On Friday, I had the opportunity to interview a man helping to find answers for how Alpha-1 damages the liver. He is Dr. Jeff Teckman, and I've gotten to know him as an acquaintance through my volunteer work with the Alpha-1 Association and Alpha-1 Foundation. It was an enlightening experience in that I got to better understand how the true process of research happens, but then I had a realization.
Research takes years and years of trial and error. Successes are often fleeting or just out of reach. In talking to Dr. Teckman, I learned about in vitro research, which is based on cells grown in a petry dish. I also learned about in vivo research, which uses animals or humans. His latest publication was based on a well known assumption that the build-up of the Alpha-1 Z protein in the liver cells causes damage. He took that theory, which was proven with in vitro research and applied it to a mouse-based model. The mice in his study displayed that Alpha-1 liver cell damage is very heterogeneous. Some liver cells display damage, and some don't. Why this happens to some cells and not to others is still in question. Dr. Teckman and other Alpha-1 researchers are working hard to figure out the reasons.
My realization often comes in the form of small spurts of inner panic.
Panic for what might happen.
Panic for what will happen.
Panic for what I can not control.
After all, I want to do my job as Grace and Meghan's mommy. My job in life is to protect them from harm. Alpha-1 is the big, bad monster from which I can't protect them. It may harm them. It may not harm them.
I have to have faith. That is a hard thing to acknowledge sometimes. I have good days where Alpha-1 doesn't get a moment's thought, and other days, I immerse myself in a sort of quest for more knowledge of Alpha-1.
The interview with Dr. Teckman was both exciting for its reveal of possibilities, and a let down in that the elusive cure is not coming soon enough.
Until then, I pray and help to guide the girls into their lives including, but not limited, to Alpha-1.
When I receive Dr. Teckman's approval of my story, I'll post it here.
3 comments:
Goodness Jen, I really felt for you reading this. Those small bursts of panic... Sets my heart racing just thinking about it. I know it's such a dangerous place for me to go with my girl. One of those places you where you really can't afford to live, but can't help visiting now and then. Every so often I walk right up to the edge, take a good long look all the way down and then slowly begin making myself back right back up.
I'm just in tears thinking of what you're feeling... What I feel. Feeling like you should be able to make everything all right, because you're the mom and that's what moms do... Feeling like you're a failure when you know you can't do anything but watch and wait and pray.
I don't have anything magical or profound to say except that I understand what you're feeling. And I care. And I mingle my tears with your own. You are SUCH a good mom to your girls and I feel so very privileged to have gotten to know you.
Michelle-thanks so much for your validation. It really does help to know that someone understands, and I'm also priviledged to have gotten to know you in cyberspace too. I profoundly thank you for your understanding.
Jen
Jen, I feel your concerns, worries and stress. I too have 2 children with Alpha-1. 2 boys, ages 5 yrs old and 10 weeks. Both have the severe form ZZ. Both are pretty healthy getting flu shots and blood levels measured every 3 to 6 months. My email is jtown10088@aol.com if you have any further questions about Alpha-1.
-John
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