Meet Nancy, Living with IPF

IPF Patient Nancy holding a sign stating "I told my husband that we're going to be okay. I still believe that."

In May of 2013, on the day I was diagnosed with idiopathic pulmonary fibrosis (IPF), my husband Bob suffered a heart attack. There was a moment, while waiting for the EMTs to arrive, that it was just the two of us. I hadn’t told him yet about my diagnosis, and it was weighing heavily on me when I finally gave him the news. I can remember taking his hand in mine and telling him quietly, “We are going to be okay.” I believed that. A year later, he was diagnosed with Parkinson’s disease. Now I was his caregiver, and he, mine.

It has been a challenging journey. And yet, here we are, both just over 80 years old and still so very grateful to be together.

What helped the most when I was diagnosed with IPF was knowing—to an extent—what to expect and what steps to take. Within the first month, I connected with a support group, gave and received practical advice, and took advantage of educational opportunities that would put me on the right path.

What made the biggest difference, though, is the relationship I have with my doctor.

We have very open communication. When I was diagnosed, he was honest with me and explained that, eventually, my lung function would begin to decline. We talked about a variety of management options such as supplemental oxygen, pulmonary rehab, and medications that may help keep IPF from progressing as quickly. We continue to work on developing a plan that is best for me. I hardly ever walk into my appointments with him without a list of questions. In fact, he blocks out more time just for me—to hear me out, answer my questions, and give me the necessary tools to be my own health advocate.

Being a person with IPF, as well as a caregiver to my husband, I have to pace myself and recognize my limits.

What I get done, I have to do in bits and pieces. Otherwise, there is no energy left for me to use by the end of the day. But I’ve come to appreciate leaning on the realities of the diagnosis—if for no other reason than to avoid slipping into denial. To be sure, I know the realities. I know the statistics.

But, for me, that is not what living with a rare disease is about. It's about living the best I can each day.

With IPF, I’m going to have both good days and bad days. On my bad days, when the shortness of breath is difficult to manage, I take it easy, resting whenever needed. That way, on my good days, I can enjoy the company of family and friends and do a little housework—maybe even make it to a seated yoga class.

It really doesn’t take a whole lot to make me happy. Sometimes, it is just having fresh flower bouquets in every room of my house. Other times, it’s remembering that I owe so much of where both Bob and I are today to my family, my friends, my faith, and my doctor. Between our children, our church community, and the teen boys in our neighborhood who take out our garbage and mow the lawn, we feel so well cared for.

I have been truly blessed to know people who have, by example, taught me how to live a fulfilling life. Despite the future. Despite the fears. Despite the diagnosis.

To this day, I’ve yet to believe otherwise.

 IPF Patient Armond holding a sign stating "I'm facing IPF to help others"

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.

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 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.