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Work with Your CF Team

The folks at your CF care center are a great resource. Use them. Talk to them if you’re struggling with the time it takes to do your treatments. Be honest. You’re not a kid who is going to get in trouble.

Your CF health care team is likely to understand how hard it is to fit it all in as an adult with a full life. They may have suggestions or ways to rearrange your treatment schedule to fit everything in.

Ask them if you could you use a metered-dose inhaler instead of an aerosol inhalation; go for a jog instead of using the vest; or maybe substitute an hour of clarinet or drumming for airway clearance.

Here are some other points to talk about with your CF health care team:

  • Ask them what are the absolute priorities in your medical care. That way, if you do run out of time, you can focus on the most important treatments and your team will know that is what you are doing.

  • Ask if you can get a portable air compressor to use in the car. Also, ask if you can combine doing your aerosols with your chest vest. Be sure you are clear on which medications cannot be mixed together or used in certain devices.

  • Your CF health care team can offer community resources to save your time. If you qualify for a disabled parking placard, ask for the paperwork.

    If you are struggling to make time for health care, this may be a good time to talk to your social worker about working less hours or taking fewer classes or may be even quitting your job or school and going on disability for a while. Focusing on your health is the same as focusing on your future. You can return to school or work when your health stabilizes.

  • If you are feeling unmotivated, lethargic or hopeless, and those feelings are causing you to misuse time or not take the time to do treatments, be honest with your CF health care team. They will most likely be aware of how hard it is to live with CF. Sometimes having a real conversation about your emotional barriers can lead to ideas and help you get the emotional support you need.

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Updated 8/7/13

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.