For some of us, these are hard times, or at least we have been through some hard times. As a rare disease patient, I have had to wade through fears and depression, and I have many unanswered questions. While that is serious, I have found there is a steady stream of hope for the person with alpha-1 antitrypsin deficiency (AATD) who looks for it.
Before you decide I am really just a positive person, please know I am the first person to give up in a lot of areas (ask my friends!). But I have been challenged to fight for the right treatment or let it play out, possibly into a kind of slow and agonizing death. I’ve realized, as a person with responsibility, that my choices matter.
In my story, that’s the way it is, and it’s really the same for everyone. I’ll give you the quick story of my experience with AATD: In my 20s, I learned the asthmatic tendencies I never grew out of as a child were linked to this condition.
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Later on, in my 30s, my lung function began declining quickly despite never smoking. My doctor gave me a working diagnosis of emphysema and started me on infusions. After a year, I got a full-time job and the insurance that came with it would not cover them (Medicaid had been covering them).
Read more about HCP resources for AATD
As you may know, these infusions are not cheap. We’re talking $1,000 doses. And I need them for the rest of my life to slow down the destruction of my lungs.
I really appreciated that I happened to have been on them when I got COVID. I felt very unwell, and COVID could have really put my lungs through the wringer even more than it did. But because I had regular infusions, the damage done was minimal.
I like the job I have right now. And I am at the point where, because of my income, I may not be eligible for Medicaid if I dropped my insurance. You see, after multiple attempts, my doctor and I exhausted our appeals to the insurance company.
Really, thanks to many calls to and from my doctor, the pharmacy, and the company that makes the infusion, I can see a lot of ways this could work out. I have options, including a personal appeal, moving to a different type of insurance, and/or making sure I don’t earn enough to be ineligible for Medicaid.
Despite how depressing it sounds, I have support from friends and family and my support group for AATD. I know that I have to be my own advocate and I will be supported while I do what I need to do.
That’s the hard part, though: choosing to believe there is hope. It may not always look the way I want it to, but some things are worth setting aside. It’s about realizing what is worth settling for and what is worth fighting for, you know?
Read more about AATD prognosis
It’s about self-preservation and personal responsibility. We believe we are worth fighting for, right?
Not everyone believes that, but I think we have to remember why we are important. We are important because we are loved. That’s what makes us significant, no matter how someone has tried to make us feel.
You know, sometimes for the sake of time in getting the right information or explaining something complicated about treatment, listening doesn’t happen. But you’re in a great position to make that person feel important for the 5 to 10 minutes they have with you.
No pressure, right? It’s not all about you. I can’t complain because all of the ups and downs with God have helped me feel significant. It’s so nice to have that support. Without God, hope is elusive. I remember the term, “It takes a village to raise a child,” and the same idea applies here. A patient with a rare disease leans heavily on family or caregivers and their healthcare team.
Counselors can encourage healthy choices, too. I have one and they are worth every penny of the cost to me. My counseling sessions aren’t covered by insurance. If I’m alive, I can choose to be thankful for the life I have. That is a skill in and of itself. I have failed at that, often, I have to say. But the days I chose to start out thankful for the good that I have in my life, I have really and truly enjoyed.
