here’s the thing

When the words “alpha 1” was first uttered, I couldn’t read enough about it.  I spent hours and hours and hours reading everything I could find.  Once all the hours were combined I had probably literally spend DAYS reading info about it.

Now all these months later and reading a damn thing about it sends me on the edge of a panic attack.  No it doesn’t just send me on the edge.  It pushes me over.

I don’t know why but I am frustrated.  I am frustrated that they don’t know more and I am frustrated that every single case seems to be extremely different and extremely personal to the person who is experiencing symptoms.  Even if you have a bunch of ZZs in the same the family, they can all have vastly different experiences.  Some had issues as children.  Some didn’t.  Some had severe liver damage as children.  Some didn’t.  Some had to get liver transplants as children.  Some didn’t.  Some got sick a lot as children.  Some didn’t.  Some suffered respiratory issues most of their lives.  Some didn’t.  Some have liver issues as adults.  Some don’t.  Some develop COPD in their 30s.  Some not until their 60s or 70s.  It just goes on and on like this… it is literally like no 2 stories are the same!  Sometimes it can make you hopeful and sometimes it feels absolutely devastating, both for the same reasons… because you have no fucking clue what could happen either way.  And then you have the whole…sometimes carriers show up with having certain issues.  Granted it seems much more rare.  And then you have all the conflicted studies about carriers… because a lot of the studies done where they found carriers they were already looking at populations with lung and liver disease so I’ve read a boat load of shit about that and yeah… just overwhelming and confusing.  And then  more stuff like liver damage progression can happen quickly… other places saying it can remain more stable for long periods of time.  WHY DOES NOTHING AGREE WITH EACH OTHER?!

You know what’s really rare?  Liver damage in those afflicted by alpha 1 who aren’t babies/young children or 50-60 year olds.  So I always wonder… why didn’t we get 20 more years of ignorant bliss?  And I know, I know… it doesn’t matter because we didn’t and we never will but it doesn’t mean it isn’t a thought that goes through your head.  Like seriously… you envy people who got to be in the dark longer, even though it probably isn’t even a good thing to envy at all.

I must admit, I get more neurotic about it all as doctor appointments approach.  March 5th is the next one… a day after our 7th wedding anniversary.  This one is especially weighing on me because it includes a CT scan to check the progression of the liver damage as well as screen for cancer… because alpha 1 and liver disease both increase the risk of primary liver cancer.   The good news just never ceases does it?

It just feels like a never ending roller coaster that you can’t get off of.  It essentially is.  Even if we end up (if?  when.) on the transplant road and he is essentially “cured” of Alpha 1 in new liver terms, then there is the roller coaster of being a transplant recipient.  So no, it doesn’t it.  Maybe at some point it gets less steep and dramatic.  I mean, that is the hope.

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