Cystic fibrosis is a genetic disease that can affect many different organs in the body, but most commonly affects the lungs. With proper diagnosis and care, people with cystic fibrosis can live healthy lives with near normal life spans. There are new patient-specific treatments available that will improve the health of people with cystic fibrosis more than previously thought possible. Read more about adult-onset cystic fibrosis.
The adult cystic fibrosis program at the University of Michigan’s Cystic Fibrosis Center is accredited by the Cystic Fibrosis Foundation and is currently the largest program of its kind in the state of Michigan. We offer a multidisciplinary approach for complete cystic fibrosis care, along with an active research program with access to cutting-edge treatments as they become available. Our long-established program has also received Quality Improvement Awards from the Cystic Fibrosis Foundation for sustaining quality improvement work that led to better health outcomes for people with cystic fibrosis.
Our Adult Cystic Fibrosis Center cares for patients over 18-21 years of age with cystic fibrosis. We currently take care of patients from all over the state of Michigan, as well as from the surrounding states of Ohio and Indiana. Patients can be referred to our clinic both by general primary care or pulmonary providers with a new suspected diagnosis of cystic fibrosis or by transitioning from a pediatric cystic fibrosis clinic.
About the Care Team at the Adult Cystic Fibrosis Program
Your multidisciplinary cystic fibrosis care team consists of a physician, nurse coordinator, social worker, dietician, respiratory therapist, pharmacist, and (+/-) research coordinators. All of these team members contribute to your care both in outpatient clinic and inpatient in the hospital.
Learn more about the Adult Cystic Fibrosis Clinic's team of professionals.
About Transitioning from the Pediatric to the Adult Cystic Fibrosis Program
The Adult Cystic Fibrosis Center frequently takes on patients who are transitioning from pediatric programs.
When it is time to move from the Pediatric Cystic Fibrosis program at the University of Michigan to the adult program, a transition appointment will occur at one of your regular appointments in the Pediatric Cystic Fibrosis Clinic. At this appointment, your pediatric cystic fibrosis doctor will introduce you to the physician and other members of the care team who will be assuming your care. Because good communication is important to a smooth transition, your new physician will spend time getting to know you and your family, answering questions, and explaining the adult care program during this initial meeting.
Your next appointment will be scheduled in the adult clinic with your adult cystic fibrosis physician at the location of the Adult Cystic Fibrosis Center. All of your medical records from the pediatric program will immediately be available to your new physician so no information will be lost during the transition.
More information about the details of the transition process at University of Michigan.
Clinic Location, Hours and Patient Information
The Adult Cystic Fibrosis Clinic at the University of Michigan is located in Reception Area C on the 3rd floor of the Taubman Center. The adult clinic is open regularly on Thursday and Friday afternoons, but you may be seen at other times when needed. The Pulmonary Function Laboratory is located in the Cystic Fibrosis Clinic area, blood drawing is just across the hall, and outpatient radiology is on the 2nd level of the Taubman Center, Reception Area A. The phone number for the adult clinic is 888-287-1084
Outpatient Appointment Information
We recommend that you visit the Cystic Fibrosis Clinic every 3 months, or more frequently if needed.
- You will meet with one of our dieticians, social workers, and physical therapists (is RT required too?) at least once a year, and more often when needed. You may also be seen by our respiratory therapist or pharmacist when clinically necessary. These are scheduled during your regular clinic appointments. All members of the care team are contributing to optimizing your care even if you did not see them during a clinic encounter.
- Each time you come to clinic, we will collect sputum or throat swabs for microbiology culture testing. We also recommend that at least once per year you have blood tests to identify potential problems before they cause you symptoms. Other routine or additionally indicated tests will be discussed and arranged by your care team.
- We will review the list of medications you are taking and ask if you need any refills at each clinic visit. Whenever appropriate, we try to use medications that are covered by your insurance company in order to reduce out-of-pocket expenses. We will also get prior authorizations from your insurance company if necessary. We will work closely with you in order to obtain access of important treatments for your cystic fibrosis care.
- At the conclusion of each visit, your next appointment(s) will be scheduled. If you need to reschedule an appointment, call 888-287-1084.
- If you are sick and feel you might need to be admitted for inpatient therapy, please call the nurse in the Pulmonary Clinic at 888-287-1084. Go to the emergency room if it is urgent or during a weekend or after hours.
- Adult patients are admitted to ward 6C in University Hospital. Ward 6C is a 32-bed, inpatient unit that has special expertise in pulmonary-related problems and cystic fibrosis.
- The inpatient care team includes a physician, pharmacist, nurse practitioners or physician’s assistants, physician therapists and respiratory therapists, and bedside nurses. Additional consultants such as subspecialty physicians or nutritionists are readily available upon request by the primary treating physician. There may be students or trainees involved in your care. The inpatient care team meets regularly with the outpatient care team to ensure optimal communication and care planning.
- Our Cystic Fibrosis Center will ensure coordinated, comprehensive care.
The Importance of Infection Control
To limit the spread of germs in the outpatient clinic, we avoid having two patients with cystic fibrosis use the same exam room on a single afternoon. Each night, the rooms undergo additional cleaning before the next day. We have waterless alcohol-based hand sanitizers placed in the exam rooms in the clinic. To limit the spread of germs in the inpatient hospital, we follow strict contact isolation protocols hospital wide. These measures have been quite effective in preventing the spread of germs at our Cystic Fibrosis Center. For more about the measures we take to prevent the spread of germs, you can speak with any member of our team.
A robust clinical and basic science research program has been developed in conjunction with the Cystic Fibrosis clinical center and is currently enrolling patients in research studies aimed at developing state-of-the-art diagnostic strategies as well as new, targeted therapies for patients with cystic fibrosis. By working in collaboration with the Cystic Fibrosis Foundation, industry sponsors, and individual investigators, we hope to collectively find a cure for cystic fibrosis.
Our Cystic Fibrosis Center also participates in the national Cystic Fibrosis Foundation Registry, which is used to track patient outcomes and enable informed decision-making about quality improvement initiatives and standardization of care protocols for patients with cystic fibrosis. This ultimately leads to improved patient-related outcomes.
For information about some of the clinical trials for which you may be eligible, visit the Cystic Fibrosis Foundation’s Clinical Trial Finder and search for enrolling studies close to your location.
Make an Appointment
To schedule an appointment to discuss adult cystic fibrosis, call us at 888-287-1084.