There are several things I would have done differently after my alpha1-antitrypsin deficiency (AATD) diagnosis. I did have a great doctor, but there were certain things I wish I had realized were so important.

I once heard someone else with AATD say: “Nothing about respiratory illness is straightforward.” While this is true, so much can be avoided by being proactive. These ideas may not help everyone, but there are things I can share that may help others.

There are standard precautions that I can take. These include not smoking, avoiding secondhand smoke, and breathing in chemicals. 

Continue Reading

Although some people with alpha-1 can get COPD even without this risk factor, smoking is the “number one risk factor for lung disease in those born with Alpha1,” according to the Alpha1 Foundation of Ireland.

I did not smoke or was I around second-hand smoke, and still had problems. There are other things to stay away from, such as chemicals and dust. These are things that I was aware of but never took seriously until now.

I learned to clear my home of small trinkets, so I can dust regularly and easily. I used fewer chemicals in my laundry detergent and relied on vinegar to clean other things in my home instead of bleach. I have a harder time with bleach than a healthy person would.

According to my pulmonologist, diffusing essential oils was potentially as harmful as breathing chemicals, and advised me to stop. I had noticed that diffusing even something like lavender could be hard on my lungs, so I didn’t argue with him.

My AATD Diagnosis Took Years, and So Did Learning How to Live With the Disease

I had noticed, and others agreed, humidity is dangerous for me. I have reduced ability to exercise and breathe when it is humid outside. I even have to limit time in the shower lately.

As I said, these are things that are known to cause irritation for those with AATD, but “nothing in respiratory illness is straightforward.” I have found that a certain herb, mullein, really helps me breathe.  However, it really irritates my throat at the same time, when taken as a tea. 

One thing I found that really helps me is magnesium (not for everyone). Magnesium has lessened the number of asthma attacks and muscle cramps I have drastically. It helps with anxiety, too. The benefit I have received from magnesium is a clue that something is definitely wrong.

There are other things, such as cooking gases and radon, that may affect a person with AATD not to mention allergies. I struggle with allergies a lot. I also have asthma. That doesn’t mix well with allergies. It creates problems with exercise tolerance and being able to enjoy fresh air, as well as a host of other things.

And lastly, I have learned about the power of respiratory illness. I did not realize how many of these infections and conditions I have had in comparison to others in my age group. I think, at times, if I had known this, I may have been more careful in how much I exposed myself to over the years.

What I learned is that the more respiratory infections I have, the more likely I am to have lung damage. I also learned this can cause COPD after enough lung damage has occurred.

I am much more serious about my health now that I have seen an unexpected, downward trend in my lung health. While neither my doctor nor I know the exact cause, I have learned what helps and what doesn’t, and how much.

For instance, now I only exercise as much as I can. Most days, that means 10-20 minutes at a time. And often, I can only exercise 20 minutes a day or less.

It is a well-known fact that lung function, once it is lost, cannot be regained. I think it’s a great motivation for spreading awareness for this condition. 

The reason I am more serious about my health is not something I gained by using fewer chemicals or more mullein tea. I don’t fight to feel better. I am fighting for what strength I have left.

While this is sobering, I also realize I can use more of what lung function I have to reach my goals and enjoy life more fully. In a previous article, I wrote how thankful I am for modern medicine. It’s true. Everything makes more sense and I know what I am fighting for now!