- Palliative care specialists
Our compassionate team helps raise awareness of the disease in the general community, serving as an education and information resource, and conducting clinical research to improve the quality of care for CF patients.
MaineHealth Adult Cystic Fibrosis Care Portland provides sweat testing and genotyping as well as other diagnostic techniques to confirm or exclude a cystic fibrosis diagnosis. Most diagnosed patients are seen four times a year:
- Two comprehensive visits
- One multidisciplinary visit
- 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 be seen by one of the attending cystic fibrosis physicians and have spirometry (lung function testing) performed in addition to the general checkup. Since MaineHealth Maine Medical Center is a teaching institution, you may also be seen by a doctor in training (pulmonary residents and fellows).
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. 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 connect to the on-call physician. For emergencies, call 911. If you go to an emergency room, tell the doctor that you are a MaineHealth Adult Cystic Fibrosis Care Portland patient and they will contact our on-call physician.
MaineHealth Adult Cystic Fibrosis Care Portland 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.
Learn more 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.
