The Cystic Fibrosis Center at the University of Michigan C.S. Mott Children’s Hospital has the largest program of its kind in the state, offering a multidisciplinary approach for complete care.
Care is delivered by an experienced team including 11 pediatric pulmonary faculty and a team of multidisciplinary specialists.
Cystic fibrosis care team members
- CF Center Director (Samya Nasr M.D.) works with all the CF care team members, is responsible for the Quality Improvement projects and work and Director of the CF clinical research in the center (The Cystic Fibrosis Foundation, Therapeutic Development Network).
- Pediatric pulmonologists diagnose and treat lung diseases and will work with you, your family and the other members of the care team to develop an individualized CF medical plan. This means the plan is based on your medical test results, changes to your health status, new available therapies and your personal goals.
- CF Center coordinator works with all members on the CF care team to ensure that the CF program runs smoothly, which can include participating in quality improvement (QI) initiatives and making sure that best practice care guidelines are properly implemented at your CF care center. Our Center Coordinator also runs our Family Advisory Board.
- Clinical dietitian is trained to assess your daily food intake, growth and your overall nutritional status. They help you work towards your optimal body weight so that you have the calories and nutrients needed to fight off lung infections and maintain lung function. With your personal goals and lifestyle in mind, your CF dietitian can teach you and your family how to adjust your eating habits, recommend dietary supplements and vitamins and adjust your enzyme intake.
- Social worker assists families in navigating the many dimensions of care including advocating with insurance, school and community resources and providing supportive counseling to families. Maintaining your health by taking your medications and doing your therapies can be challenging and affect how you live your life. You may feel overwhelmed trying to keep up with school, work or your relationships, which could have an emotional impact. This is where the social worker on your CF care team can help. Social workers can provide direct guidance to help you navigate your health insurance coverage, make tough decisions about school or the next steps in your career. They can also refer you to specialists so you can get the help you need.
- Nursing team includes registered nurses to provide care coordination, family and professional education and phone support. CF nurses specialize in CF care and is your primary contact to address your concerns, answer questions or direct you to the right CF care team member when discussing a specific part of your treatment plan. CF nurses also have the primary responsibility of providing CF education at initial diagnosis and throughout life.
- Respiratory care clinical specialist. During your care center visits, the CF respiratory therapist performs pulmonary function tests (PFTs) to measure the air flow and volume in your lungs. This team member also helps you with your pulmonary therapies, which are designed to clear mucus (sputum) out of your lungs, control bacteria and reduce the inflammation of your airways. These therapies involve airway clearance techniques (ACTs) and inhaled or nebulized medications. CF respiratory therapist can teach you and your family how to properly take your inhaled medications. They can also show you how to use and care for the medical equipment used to deliver these medications into your lungs. This equipment may include nebulizers, air compressors and oxygen systems. With their help, you will learn how to clean and maintain this equipment while at home or even when you're travelling.
- Physical therapist. Not all CF care teams include a physical therapist. If yours does, then he or she is trained to design an exercise or physical activity program to fit into your daily routine. Regular exercise helps your overall health because it promotes heart and muscle function, which builds strength and gives you energy to live an active life. It is also important for your health with CF because it can help improve your ability to cough mucus out of your airways, which is critical for better lung function. Your physical therapist will work with you to design an exercise or fitness program that is based on your age, health status and include sports or other physical activities that you enjoy doing in order to maintain lung function and a generally good physical fitness level.
- CF pharmacist will help you learn about the benefits and potential side effects of your CF medications, including how to take your medication both at home and while you're in the hospital. CF pharmacists also check dosages so you get the right amount of medication at the right time in order to be the most effective.
- CF research coordinator can answer questions about a clinical trial and help determine if you are eligible to enroll or participate in a specific trial. Clinical trials usually take place at a care center that is also a research site.
- CF psychologist has expertise in identifying and treating problems with behavior, emotional challenges such as depression or anxiety, learning disabilities and social interactions with family, friends, peers or co-workers. The CF psychologist on your team may also help you overcome problems with balancing treatments and other aspects of your life by teaching you coping strategies. The sessions you have with a psychologist may be brief consultations during regular CF care center visits or during CF hospitalizations. You may also be referred to other therapists or mental health specialists for ongoing support.
Make an Appointment
To schedule an appointment to discuss cystic fibrosis care at U-M, call us at 734-764-4123.