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PA-IPF Registry home  

The Daniel and Joan Beren
Pennsylvania Idiopathic Pulmonary Fibrosis
State Registry

A project of the University of Pittsburgh, University of Pennsylvania, Penn State Milton S. Hershey Medical Center, Temple University, Geisinger Medical System

PA-IPF Hotline  1-866-922-4IPF (4473)


Risk factors for IPF
Diagnostic test for IPF
I've been diagnosed with IPF, now what?
What if I need oxygen?
Exercise and IPF
Find a support group
How will IPF affect my diet?
I'm afraid of death, what can I do?
Will my children get IPF?

I'm afraid of death - what can I do?

This is one of the most difficult questions you will face.

As medical science progresses, and treatments become more effective, people are living longer, more normal lives with IPF. However, since there is no cure for IPF, premature death is a fact of life. How you approach this is in large part based on how you live your life, what you believe, and how you think about your future. Many IPF patients make the conscious decision to live their life as normally as possible in spite of their illness.

One woman has an old saying by her grandmother posted on her refrigerator. It reads, "You have it, don't let it get you." She goes on to explain, "I have close friends and family and faith in God, and have so many things to be thankful for. I feel like I've been blessed. IPF is something that is a part of me, but I just try to live my normal life. The main thing that keeps me going is my faith in God."

While religion and faith can be great comfort, others seek solace in family and friends, or in their careers. One man explains, "I always had a focus of what I wanted to do in the future. I knew once I was well exactly what I wanted. I knew I wanted a career, a wife, a child, and I got them." He also tried to find laughter where he could. "I watched tons of comedies on video every day. It kept my spirits up." Finally, he embraced the possibility of dying, and found it to be liberating. "I needed to embrace it. I didn't fear it. In the understanding of one's own mortality, the greatest amount of beauty is found in every object one sees. By embracing death, you are enhancing life. Trying to hide from the possibility of death would have been the end of me. A person who is ill can become so much more than they were by embracing the finality of life. If you make it through, you are so much better for it."

As terrible as it can be, IPF does not have to rule your life. Whatever you are going through physically and psychologically, you can still take joy in family and friends, seek laughter and love, make plans for the future, and live every day to the fullest.