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 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.

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.

The Adult Cystic Fibrosis Center frequently takes on patients who are transitioning from pediatric programs. The program has been in place since 1980 to facilitate the transition of our pediatric patients to adult care in coordination with the Pulmonary Division in Internal Medicine at the University of Michigan. 

At C.S. Mott Children's Hospital our efforts center on preparing our patients for the ultimate transition to adult care and the active transition of patients between care teams.

Preparing for transition

1. The transition process is introduced to patients and families at time of diagnosis or at their first visit to our center.
2. As patients get older, the team members gradually shift from interacting with parents to interacting with patients in clinic visits and during inpatient care.
3. In the early teenage years, the team members focus on reeducation of the teens and families about the disease process and purpose of medications and treatment plan.
4. Focus on promotion of self-management is led by our social workers and psychologists.  Independent visits are offered and encouraged.
5. Intervention with the teens and families to help improve adherence to treatment and resolve conflicts is done by social workers and psychologists during clinic visits and hospitalizations.
6. The adult CF team is an integral part of our annual newsletter and family education function to demonstrate collaboration between the two programs to patients and families.
7. Social workers evaluate patients for transfer readiness through mid to late teenage years.
8. In preparation for transition, the pediatric team re-introduces the transition process to patients when they reach their early teens, a time when they are gaining more independence.
9. The CF team will introduce and facilitate use of CF R.I.S.E., a CF Foundation supported transition readiness program designed to help people with CF gain the knowledge and skills they need to manage their CF more independently. 
10. Starting at mid teenage years, patients are periodically discussed in the monthly meeting between the pediatric and adult pulmonologists and transition coordinators (social workers).

Active transition process

1. The transition coordinator and the pediatric pulmonary team discuss the process with the patient and family. The adult pulmonologists are reviewed and a choice of an adult pulmonologist is made.
2. A patient ready for transition is reviewed in the monthly pediatric-adult CF meeting. Medical records are reviewed by the adult pulmonologist prior to meeting the patient and family.
3. A virtual “meet and greet” appointment will be offered to allow those with CF who are transitioning to meet their adult pulmonologist and some of the adult CF team prior to attending their first clinic appointment.  
4. A tour of the adult inpatient and outpatient facilities may be arranged at the preference of the person with CF who is transitioning.