Cystic Fibrosis (CF) Care Team
Managing treatment for cystic fibrosis (CF) is a team effort. Given the many ways living with CF can impact a person, it takes a variety of specialists to keep you as healthy as possible. Here are some of the specialists who may be on your CF care team.
Patient, patient advocate, and/or parent
You are one of the most important people on your CF care team! You bring the awareness of your body, how you are feeling, what is going on, and what you feel you need from your medical team. Coming to each appointment prepared to discuss your treatment, what you feel is helping or not helping, concerns you have, ideas you want to try, and generally being your own best advocate or advocate for your child is a critical part of managing your care.1,2
Nurse/Nurse Practitioner/Physician Assistant
The registered nurse (RN) or physician assistant (PA) is often the primary contact member of your health team. The RN or PA helps to coordinate with other CF care team members, answer questions, and get you started when coming for a full day of appointments at your CF care center. Any question you have can start with your RN or PA.1,2
Questions to ask an RN/PA:
- What is my schedule for visits today?
- I am not feeling well. My symptoms are _____. What should I do?
A pulmonologist is a doctor who specializes in the lungs. The pulmonologist will (likely) be the primary doctor on your CF care team. The pulmonologist will make treatment recommendations and be up-to-date on clinical trials for which you may be a candidate. Pulmonologists order lab work, perform medical exams, and make changes to your plan based on the results.1,2
Questions to ask a pulmonologist:
- I have been feeling ___ since starting ___ medication. Is this the best option or is there something else we could try?
- What are my pulmonary function levels and what do they mean?
A registered dietitian (RD) or nutritionist (RDN) specializes in nutrition and recommending what foods and supplements you need. An RD or RDN can help create a meal plan based around what nutrients your body most needs to stay healthy and keep your lungs functioning at their best. RDs and RDNs can help manage cystic fibrosis-related diseases, such as diabetes (how the body breaks down food) and osteoporosis (bone health) by what is in your diet.1,2
Questions to ask a dietician/nutritionist:
- What foods will help me gain/maintain a healthy weight to support my lungs?
- What should a daily meal plan look like for me?
A social worker helps manage the particular stressors that impact your life due to CF. A social worker can offer help navigating insurance claims and financial concerns. A social worker can also help with making decisions about and accessing resources for school or work. Having certain accommodations in place can help you perform your best and reduce stress. Social workers offer support with the emotional and social struggles of living with CF.1,2
Questions to ask a social worker:
- How do I protect myself legally at school/work from repercussions for missing time due to a CF flare?
- I need help affording my treatments. What options are available to me?
A respiratory therapist (RT) helps to monitor your lungs and provides instruction for breathing techniques, clearing mucus, and how to use your inhalers or other prescribed treatments. An RT can give advice on the care and cleaning of any breathing equipment you may have.1,2
Questions to ask a respiratory therapist:
- How do I use an inhaler?
- I need help with clearing mucus from my lungs. What do you recommend for me?
Other potential CF care team members
A physical therapist (PT) may be on a CF care team to develop an exercise program to help you manage your physical health. Exercise strengthens the heart, lungs, and other muscles - all of which help your body to function as well as possible. The PT will take into account your age, health, and what you enjoy doing!1,2
Your pulmonologist may refer you to a psychologist to help address any emotional or behavioral challenges you are experiencing, such as depression, anxiety, or stress. A psychologist can help you develop tools for managing your mental health living with CF.1,2
Your pharmacist can help you understand the medications you have been prescribed and alert you to potential side effects or interactions with other medications. A pharmacist also ensures you have been prescribed the dosage that is right for you.1,2
A doctor who specializes in the ears, nose, and throat and may be consulted for particular flare-ups.1,2
A doctor who specializes in hormone imbalances and may be consulted particularly in regard to CF-related diabetes.1,2
Who is part of your CF care team?
Did we miss anyone? Let us know in the comments below!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?