I have written a lot about how to function as a healthy alpha-1 antitrypsin deficiency (AATD) patient. But what I want to discuss now is keeping lung capacity healthy. This involves a lot of exercises and practices that help maintain one’s quality of life.
I want to show that being active and using my lungs is necessary when the weather isn’t great, or I feel tired. I just know exercise makes me generally feel better. It has really made all the difference.
I also want to mention that if an AATD patient has chronic obstructive pulmonary disease (COPD), lost lung capacity may not be regained again. However, the person needs to stop any exposure to cigarette smoke and fumes. That is if the goal is to maintain as much lung function as possible.
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I recently got back from my pulmonologist and my pulmonary lung function test (PFT) showed I was doing well. Because most of my numbers had dropped significantly last time, I was happy to hear that. I had been doing a lot to help myself breathe well.
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Regularly, I take walks until the doctor tells me I can run again, and I often wish I had taken a run when I skip out because of rain. I also hate humidity, heat, and cold weather. So, I’m thankful my apartment has heating and air conditioning.
Often, after getting home from work I just want to sit down and relax. But forgetting about exercise creates a scenario where it’s harder to sleep. I have more anxiety and less energy when I don’t exercise.
Provided my home is clean and mold/allergen free, I am able to walk around. I also often do 10 minutes of walking during my lunch break, 10 minutes at home, and 10 minutes cleaning or cooking. I think of cleaning and cooking as exercise. That way, I keep from doing too much at once.
A while back, I found that if I tried to do more than 20 minutes at a time, I can’t do much at all the next day. That’s not to say it’s the norm for AATD patients, it’s just an idea of what my life happens to be like for me, possibly due to other factors.
I am a lucky AATD patient, in that we caught this early on and I wasn’t exposed to cigarette smoke. So even though I have persistent asthma and possible emphysema, I am doing OK. I still had to learn giving my lungs a workout is OK.
I also do breathing exercises (for example, the popular 4-second inhale, and 8-second exhale routine) that help me breathe easier. I’m not sure, but I think this has helped my lungs feel stronger. It’s all I have done differently since my last PFT.
I have also noticed, however, that sometimes I have to listen to my body as I exercise. If I get thirsty, I probably need to drink some water immediately. If I feel like I am going to vomit, I need to stop and finish later.
Everyone has bad days. Some people have bad days most of the time. All that really means is that there are days when it is not helpful to put extra strain on my body. For instance, if I happen to have the type of migraine that gets worse with physical exertion, I would stop. Migraines are debilitating. I know that from experience. I am never in the mood to be forced to do absolutely nothing for hours. So, sometimes to avoid issues that would lead to a migraine, I just stop it before it starts.
I also have found it helpful to use inhalers. I have learned to pull out my rescue inhaler every time I might feel an asthma attack coming on. That has helped a lot. And this brings me to the importance of drinking water. I drink lots of water because if I don’t, my throat becomes dry and raw. Water also helps to provide extra oxygen if my lungs aren’t processing it very well.
My doctor has me doing infusions, which puts me at ease to know my physician is looking out for me. It sounds like I have emphysema, so I’m ready to accept whatever treatment is available to slow down the progression. It’s great knowing I’m doing all I can.
