What Is the Life Expectancy of Someone with Pulmonary Fibrosis?

No healthcare provider can predict any one person's lifespan with PF. Survival rates that you see for the disease are based on population averages taken over many years. They cannot predict your individual experience. 

Your prognosis with PF will differ depending on factors such as:

• Age
• Health
• Lifestyle
• Type of PF
• Severity of the disease at diagnosis

Patients with pulmonary fibrosis experience disease progression at different rates. Some progress slowly and live with PF for many years, while others decline more quickly. Patients living with IPF tend to have increased progression and worse outcomes than patients diagnosed with other types of PF. 

Because pulmonary fibrosis can be complex and treatment options are continually advancing, it is important to work with a pulmonologist who is experienced in diagnosing and managing interstitial lung diseases (ILDs), including pulmonary fibrosis. A specialist can help ensure you receive an accurate diagnosis, access to the latest treatment options and ongoing monitoring for changes in your condition.

If your symptoms have gotten worse despite treatment, your healthcare provider may evaluate you for signs of progressive pulmonary fibrosis (PPF). PPF occurs when lung scarring continues to worsen over time, which can lead to increasing symptoms, declining lung function and changes in daily activities. Understanding whether your disease is progressing can help you and your provider make informed decisions about treatment and disease management. 

When you are diagnosed with PF, talk with your healthcare provider about how best to take care of yourself. Eating right, exercising and protecting your lungs are important in keeping you as healthy as possible. Supplemental oxygen therapy may assist with staying active and pulmonary rehab can help you build endurance.  

It is also important to discuss if any medications might be appropriate for treating your pulmonary fibrosis or symptoms. Inquire about clinical trials, as they may give you access to new treatments being studied. If you have tried to join a clinical trial but were unable to, you may want to talk to your doctor about expanded access program. 

It is always a good idea to plan and make arrangements for the future. End of life planning can be a challenging conversation but also helps take the burden off of you and your loved ones as your condition progresses. Consider asking for a referral to a counselor, therapist or social worker who can help you through this stressful time.