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I mentioned in an earlier column that I hate humidity. Many people with alpha-1 antitrypsin deficiency (AATD) would agree they need some sort of support during humid days. There is just something about those days that makes everything so much harder to do, and, at this point, augmentation therapy is not making humidity any easier.

I live in the Midwestern United States. That means our summers and hot and humid, and for me, miserable. While I am sure the places closer to the Equator may be worse than where we are to some degree, I just can’t get with the usual hype about summer like others around me.

Being extremely sensitive in many ways, and with a lung condition that has worsened with age, when the temperature changes and it rains, often the humidity level changes how I feel physically. I often wonder if a person with AATD needs more oxygen than others during times like these.

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I like heat. I usually feel cold and would rather be in the warmth of the sun than freezing inside. But this heat comes with a downside: it feels like it could quite possibly smother me.

There are many things about my physical condition that have declined quickly over the past couple of years and one of them is my ability to get enough air during humid seasons. I often feel like I need extra oxygen on humid days. It’s almost unbearable. One time recently I got out of the shower I looked down to see purple nails and purple toes, too.

It’s pretty scary to feel like you’re locked in your body. No one but you really knows what it’s like and most will never be able to understand if they wanted to. But I am offering a glimpse into what it’s like for someone with AATD.

Read more about experimental therapies for AATD

Walking outside on a humid day to me feels like someone came up behind me and threw a comforter over my head and tightened their grip. My lungs are trying, I am drawing breath, but I notice that I am starting to panic so that isn’t helping things either. 

Immediately I feel like I need to sit down. I probably have made my point, but just for the sake of being dramatic, I can’t seem to get the comforter off me and the only option to keep myself from suffering an asthma attack is to turn around and go back inside. 

I miss out on whatever activities are going on outside because a little bit of what’s outside is inside my home, too, and it’s exhausting. Since I also have other health issues (as many with AATD also do), it also affects my joints and my head, as well as my sinuses. 

If only there was a solution to this problem of humidity. I wish I could say I have learned, after all these years, how to deal with it. I think the best advice to give anyone is probably to drink plenty of water, make sure to get plenty of electrolytes, and keep a rescue inhaler around at all times.

I have thought about moving to an arid climate from my residence in Branson, Missouri, but there is much more dust there than we have here, which I also can’t handle. So, unfortunately, there are not a lot of options for me to be comfortable. I wish I could go out and play basketball with my boyfriend or go swimming and play tennis (tennis is my favorite, though I am putting that on hold until a nice day comes along).

If I am learning anything through this, it is that I have to sometimes be OK with not having a plan to do what I need to do. I just need to let things go. There is a saying that goes “if you don’t like the weather today, don’t worry . . . it will probably change tomorrow.”