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.
Read about complications AATD patients face
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.