Once I knew I had alpha-1 antitrypsin deficiency (AATD), my mind filled with questions. What is this condition really like? Once I began suffering from it, I wondered how much more I would suffer moving forward and how I would manage the pain and other symptoms.
Recently, I learned there are some things even my doctor doesn’t know. For instance, I would love to know if essential oils are bad for someone with lung issues. I have breathing issues when certain essential oils are diffused into the air. My pulmonologist says there is just no evidence of essential oils in the air affecting the lungs. He recommends, though, I don’t use them at all. So I gave my diffusers away, and some oils, too.
However, since we don’t know for sure, and there are a host of allergens in my area, I had to let some go. It’s a boundary I had to set, no matter how good they smelled.
Another question I’ve asked is, “What will life be like when I’m 70 years old?” I mean, given that I’ve had asthma for a long time, will I make it to 70? I’d like to grow older than 80, but as life is unpredictable, the decision is not entirely up to me.
Read more about AATD differential diagnosis
At 80 years old, life may be very difficult. I’d imagine if I had to suddenly stop getting infusions, I may very well need oxygen by then. My condition is so unpredictable sometimes, I could need oxygen next year.
I feel confident for now because things are going better than they have been for a while. I’ve had some effective treatments this year, and so far, my body has responded pretty well to weekly infusions. Of course, some people say it’s all in my head, but if it is, I am happy for a great break.
The truth is, augmentation therapy doesn’t normally give very high pulmonary function test scores, but at least mine aren’t declining so much. That’s a really good sign that life may go easier for me as a result. But the doctor has never given me a clear idea of how long I will live.
Because I’ve never smoked, my chances of living longer are higher, and many people with AATD live a long time, so I don’t really worry. It’s not something I have a lot of control over anyway. I can control how lethal my environment is, but my lungs are a whole other story.
Since I can be a control freak about my health, I do try to be careful. I want to know what is really going on in my body. Little by little, my doctor and I are finding out what’s happening in my lungs. I wonder how my lungs came to be so damaged when I always heard that if I didn’t smoke, I would live a long and healthy life.
I don’t remember who told me that myth. It could have been the internet. But lots of people who have never smoked and have AATD have lung issues. I know this because I have spoken with many of them in my support group. A lot of us had fairly healthy beginnings but now suffer from fatigue and lung issues.
Read more about experimental therapies for AATD
Why is this? My doctor hasn’t got a clue. He asked me lots of questions to make sure he understood but he couldn’t find a logical reason why my lungs were in bad shape other than AATD.
Recently, I asked the physician assistant who works with my pulmonologist, “What have I been officially diagnosed with?” She started with a very lengthy answer, which included AATD, asthma, and emphysema.
I stared at her rather blankly, and responded in the most intelligent way I could: “Oh.” I realized at that moment that it was more than just an open and shut case—I had more than one lung disease. I also realized that what she meant was, “we don’t really know yet.”
Somewhat disappointed as I was, I learned something that day. Answers take a long time to find in life, and they do in the medical world, too. I might as well get used to it.
We all have questions, and I do love a good mystery. I like answering those questions. But being a perfect, “normal” person is not who I was made to be.