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One day I was visiting my pulmonologist and hadn’t been feeling well. I had a yearly checkup with him for alpha-1 antitrypsin deficiency (AATD). At these check-ups, he usually does a series of tests, including a 6-minute walk test (6MWT) to assess if there are any changes in my condition. And now I can say that I am so glad he did the 6MWT because I knew I needed help.

After all, maybe he could help me be able to work enough to get back on my feet. When they did a 6MWT, the results showed I had some issues with maintaining oxygen levels while I did mild exercise, but went back to normal when I was sitting still.

I was having a hard time with energy and sleep, so I figured I probably had some sort of sleep apnea. I hadn’t known AATD to give me much trouble except asthma and didn’t expect it to because I didn’t smoke. However, that was all about to change, thanks to these tests I had been asked to take.

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Originally, I was unable to work enough to have insurance anymore and didn’t want to pay any bills I didn’t have to. But my doctor’s office made phone calls and sent letters to me encouraging me to come in. 

Read more about therapies for AATD

The results confirmed the source of my problems. I have an inherited form of asthma and perhaps something more related to the protein deficiency I inherited. Neither of my parents had the actual deficiency but they both had one gene that made them “carriers.” I ended up with the condition. And I have the genotype, PiSZ. 

This meant my lungs could be affected by the deficiency, even though some people with the same genotype are not affected at all. When the doctor assessed my pulmonary function test (PFT) and 6MWT, I agreed to do weekly augmentation therapy which has helped me feel much better. 

I am having fewer asthma attacks and I am now able to handle exercise with more ease. If I hadn’t done this and other tests, the normal oxygen levels while sitting might have made it seem like I suffered from something else.

I found out I didn’t have sleep apnea, and I can finally say with proof that I’m not actually imagining things and that I truly can’t do the exercise I used to because of a lung function decline. Can I say I am surprised by it being related to AATD? No, but this test has been so helpful.

Now I pay more careful attention to when my body tells me it’s time to sit down or stop working so hard. Also, not everyone responds with changes in symptoms in the same way, but I find I am less breathless when going upstairs. 

I don’t think it’s just “all in my head” because the last time I had a 6MWT, my oxygen saturation levels were much better. And the pain in my chest has lessened since I began augmentation therapy, too.

I didn’t realize it hurt so much to breathe, but I have mentioned in some earlier columns that I have had several chest infections that damaged my lungs to the point of it affecting several things. So I haven’t seen a total change in my condition, but I am grateful for the changes I do see.

And I am grateful for a good pulmonologist. His staff definitely pushed me to come in for evaluations, even though I had not shown signs on any test of having problems with AATD in prior years. The only reason I got diagnosed in the first place was because my brother was diagnosed and I knew it was genetic. Looking back I can see the symptoms, but at the time I didn’t realize them like that.

Would I recommend the 6MWT to someone with AATD? My answer is, absolutely, yes! Oxygen levels are important and show why some people might feel dizzy when walking, as I did.

Now I can exercise for up to about 20 minutes per day. Any more than this is too much and I end up with a whole lot of downtime off work because I can’t function. It’s definitely been something I deal with every day, and now my coworkers and supervisor can see more clearly what is going on.