Meet Armond, Living with IPF

 IPF Patient Armond holding a sign stating "Find support. Get educated. Stay positive."

My “grand adventure” with this disease has been a bit different than most of the people in the idiopathic pulmonary fibrosis (IPF) community I’ve met. I managed retirement communities for many years, and I’ve served as a chaplain for a very long time. Managing the woes life throws at us and grief counseling were central parts of my professional life. So, when I received my IPF diagnosis, I was on familiar ground, just facing in a different direction.

When the pulmonologist told me I had IPF, I was a little shaken. I had gone to my primary care doctor for a cough. And here I was, getting this diagnosis. My pulmonologist was straightforward with me. He told me that this disease causes loss of lung function and explained what options I had for treatment, which may work to keep IPF from progressing as quickly.

I knew that I needed to accept the diagnosis and the prognosis, but that's easier said than done

It took me some time to get in touch with all the feelings this diagnosis dragged up. I knew I was anxious. Anxious about the disease, about treatment, about progression, about what would happen to my family; I was anxious about everything. But anxiety wasn’t the only feeling I experienced. I was sad, angry, depressed. You name it, I felt it.

Thanks to my wife, Mary, I turned the corner. She helped me see what my attitude was doing to those around me. When I saw her reacting to my anxiety, I knew I needed to accept my IPF. I needed to start thinking and being more positive.

Through work, I've seen over and over again how the people who surround themselves with positive people and positive attitudes do better. I've seen it in my own life as well.

When I’m accepting of what’s going on, my wife and kids can accept whatever it is too. We all know that misery begets misery. But it works the other way around too. If you’re positive and hopeful, then the people around you will feed off your positivity. Soon, they’re giving you positive and hopeful feelings.

One of the things I needed to do to become positive and stay positive was to get more educated about my disease and what I can do about it. My pulmonologist gave me some information, but your doctor isn’t your only source of information. The person I see at my pulmonary rehabilitation sessions has given me great information. I’ve attended webinars about IPF to keep up on the latest research about it.

Even other people with IPF have helped me learn more about my IPF. Knowing more lets me be the positive force that I want to be.

Mary and I both attend IPF support group meetings whenever we can. At the meetings, the group discusses everything about IPF, from pulmonary rehab to oxygen tanks and condensers, from the latest research to tips and tricks to manage everyday tasks. I can’t tell you how much I’ve learned thanks to people at the support group. We truly support each other by bringing what we know to the table.

More recently, Mary and I have moved into a retirement community. We started discussing it as an option shortly after I was diagnosed. I would have access to medical professionals and support services that just weren’t possible with us living at home. When we were deciding, I didn’t want to push Mary. We decided it was the right time, together.

Some of the things I'm focused on doing are eating better, exercising more, and living the fullest life I can.

I know the first two are things that everyone talks about doing. Even I talked about them for years. But now that I know about my IPF, I have a better motivation for getting out there and doing it.

I am very involved in walking exercises. I still do the breathing exercises that I learned at pulmonary rehab. With the blessing of my doctor, my trainer pushes me, in a good way, to stay on top of the things I can manage.

As for living life to the fullest, I’m doing what I can when I can. I want to be out front in the IPF community, helping out. I want people to know that this disease, this diagnosis, can be managed. There are things you can do to help yourself. You can learn more. You can work with your doctor. You can treat your whole body rather than just treating your lungs.

If you remember nothing else from me, I hope you learn these three things. Find support. Get educated. Stay positive.

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.

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.

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.