There are certain risks that everyone takes where their lungs are concerned. As someone who has alpha-1 antitrypsin deficiency (AATD), I have more risks than most. Interestingly enough, though, smoking was not the cause of my lung function decline.
There are many both internal and external risk factors, such as allele types, that are known to make it more likely that a person develops lung disease. Some levels of risk are higher. To be sure, smoking raises the risk significantly, but why did I have such issues without smoking?
I had the SZ phenotype and that gave me a moderately elevated risk for lung disease. The other phenotype that raises the risk level is PiZZ, which I (thankfully) don’t have. I didn’t know I had asthma, as I didn’t know the symptoms and no one else ever said anything in my childhood about my symptoms or how they might be related.
Some say uncontrolled asthma can directly or indirectly lead to chronic obstructive pulmonary disease (COPD). I was around wood-burning fires about as much or more than most kids. As a child, we did yearly camping trips and lots of campfires in between those times, but all that stopped when I graduated college.
Dr. M, my pulmonologist, told me to not diffuse essential oils. I know that some oils have caused problems for me so I do avoid those for now. It was hard but I eventually found the strength to part with the oils I had liked.
Read more about therapies for AATD
Probably one of the most obvious risk factors is COVID-19, but even “simple” common colds can cause a chemical process in an alpha-1 patient that damages the lungs by proteolytic enzymes. I never had COVID, to my knowledge. But I have had many colds and viruses that have probably contributed to the health issues I am battling—and I am only 34, which doesn’t seem right.
For much of my life, I believed the lie that AATD would never cause me any issues unless I smoked. I spent several years cleaning as a second, part-time job. I used cleaners such as bleach, ammonia, and others. I also used hairspray sometimes, which contains not only aerosol but other chemicals that can cause inflammation.
While I knew these things made it harder to breathe, I didn’t realize how poorly controlled this asthma issue had become. I didn’t use my inhaler a lot since I had good pulmonary function test results in the past. I thought I could just “push through it” and boy was I wrong.
I learned the harder the body had to work to get oxygen, the more inflamed my airways could become. Now I pay attention because other people can’t tell me when to use my inhaler, only I can. I have my inhaler with me at all times and I use it at any sign of an asthma attack because I know how valuable it is.
There is also the weather. My oxygen level declines during humid weather. Humidity always seems to cause problems for me and I sometimes dread taking a shower when I am having a bad week for that reason.
Another issue that can cause a problem for an alpha-1 patient is dust. I remember a coworker stirring up a lot of dust one night at work and before I knew it my coworkers were telling me to go home because I felt so out of breath. I am learning to avoid this, too, by dusting often and letting others have the cleaning duties.
For others, the list may look completely different, but these were the stressors that could have contributed to why I lost 30 percent of my lung function in the past year and a half. Dr. M prescribed Glassia® and I have been on it for a month and I am feeling good, at this point. I prefer knowing that I am avoiding danger by avoiding certain environmental toxins and getting help in other ways.
The Glassia augmentation therapy helps control inflammation in my lungs. I am so grateful for this drug. The side effects are minor and I always look forward to infusion day because I know it will make me feel good physically and mentally.
I know I am doing the best I can for myself and my future family. I am aware that I caught this early, as I am one of the youngest receiving therapy in my state.