I am living with pulmonary fibrosis

After the initial shock of a pulmonary fibrosis diagnosis goes away, you might be wondering, what now?

Step 1:

Make quality of life a priority. Consult with your doctor and registered dietitian about what you should be eating. Be active every day, even if it is just a walk to get the mail. Use your oxygen as prescribed.

Step 2:

Manage any symptoms and side effects from the disease and your medications. Some patients find themselves struggling to manage side effects such as coughing, diarrhea and fatigue. Ask your doctor for a referral to a palliative care specialist. Palliative care teams focus on helping the patient manage their side effects and maintain a good quality of life.

Step 3:

Address your stress. Living with lung disease can bring up many emotions and thoughts, some you may not have experienced before. You don’t have to face this disease alone. Connect with support, talk to a therapist and tell your doctor how you are feeling. There are ways to ease the emotional burden that comes with pulmonary fibrosis.

Step 4:

Prepare for the future. No one wants to think about what might happen down the road but the best time to make plans for the future is right now. Fill out an advance directive and make a will. Have conversations with your family and your care team about what you want your life to look like in the future and your end-of-life wishes. Having the conversation early helps reduce everyone’s stress.

For more information, visit the pulmonary fibrosis patients section and read the Living with PF FAQ.