Precautions of Progressive Phenotype ILD During COVID-19

July 13, 2020

Concerns and precautions for a patient living with chronic fibrosing ILD with progressive phenotype during the coronavirus pandemic.

Concerns and precautions for a patient living with chronic fibrosing ILD with progressive phenotype during the coronavirus pandemic.

Transcript:

Dawn Repola: On my own at home, I have a pulse oximeter that I use whenever I’m feeling like my oxygen might be low. That’s what I do personally, and of course I have my oxygen that I use. For the monitoring that is done for me at the clinic, I go in every 3 months. I have blood monitoring that happens on a monthly basis. I go in every 3 months, and I have pulmonary function tests each time I go in. Every 6 months I have a 6-minute walk test, and I have a high-risk CT [computed tomography] scan once a year. That’s the close look to see if there’s been progression.

COVID-19 [coronavirus disease 2019] for me is scary. Quite frankly, I’m terrified. I think it’s because there’s a lack of information, because this is something we’ve never experienced before, so we don’t have any good information. I tend to err on the side of caution. The precaution I’m taking is I’m a world champion at social distancing. Once I got the lesson around how immunosuppression means that you have to stay away from large crowds and sick people, and cold and flu season means you need to hang out at your home and be careful who you’re around and avoid situations where you might be exposed, social distancing for COVID-19 wasn’t that big of a deal for me.

For my friends who are extroverts, it was a big deal. But I was like, “Yeah, I live on Zoom anyway.” I communicate well outside that, so that wasn’t all that different. The thing that was different was having my husband do all the grocery shopping. I’m the cook, so that means I get some interesting ingredients that I have to deal with. It’s difficult to not be able to just go out to the store if you need to go out to get something. I don’t see that my life is that different in preparing and defending against COVID-19. I’m really looking forward to the time when we have good, reliable testing and good, reliable immunizations for the disease.