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Everyone has a different experience with COVID, but mine was pretty rough and it took a long time for me to be able to go back to work. I probably went back to work too soon, but I went mostly for the sake of my mental health. Having alpha-1 antitrypsin deficiency (AATD) didn’t help me as I tried to recover from COVID.

Even though I get regular infusions for AATD, I still have trouble breathing at times and that has never gone away. Since I had COVID, though, even less than 10 minutes of exercise sets off symptoms for me that don’t go away.

I do plan to discuss this with my pulmonologist at my upcoming appointment. I know COVID is not something that is predictable. But I wasn’t prepared for what happened during the “Omicron Season,” as I call it, or late August of 2022.

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In short, the level of fatigue and length of illness was much more than normal. But sadly, from what I hear, it is fairly common for it to cause so many issues if one is at high risk for it. And I have 1 or 2 of those risk factors.

I missed 1 of those infusions during that time because I was throwing up the day it was scheduled. But I was sure to be ready for the next one. I’m glad I had that to fall back on.

Strangely enough, I don’t cough all the time anymore. Some weeks I have a nagging cough that sounds terrible. It’s hard to distinguish if it’s leftovers from COVID or just this lung condition reacting to different things. I am sure the turn of the air from humid to dry very quickly had something to do with my current lung condition. But I have never had so many breathing issues as I do now.

I enjoy exercise. It is invigorating, energizing, and many other things, I sleep better and I am in a better mood when I have had a good amount of exercise. But, some days my body treats it like it’s an allergen. It doesn’t take long before I end up sitting down and using my rescue inhaler. And sometimes that doesn’t work.

Thankfully, I am taking corticosteroids to keep the asthma attacks down a little. That helps with prevention, anyway. But, I am still trying unsuccessfully to get a workout routine that doesn’t leave me in a bad spot for the next 24-48 hours.

There are other bright spots. Sometimes I have a really good day when I am able to do more than usual. For instance, today I helped someone shortly with some household chores.

I had no breathing issues doing that today, but that’s not the norm and tomorrow may be a completely different story. Life is very much a guessing game for us AATD patients.

It wasn’t until I was talking with my brother about my struggles with exercise that I nailed it down when it started. I just suddenly realized it started about a month or so after I got COVID. It’s almost like I never really recovered.

I went back to work about 3 months ago, I look forward to better days in the future. But I don’t know what I would have done without my inhalers. Thanks to them, I can have my job, and I can relate to other AATD patients who have the same story. Not everyone does, many AATD patients report they felt like COVID was just like a bad cold or the flu.

I wish I understood COVID more. While we still are finding out new information, it’s nice to have medical workers who care enough to help someone like me feel better emotionally. I remember calling a nurse line at one point and crying. I couldn’t understand why I wasn’t getting better after a whole week. She kindly reminded me not to compare my story to anyone else’s.

I really appreciate her down-to-earth advice and not treating this like a predictable illness. Now that I (hopefully) know better, I am not so hard on myself about it. However, it’s still difficult to find the energy to do what I think I need to do. We all do, really, but I believe life will be so much better if we don’t see COVID as a monster we can’t beat.