The management of chronic fibrosing ILD with progressive phenotype through immunosuppressants and oxygen is examined as well as the effect on lifestyle.
The management of chronic fibrosing ILD with progressive phenotype through immunosuppressants and oxygen is examined, as well as the effect on lifestyle.
Dawn Repola: Initially, when I was looking for a diagnosis, I was put on antibiotics, and when that didn’t resolve, we found out that I had pulmonary emboli. Nobody gave me an inhaler, so I didn’t have a lot of other treatments other than the 1 I’m on now. That’s because there haven’t been any other treatments until this year for my disease. You had to figure out what you had before they put you on standard of care, which is primarily immunosuppressants and oxygen. The other thing I have to do is I have to manage reflux, which is important because that triggers cough and also may trigger worsening of my disease, but that’s it. I don’t have a lot of treatment options that I had to cycle through.
Since 2018 when I started on immunosuppressants, my lung function stabilized. Then I participated in a clinical trial for 1 of the antifibrotic medications and made a lot of lifestyle changes. The last time that I had a pulmonary function test showed some improvement, which was great news, and that’s probably because the inflammation that was in my lungs because of the exacerbation has reduced. But I’m very cautious now about what I do, where I go, whom I do it with, and what type of stress I put my body under.
I was hard-charging before, doing more endurance athletic events, and I’ve gotten away from doing that type of stuff. What really impacted me was actually the mental health effects of the disease. I’m an entrepreneur, and I founded 4 companies. For two of them I served as CEO [chief executive officer]. I really had this self-image of me as a very strong, healthy, independent woman who was able to do what she wanted to do, and I had pretty lofty goals for life in work and outside work. CHP [chronic hypersensitivity pneumonitis] stopped me in my tracks.
I went from having that self-image of a strong and healthy independent woman to being sick, weak, and dependent on my husband and oxygen to get me through my day. That loss of self was a huge deal. It was pretty traumatic. All of a sudden, I was dealing with things I had never even thought about much, in terms of anxiety and depression and having to reinvent myself and rethink my life. There were some pretty dark times during that, and there still continue to be some pretty dark times on that journey.