Progressive Chronic Fibrosing ILD: Patient's Perspective

Patient Dawn Repola shares her experience of receiving a diagnosis of chronic fibrosing interstitial lung disease with progressive phenotype.

Transcript

Neil B. Minkoff, MD: Before we discuss the economic ramifications of disease, let’s ask Ms Repola to come back. Talk to us about your reaction when you got diagnosed and what you were concerned about and how it’s been impacting your daily life.

Dawn Repola: With the initial diagnosis from the first pulmonologist, because they were the blood clots, I didn’t listen to the fibrosing ILD [interstitial lung disease]. He didn’t give me that diagnosis. He said we have to watch this. And 5 years later I had pneumonia and another CT scan done. He looked at that and then compared it and he said there’s progression here and we need to refer you to an ILD clinic. He referred me to the local hospital, which has a really well-respected ILD team. At that time my new pulmonologist was really careful. He described the ILD as an umbrella disease. There were a lot of different categories. There were some that he could eliminate right away. Then there was a whole battery of tests that we could go through, including a lung biopsy. Ultimately I was diagnosed in 2014 with chronic hypersensitivity pneumonitis. At that point, I trusted him. I had a lot of experience with him, I had seen him several times, and I’d seen other doctors in that clinic. It was a multidisciplinary team. I saw the rheumatologists. We had an environmental person come in and evaluate the house and look for mold. I have to say, though, that because there was very little information available on ILD at the time, I didn’t take it very seriously. Which is 1 of my great regrets. I didn’t see a big impact until after the lung biopsy when I went on oxygen and when he gave me the diagnosis. Then he put me on a standard-of-care suppressive therapy. He said, “You know, you need to be careful.” I’m embarrassed to admit that I just didn’t listen to him. I just didn’t take it very seriously. The thing that bothered me the most was being on the oxygen. Because that’s external, and all of a sudden you’re carrying around a tank and people notice that. It was kind of embarrassing. Then some of the other things, that it really slowed me down in terms of what I could do physically and I had always been really active. All of a sudden it was like, “Oh, you’re not going to be running any more half-marathons.” Let’s set some different goals. Then there were adverse effects from the medications, and they were unpleasant. Honestly, I didn’t really take my diagnosis seriously until I had an exacerbation. At that point he just sat me down and looked at me, looked at my husband, and said you have got to start taking this seriously. He said, “I don’t want to lose you.” That scared both of us. And we went, “OK, big life changes coming.” That’s when we really took it seriously.