The University of Chicago Medicine Cystic Fibrosis Center was founded in 1967 and provides specialized care to patients with cystic fibrosis (CF), an inherited lung disease that requires management throughout your lifetime.
Our adult cystic fibrosis experts understand the distinct challenges facing adult CF patients and provide individualized care to ensure you have the best quality of life possible.
Today, people with CF are living longer than ever — some in their fifties and sixties. Many are leading rich lives, balancing work, family and social activities.
Our goal is to make the transition from adolescence to adulthood easier for people with CF. We do this by building a long-term partnership with our patients and providing them with a tools and support to lead meaningful lives while managing their condition.
UChicago Medicine's Adult Cystic Fibrosis Program is committed to helping adults learn to live longer, healthier lives with CF through education as well as treatment. Our staff helps coordinate the Chicago Cystic Fibrosis Awareness Day and produces a quarterly newsletter for families affected by CF.
In addition, as a teaching institution, we are committed to educating health care providers on the care of adult patients with CF.
How often should my appointments be?
You should schedule one comprehensive annual visit as well as shorter, follow-up appointments every three months.
Who can I expect to see during my doctor's visit?
You will meet with several members of the team, including the physician or nurse practitioner, the clinic nurse, the respiratory therapist, the dietitian and the social worker.
What can I expect during my annual visit?
Each year, we perform a thorough evaluation to monitor and track the progress of your CF. Tests may include:
- Blood tests to check your red and white blood cells, vitamin levels and organ function
- A respiratory therapy assessment to review your airway clearance techniques
- An oral glucose tolerance test (OGTT) to check how your body breaks down sugar
- A chest X-ray to check for changes in your lungs
- A bone density scan to look for any early bone loss, which is common in CF patients
I’m feeling great. Can I skip my appointment?
Even if you are feeling good, you should come to your appointments. This lets us to monitor your health over the course of the year. It also helps you stay up-to-date on your medications to help prevent your CF from getting worse.
Why do staff members wear gowns?
The gowns are protection for you. As health care providers, we come in contact with the many different bacteria, and we do not want to spread these from person to person.
Why do I need a sputum culture every visit?
Your sputum sample is tested for different types of bacteria as well as what antibiotics will work to kill the bacteria. Over time, some strains may become resistant to different antibiotics. Sputum cultures allow us to provide the best possible treatment for you.
Why do I need spirometry every visit?
Spirometry is an important tool to monitor lung function. It helps us determine if we should change your treatment plan.
What are my responsibilities as a patient?
You play an important role on your care team. To make sure you receive the best care:
- Know which medications you take, and bring a list of them to each visit. Tell us if you need refills.
- If you are having insurance issues, let us know. This is common as patients transition from our pediatric program to our adult program.
- Be honest about your treatment plan and any concerns you have. Let us know how we can help.