One day I was talking with my friends and it had been a rough day, it wasn’t even noon. I have alpha-1 antitrypsin deficiency (AATD), which meant I had to sit down in the kitchen while talking with them because I could feel myself getting weaker. I knew I would have to figure out how to explain this to my friends and doctors because it wasn’t going to get better anytime soon. I wondered if the doctors and nurses would believe I needed help, and eventually, I got the help I needed, but it was hard to get.

I knew what was happening; I was having an asthma attack. Truth be told, it was most likely brought on by stress, but I had no idea how to stop the shortness of breath I was experiencing. It was only making the anxiety worse.

Eventually, I had to cancel the later work shift I had been scheduled for that day. I could not stop these asthma attacks. I had asthma attacks before, and normally an inhaler worked, but this was much worse.

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I had to go to the ER because a few hours of stress had become an emergency. I got to the ER and blood tests showed some mildly abnormal results but further testing showed this was nothing serious. By this time I was hyperventilating; to my embarrassment, the doctor had to give me something to calm me down.

Earlier that year, the pulmonologist noted in my chart I had an “insignificant response to bronchodilator.” I already knew I wasn’t responding to my inhaler anymore. So I needed the extra help to calm down.

The nurses kept having to fix the IV because my veins kept blowing. This is normal for me. I am a small person, so my veins are hard to get into, let alone keep stable in my arm.

However, it seemed the doctor was satisfied looking at my blood oxygen saturation levels. He said they were close to 99%. I also knew my blood was pumping, I had been drinking lots of water before coming to the ER and I was hyperventilating, so a good blood oxygen level was no surprise to me.

The problem was, it was still so hard to breathe. COVID had been ruled out, but what could they do about the fact that I had to think so hard about such a basic bodily function? It’s not that I felt they weren’t listening to me or that they didn’t take me seriously. 

Read more about therapies for AATD

But I knew that having uncontrolled asthma can turn into something worse because of AATD. The doctor sent me home and I took a while to recover from the meds that were given to me. Eventually, I got better and the situation that caused me so much stress went away, too.

I did think the doctor thought I was just overly stressed, which was embarrassing. Perhaps he was right. I did wish he had not concluded a good blood oxygen level meant I was OK because I clearly wasn’t.

This doctor did not understand what AATD was and I realized I needed to wear information about my medical condition around my neck so that people could know what might be going on if it happens again. This is what inspired me to make my own medical ID card I can wear every day under my clothes so that my strange “attacks” will be better understood.

I have had panic attacks and I know the difference between those and anxiety attacks, but this was so scary, I wish I had been taken more seriously. I think my local ER is doing better and better at this. I also think people are becoming more aware of AATD, and I really respect those who took the time to research it before meeting with me.

So it has been over 4 months since this happened and I am now taking infusions because of how quickly my lung function had begun to decline. Of course, everyone responds differently to infusions of alpha-1 antitrypsin, but I have fewer asthma attacks and more energy than before.

I am thankful for those at the ER that day and my own doctor, as treatment and knowledge continue to change and get better for those with AATD. I hope this year is my best yet.