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Despite how long I knew I had alpha-1 antitrypsin deficiency (AATD), I am just now coming to realize how much it affects my sleep. For some reason, I just assumed discussions about sleep problems were to be done with my general practitioner, not my pulmonologist. This year, I gained more control over my breathing at night and that was life-changing.

I have struggled with sleep at different times, usually, if I had a stressful situation at hand or during college. Then, at age 33, even though I consider myself to be pretty calm and level-headed, I noticed it just didn’t come easy anymore. I really needed a breakthrough.

I don’t remember exactly when it started, but one day I noticed lying flat made my lungs feel like they were either made of metal or too relaxed to work for me. That was very problematic for me. Eventually, I started waking up choking or snoring, or breathless while sleeping flat on my back.

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I got the sleep apnea test, which was negative. In the second test, my doctor told me I didn’t have sleep apnea, but a different disorder that caused problems with breathing during sleep that didn’t lower my oxygen levels. 

Read about experimental therapies for AATD

At that time I did my yearly pulmonary function test (PFT), which confirmed an abnormal decline in lung function, and I eventually got an inhaler to help me sleep. I learned some breathing techniques that relaxed my lungs and my brain and the rest of my body. I like the way my system works for me. My favorite is a pretty well-known exercise, I just breathe in through my nose for 4 seconds and out through pursed lips for eight. This technique has helped when I have occasional issues sleeping. Because of all that, I wake up much more refreshed in the morning.

I have, of course, come to realize that my lung function may decline despite having augmentation therapy weekly. I have other illnesses so my health is pretty delicate. This makes having a good night’s rest all the more important for me.

Talking to a counselor has helped, also. Because of my counselor, I have come to find that a good night’s sleep results in a good day, which, hopefully, turns into another good night. I have to admit, it’s a great cycle to be in.

I also do use sleeping pills when necessary, especially during stressful times of life when this cycle is being threatened with feelings of being overwhelmed. It happens to everyone from time to time so it’s important for me to not get stuck in a sleepless rut again.

Even though I still can’t lie flat without coughing, I don’t have to deal with as much anxiety and depression when I didn’t know what was happening. Now I know and I have the tools to make changes and prolong my quality of life.

The depression and anxiety I have experienced have mostly disappeared as I have learned to be healthier and speak up about what’s bothering me. There are so many facets of life that AATD impacts, so I have learned to be more honest about what physical problems are bothering me. I heard someone say once that a major cause of depression is not expressing one’s feelings.

I don’t know if that’s true in every situation (Of course, I could go overboard and get really emotional during certain times and situations), but verbalizing or expressing really helped me. Having a rare condition has been helpful in teaching me some of the values of being honest in general. For example, I have a couple of conditions that cause chronic pain. To be able to rest and sleep well and be focused on everyday life, I had to learn to manage that pain. I have to know when to push through and when to stop and when to take medicine.

I have to remember that those types of issues affect breathing, also. Managing pain like this has also helped make for a better night’s sleep. 

It seems like everyone with AATD that I have met has a blend of symptoms and everyone needs to find treatment and help that works for them. For me, a lot of my sleeping issues just happened to be related to my lungs. And life is better now.