Finding the Right CF Care Team

By now, you’re probably in charge of some of your prescribed treatment. Pretty soon, you’ll be in charge of all of it! That means you have to keep track of all of your medications and keeping track of doctor visits. You may decide to go to your appointments alone or with a partner.

It can be overwhelming at first, so start with one thing at a time. You might even work with your pediatric CF Care Team and your new adult CF Care Team at the same time, just to make sure you get the help you need. Your family’s support will help you, too.

Below are some questions to consider asking your CF Care Team doctor, respiratory therapist, nurse, social worker, or nutritionist. You can also download a Caregiver Discussion Guide to bring to your next appointment.

Questions for your doctor

How frequently should my pulmonary function be tested to understand if my condition is progressing?
Are there certain activities I should be avoiding at this time?
Are there additional activities I should consider integrating into my prescribed treatment plan?
How might standard therapies improve my lung function?

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Questions for your respiratory therapist

Can we review the airway clearance techniques that I am currently doing?
Are there additional airway clearance techniques that I can do on my own to help manage CF?
Should I continue to see you even if I am not feeling sick?
I know I should exercise, but it’s hard to find the time. What’s a quick, effective routine I can do?

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Questions for your nurse

Why is it important to take my therapies even when I feel good?
What should I do when I am feeling sick or too tired?
What are some of the things you would recommend regarding treatment administration?
How can I contact you when I need to?

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Questions for your social worker

Since we last spoke, are there additional support groups or services available for me regarding CF?
Do you have any tips to help me talk to others in my life about CF?

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