Meet David, Living with IPF

There’s nothing more important to me than being there for friends and family. In fact, for the past 33 years, I’ve gotten together every single Tuesday night for dinner with “the boys.” I met them all when I moved to a new city where I didn’t know anybody. There, I met one friend from work. Then I met three other people through him.

Together, we’re the five originals, and the group has grown. The five originals, we’re very close. We’ll fly out to whatever city to see births and marriages in their families. If anything comes up, we stick together. We do everything together. Then, I was diagnosed with idiopathic pulmonary fibrosis (IPF).

One day, on my usual jog, it hurt to breathe so much I thought I was having a heart attack. When a pulmonologist told my daughter and me that scar tissue forming in my lungs was the cause and that I had IPF, I stared at him and said, “You’re kidding me.”

I never thought that the pain had to do with breathing. When somebody tells you that you have something wrong that you’ve never heard of, it’s even more scary. The doctor told us about the disease and that once lung function is lost, it cannot be regained. After that, I was frightened.

My relationship with my friends changed when I told them about my diagnosis, which really bothered me. They started acting extra nice because they thought they wouldn’t see me again. Different friends were constantly coming over to me saying, “I’m sorry you’re going through this. We’re with you to the end.” For a while, I almost started dreading Tuesday dinners with the boys because I was constantly being reminded of my disease.

Over the next few weeks, I had regular visits with my pulmonologist, who recommended that I go on oxygen. I was on oxygen for about 17 or 18 hours a day. My daughter came through like a champ because she read everything she could find about IPF—and explained it all to me. My visits to the doctor were maybe 20 minutes, but my daughter was on the phone with the doctor for an hour and a half after each appointment. It meant so much to me that she was able to find out the information and be such a strong support.

I also learned a lot about myself from going to a support group and talking to people about their experiences.

This desire to help others motivates me to keep going, and right now, I’m trying to set up a support group of my own, closer to where I live.

I want to visit with my grandchildren and have Tuesday dinners with the boys for as long as I can. That's what keeps me motivated.

But in order to stay strong and help others, I also need to help myself. When the doctor told me about some options for IPF treatment, I decided I needed to make a commitment to address the disease.

I need to do certain things to help manage my IPF. Today, I do pulmonary rehab using the treadmill and a step device to help strengthen my lungs. I also still use oxygen. My grandkids, my daughter, my wife, and even my friends stay on my case to make sure I take my medication when I’m supposed to, and I’ve found one that works well for me! I still go to Tuesday dinners with the boys, and we still do everything together.

You’ve got to do everything you can to stay strong and find ways to manage IPF.

IPF Patient Alvin holding a sign stating "I'm facing IPF to be my own champion"

IPF ran in Alvin’s family, so the diagnosis wasn’t a surprise to him. Discover what advice he has to share from years of learning about and living with the disease.

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

Armond relied on his family’s support when he was diagnosed with IPF. Learn how he was able to stay positive and take action to manage his life with the disease.

Collage of IPF patients

Hear others with IPF share what they’ve learned about themselves and their disease with the support of their friends and families.