Maintaining Your Care

YOU ARE THE CENTER OF YOUR TREATMENT. While your doctors, nurses, and other care providers will help you manage your disease, you are your most important advocate. People who take an active role in their own care do better over time. Here are a few steps you can take to make sure you maximize your care:

Speak up for yourself. If you have any concerns with your treatment or do not understand something about your disease, talk to your care providers. They want to make sure that you are able to maintain your health and will help you with these issues.

Be prepared for your visits. Ensure that you are able to see your care providers regularly. Have a list of any questions or concerns.

Ask questions of your care providers. This goes along in communicating with your providers and being prepared. You cannot help in the decision making process if you do not understand the factors involved.

Take notes. You will likely get a lot of information during your health care visits and this can be overwhelming. Do not be afraid to take notes to help you remember important treatment issues later on.

Let your family and friends help. Emotional support is as important as other treatments. You can bring people who support you to your health appointments. Additionally, maintaining your health is a lot easier if you have support. This is especially true if you are trying to modify your lifestyle. Quitting smoking, exercising more, or changing your diet is difficult; let those who care about you help you accomplish your goals.

Contact advocacy and support groups. Reach out to community or national groups that help people with PF. It can be very useful to find out how other people manage their disease. They may give you invaluable tips or tools that make it easier for you to manage your disease. You can also pass your tips on to others and help support the community.

Stay informed. Keep learning about PF. The more you know, the better you will be able to manage your disease and recognize when you need to access health services. Be warned that there is misinformation on the internet; make sure you access reliable sources of information, such as advocacy groups and respected scientific and medical sources.



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Updated April 2013
This information has been approved by Gregory P. Cosgrove, MD (September 2012)