Journey to Diagnosis of Progressive Phenotype ILD

Dawn Repola recalls her journey to diagnosis of chronic fibrosing interstitial lung disease with progressive phenotype and relays frustrations along the way.

Transcript:

Dawn Repola: My journey to diagnosis with chronic fibrosing ILD [interstitial lung disease] with progressive phenotype started in late 2008 and 2009, when I was training for a half-marathon and my times just kept getting slower. Even after hiring a coach and training a little harder, I finally hit a 4-mile run 1 morning where I almost passed out. I decided that was the moment where I really needed to see my primary care physician. She did a chest x-ray and thought I had pneumonia, so she put me on a course of antibiotics. It didn’t improve. She put me on another course of antibiotics.

I still didn’t improve, so she referred me to an allergist, and I underwent a full battery of allergy tests. I’m happy to report that I’m allergic to tumbleweed only. Then I finally was referred to a pulmonologist. He ordered a CT [computed tomography] scan and identified 2 things. First, I had blood clots in my lungs, so that was the acute situation and had to be dealt with immediately. The second thing he noticed was that I had a prior insult to the lung and that there was fibrosis. He flagged that, and he said, “You know, we really are going to have to watch that.” We did watch and wait for about 5 years until 2014, when I had a bout of pneumonia for real this time and had another CT scan. I gave that CT scan to my pulmonologist, and he compared the 2. He saw that there was progression from 1 to the next, and he said, “This looks to me like interstitial lung disease.”

He directed, “I’m going to refer you down to our main campus and to the ILD clinic there. I want them to take over your case for now.” That was 5 years, and then in 2014—it took about 6 months once I hit the ILD clinic, which is at a center of excellence—there was a whole battery of tests that I went through. It started off with a meeting with my new pulmonologist, who’s an expert in ILD, and he was really clear. He explained what that was going to look like and what the journey was going look like to the diagnosis. It was in October, late that year, that he diagnosed me with chronic hypersensitivity pneumonitis, or CHP.

The most frustrating part of the diagnosis for me was the time it took, and that’s mostly just because I’m impatient and I thought this was going to be something pretty simple and in a couple of weeks we would have a diagnosis. Once I talked to my new pulmonologist and he explained what that whole diagnostic path needed to look like, I could see that it was going to take a few months to do. I reset my expectations and reset the expectations of everybody around me. Then I was able to just sit back and go, “All right, it’s just going to take however long it’s going to take.”

The other particularly frustrating piece of my diagnosis journey is that we don’t know what my antigen is, and I never know if I’m being continually exposed. That’s a little frustrating. It’s just something I’ve had to learn to live with. It’s like that little unknown that sits out there, and every time I encounter something new, I wonder is this going to cause an exacerbation.

During the time it took me to be diagnosed, what I understand now is that I was losing lung function, that the fibrosis was worsening, and that was going to have a long-term impact on my health. At the time I didn’t really notice it. I was short of breath on occasion. I climbed Mount Evans in Colorado with a couple of girlfriends. I didn’t use oxygen. I didn’t know that I needed to use oxygen, and that was almost a complete disaster. I just want to end it at that. Now that I reflect on it, the other thing that happened to my health during that time was my level of activity became reduced. I was always a very active cyclist and runner. I stopped cycling. I was doing less running and more walking. I looked at other places for exercise.