Many doctors have come to understand cleaning chemicals affect certain persons in negative ways. I know I was supposed to avoid chemicals and use my inhaler as needed at the time of my diagnosis as an alpha1 antitrypsin deficiency (AATD) patient. I just wish this was re-emphasized from the beginning of my treatment journey because it would have made the next 10 years a lot smoother.

For me, AATD affects my lungs (it varies for different patients). This condition makes my lungs vulnerable because they lack a protein (alpha-1 antitrypsin) that acts as a built-in airway protector. If a person has this deficiency and has asthma, knowing how to initiate appropriate changes in daily life can be difficult.

I was diagnosed early because of my brother’s diagnosis leading to mine. I flip-flopped between being scared and being very much in denial. No one else really knew about this condition, but I knew it could become very serious.

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It seems to the outsider like this would be a no-brainer. I knew to use my inhaler as directed, since I have asthma, and to keep away from smoke and not to be around harmful chemicals. It made sense until I realized all of my home cleaning products include what might be a harmful product, and I often didn’t know I needed my inhaler until it was too late.

Part of the problem was that I overreacted and never really got back to a healthy knowledge of my lung risk. I had the PiSZ genotype. Some with PiSZ never develop any problems and I didn’t realize how many PiSZ’s really do get sick until I joined an online support group a few months ago.

Another problem was that most of what I heard from medical professionals was “if you don’t smoke or do drugs or drink, you’ll be fine.” Whether they said this or not is not the point; this was the message I got. I don’t remember anyone telling me I even had a moderate risk of developing emphysema until my early 30s.

At first, I used my inhalers and avoided the chemicals I could, but because I was in college, I couldn’t control my environment 100% of the time. So gradually, I relaxed more and more around bleach and other things that had previously caused me concern. I began to think it was all “in my head.” 

About 8 years later, I learned that failing to use an inhaler at the right times can result in “uncontrolled asthma” and this can almost be disabling in and of itself. Inhalers are great if you know when and how to use them. I wish someone had told me about uncontrolled asthma.

Read more about therapies for AATD

When I was about 29, I had my own cleaning business. Therefore, I was around a lot of cleaning products. The people I worked for had no knowledge about my condition; I kept my mouth shut because,  I thought, “It’s no big deal,” and I wanted to keep my business.

According to the pulmonary function test results, I seemed stable, so I kept working. I often worked with bleach and one day I was mopping the floors with it and went outside to clean some massive windows. I had a sudden asthma attack. Thankfully I had a friend with me. She helped me back to my apartment. I used my asthma inhaler several times. It helped a little, but the rest of the afternoon I spent at home. 

I wish I had known better. I am sure bleach and window cleaner was not the first thing on my doctor’s mind to inform me about, rather it was about alcohol and smoking.

Admittedly, I have used chemicals to clean since then if needed, but never in my own home. After getting word my lung function declined for unknown reasons last year, I stopped cleaning with anything but “safe” things like vinegar, and I keep dust and bleach as far away from me as possible.

Those are 2 of my biggest sensitivities, but I have learned many things and I have supportive family and friends, and a supportive doctor. I know how to handle what I have and I will be ready to support my own family if I ever have children of my own. Having the right people in my life is the best part of it all, and my own character is growing, too.