Meet Ellen, Living with IPF

I have always been fascinated by the history of the world, and so has my sister. We love our trips, sharing the view that there’s a lot to see in the world and we’d better get it done while we can.

In August 2013, I was on a walking tour around my home city. We were exploring the beach, when I climbed a few stairs and experienced some shortness of breath. I thought, This is weird. I haven’t had this problem before. It wasn’t intense, but I was still very much aware. So, I went to my general practitioner and we were told that I had idiopathic pulmonary fibrosis (IPF). Well, that wasn’t very nice to hear. It was shocking because I knew nothing about IPF.

I was fortunate that my sister, a retired physician, was very helpful during the early appointments in getting answers to my many questions. She also did some research that I was not up to doing at that point. Having her with me was a wonderful support.

After my diagnosis, I tried to keep my IPF from affecting my plans. I wanted to keep traveling the world with my sister.

I suddenly had much more intense shortness of breath. I went back to the pulmonologist for more tests.

After the results came, I was told that I needed to be on supplemental oxygen and should consider some additional treatment options. As my doctor explained to me, you can’t regain lung function once it is already lost. This news came when I was all set to go on another trip. It was unsettling because I was very concerned thinking that a management plan might not help. What if I got worse?

I tried to focus on relaxing and meeting my life day-to-day, as my sister would say. I realized that I am eager to try maintaining my life as much as possible—I want to work with my doctor to keep doing as much as I can.

I also belong to an organization of writers, and they help keep me going. I have many projects I want to finish. I am hoping to write a book about all my travels.

Because of everything I have going on in my life, my health is my priority. I made a plan with my doctor. Along with my IPF management plan, I do strengthening and balancing exercises at home for 30 minutes a day and walk every day when the weather permits.

I have continued traveling and I’ve learned a lot about what’s required to travel with oxygen. It can be complicated, but if I want to do something, I have to try my best to do it. I couldn’t let IPF hold me back. I set my goal, I made the necessary modifications, I worked with my doctor, and I went for it!

Keep setting goals, keep adjusting, and keep trying—that's my philosophy, and something I hope you can do too.

IPF Patient David holding a sign stating "I'm facing IPF for my commitments"

David found it difficult at first to accept his IPF diagnosis. Discover how he changed his perspective and now works to support others with IPF.

IPF Patient Nancy holding a sign stating "I'm facing IPF to be the best I can be"

Nancy has IPF, but her husband also has health problems. Learn how they help support and care for each other.

IPF Caregiver Bob holding a sign stating "I'm facing IPF for my family"

Bob’s wife, Nancy, has IPF, so he does everything he can to support her. Find out what he does to help her during doctor’s appointments and their day-to-day lives.