I’m strong in many areas. I can manage stressful situations well and I can be very patient. I can get to the bottom of things if I want to. But I have been waiting for insurance to approve augmentation therapy for my alpha-1 antitrypsin deficiency (AATD) for about 3 months. And my patience is wearing thin.
I dealt with a very difficult case of COVID-19 this year, had more breathing issues than ever, and used to get infusions to preserve my lungs. I changed insurance companies because I got a full-time job. That insurance company denied my claim.
However, previously my pulmonologist saw good reason to believe I had the beginnings of emphysema. Being under 35 years old, I knew I was getting the best therapy for me and that was a good feeling; it made me feel safer.
According to my pulmonologist’s office, this type of thing happens only rarely. Almost a year ago, I asked about this possibility before it even became a problem. The office workers were confused that I would ask such a question.
In my case, my pulmonologist is making an appeal, which involved my getting my blood drawn. However, the appeals process has dragged out to nearly 3 months. It really baffles me, not knowing why it has taken so long.
Read about therapies for AATD
What makes it worse is that I saw on the denial letter the reason for the denial. I did not have the PiZZ genotype. I can’t imagine what my doctor is going to have to say to change someone’s mind about a thing like that. The PiZZ genotype is one of the most researched gene types. However, there are other genotypes that can have increased risk for this as well. That includes mine; it’s just a step down from PiZZ, PiSZ.
In the meantime, I have had sinus infections and more breathing issues than normal. My body had to overcome a lot when I got COVID-19, which was one of the lingering problems. Anxiety breathes down my neck at times.
But I’m also looking on the bright side. I don’t have to have an obnoxious needle stuck in my veins every week right now. I don’t have to block out a significant amount of time when I would normally have an infusion.
Now that I have more time, I am also taking care to be on top of doing as much exercise as I can physically. There are some routines I can do throughout the day that can be beneficial. Breathing exercises, getting fresh air while I walk, and using my bike are things I enjoy and benefit from on a regular basis.
Another cool thing is that my infusion pharmacy has a person who calls me periodically. She is on the appeals team and lets me know about any updates on the appeals process. She seems like a caring person who wants to make sure I get the treatment.
It feels like I have a friend who is rooting for me, so I appreciate that. I am able to see the caring side of the infusion pharmacy through these challenging months of waiting. On a spiritual level, as my patience wears away, I see myself as less in control. It has forced me to stop and rethink things. I slow myself down intentionally, as things seem so out of whack.
I pray a lot more and can see things from a better perspective. It’s more apparent that my doctor’s office really has been working on this, but they have boundaries, too. What I think would be great is that my doctor would call me up one day and say, “Oh sorry Alyssa, but the test results we used to determine you need infusions are incorrect. We confused them with another patient’s.”
Not that I think my doctor’s office would do that, but it would be nice to know I don’t actually need them. I never imagined I would need infusions for the rest of my life. I didn’t even want to imagine that kind of thing.
At the very least, my veins are happy. Maybe they will be a little easier on the nurse next time. One can hope, anyway.