Good News for Alpha's

 A lot of people will see the headlines and think it's a great thing that another treatment has been found, and perhaps speculate on the pharmaceutical financial motivations for creating another drug. But for anyone with Alpha 1 Antitrypsin Deficiency, this is BIG news!  I, and others like me, have suffered greatly from the effects of a mutated gene.  For me it meant lung function decline, cirrhosis, kidney failure, heart failure and encephalopathy.  I was one of the lucky ones.  I got a new liver.  Although the process was long, grueling and filled with hurdles, I made it to the other side. Many don't.  AATD steals years from mothers, fathers, grandparents, siblings. To us, this news is HUGE!

Saint Louis University and Industry Partners Discover Treatment for Rare, Genetic Liver Disease

I'm looking forward to the day when no one has to go through what I've gone through the past 15 years of my life.  I was sick throughout my late 30's and my 40's.  This year I celebrated 50 and am feeling better than I imagined I could ever feel again. I'm beyond grateful!  But... I hope none of my children or grandchildren have to experience what I have, so yeah! for a treatment/cure.

 

2020

2022

Almost two years post-transplant and thankful for every new day!

Heart Talk

This morning I was reading the first Chapter of Ecclesiastes and verse 16 caught my attention.

16. I communed with my own heart, saying Lo, I am come to great estate and have gotten more wisdom than all they that have been before me in Jerusalem: yea, my heart had great experience of wisdom and knowledge.

 Do you ever have "heart talks?"  I have these moments of reflection when I can reach way down inside of me and discover truths that had previously lain buried and undiscovered - to me, anyway.  Maybe it is insight into my own emotions, a sudden understanding of an event, or perhaps clarity about an objective.  What I've noticed is that these moments of revelation and clarity seem to happen more profoundly after an internal struggle of sorts.   

I remember as a young girl praying for wisdom.  Solomon was one of my Bible heroes.  I studied the Proverbs regularly and sought to make wise decisions in life.  In my naivety, I believed that if I all made all of the right choices and did all of the right things I would save myself from the pain fools experience.  In one of my "heart talks" after a series of major heartbreaks in my 30's, I extracted from my inner most being the realization that you can make all of the right choices, do all of the right things and have your life come tumbling down because of someone else's bad decisions and foolishness.  The truth is that life is painful; there is no escape from pain - no matter how wise you are.

Another "heart talk" in my 40's (a decade later) brought me to the liberating discovery that other people's mistreatment of me really had nothing to do with me.  I suddenly understood that their anger or hurtful actions toward me were only symptoms of their internal struggle and not a reflective reaction toward me at all.  This moment of revelation gave me the freedom to see past my own emotions and really see the perpetrator of my pain.  While, yes, it freed me from assuming the responsibility of their rejection and aggression, it saddened me to realize how much of human suffering stems from other human suffering.

I don't want to mislead you into thinking that all of my "heart talks" are negative, but the older and "wiser" I get, the I better understand why the wise man went on to say in verse 18:

For in much wisdom is much grief; and he that increaseth knowledge increaseth sorrow.

The more I learn about life and the world around me, the more I see the underlying impact that sin brought into this world:  suffering, pain and death.