Tap Into Existing Resources
Every member of your CF health care team — from social workers to nurse coordinators to respiratory therapists — should know about available resources in your community. Turn to them for phone numbers, websites and expert references that have worked best for other CF patients.
- Share online health information with your CF health care team. Many websites, like PubMed from the National Institutes of Health (NIH), offer articles on the latest medical research, complete with ideas for new treatments. Be sure to talk to your CF team members about what you learn and get their opinion about these options.
- Follow the paper trail. Keep copies of any forms you need CF providers to sign and/or fax in case they get lost. Always give a deadline and be polite — but persistent — if you need to follow up. Finally, don’t hesitate to get a second opinion if a CF health care team member refuses to sign a form.
- Recruit others to your CF health care team. Ask about other hospital staff who might help you. Financial counselors or patient advocates, for example, can offer a unique perspective. Check out Patient Relations or Guest Services at your hospital to see what they can offer.
- Make sure you have a two-way relationship. Your pediatric CF health care team probably took care of more things for you than what your adult CF health care team does. They will not do everything for you, but rather point you in the right direction so you can solve problems on your own. Some adults with CF get frustrated, saying things like, “They didn’t call me back. They must not care.” The truth is, the only one who is in charge is YOU. Try not to judge your providers, but realize that they may be teaching you to be self-reliant. Watch the Partnering with Your Center for CF Care webcast series to learn more.
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