NAVIGATING PF
Living With Pulmonary Fibrosis
Your pulmonologist and medical team will help you manage your disease and
symptoms as they change over time. Living with PF means you and your caregivers:
• Must speak for yourself—you play the most vital role in your health care and know your body
best. Don’t be shy. Ask questions and speak up about your experiences and preferences for care.
• Be prepared for doctor visits by keeping careful notes on your treatments, medications, and
symptoms.
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• Allow friends and family to help. PF changes your life and you need all the support you can get.
Consider joining a local support group(s) (such as one listed on the Pulmonary Fibrosis Foundation
website) to understand your diagnosis and find out how others cope with the disease.
What To Expect
PF is a progressive disease that tends to get worse over time. As more scarring
occurs in the lungs, it becomes harder to breathe. However, each patient with PF
has a unique experience of the disease, with different symptoms and courses of
progression. Some patients may have long periods where their disease remains stable
with no change in symptoms. Others may have improved prognosis and improvement
in symptoms if they have a type of PF that responds to treatments. Some patients
experience a sudden worsening of the disease, which is known as an exacerbation
or flare-up. This tends to happen when a triggering event causes a sudden increase
in scarring and may require hospitalization. Unfortunately, the damage done during
an exacerbation is usually permanent. That’s why it is so important for PF patients to
maintain daily activity, exercise, manage their diet and weight, pay attention to other
health issues, and avoid tobacco smoke.
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