Newly Diagnosed with Pulmonary Fibrosis

If you have been newly diagnosed with pulmonary fibrosis, you may have a lot of questions. 

The steps below can help you better understand and manage your diagnosis. 

Step 1: Find a Specialist

Pulmonary fibrosis (PF) is a condition that means scarring of the lungs—called fibrosis. The scarring causes your lungs to become stiff, making it harder to breathe. Not every healthcare provider specializes in diagnosing, managing and treating PF. It is important to find a healthcare provider or pulmonologist with expertise in treating pulmonary fibrosis.

Step 2: Follow your treatment plan

Take your medications as prescribed and discuss any side effects with your healthcare provider. Along with medications, part of your treatment plan may include using supplemental oxygen. Use a pulse-oximeter to help monitor your oxygen levels at home and when you go out. Talk to your healthcare provider about other treatment options like clinical trials, a lung transplant evaluation, or pulmonary rehabilitation.

Step 3: Understand how to manage your PF

Living well with PF includes managing symptoms, staying up to date with your vaccinations, and navigating life with PF. It is also important to eat the right foods to help you stay healthy and active. Other ways to manage your PF are taking care of your emotional health, monitoring your stress levels and planning for the future.

Step 4: Monitor for signs of progression

PF is a progressive lung disease, meaning it will get worse over time. Not everyone will have the same rate of progression. Some people with PF may progress more quickly while others may decline at a slower pace. An acute exacerbation is a sudden worsening of symptoms, making it harder to breathe and may require immediate medical attention or hospitalization.

Step 5: Find support

Join an online support community or an in-person support group. This will make you feel less alone and connect with people who can give you tips for living well with PF.

Resources:

• Lung Health Navigators (education and support program)
• What is a pulmonary fibrosis navigator? (animation) 
• Learning to Live with Pulmonary Fibrosis workbook (English) (Spanish)