Want to know what this is all about? Well…
I was born in 1972 (you do the math), I’m the mother of three sons, a wife, daughter, sister, aunt, mother in-law, friend, crazy animal lover, Jesus lover, cancer fighter, and hopefully soon…a heart transplant recipient.
I have Immunoglobulin Light Chain Amyloidosis (AL), aka, Primary Amyloidosis with heart involvement that has officially been in remission since April 13, 2015. Because of my AL, I need a heart transplant. The blood disorder I have, which is very similar to Multiple Myeloma, the second cousin to Leukemia, has damaged my heart to the extent that I need a new one.
Honestly this weblog is simply a chronicle of this very bizarre journey I’ve been on since January of 2012. Being diagnosed, the treatment that followed, the process one has to go through to get on a heart transplant list, and the emotions that tag along with it.
Sometimes it’s kind of funny, sometimes it’s sad, and sometimes it can get really scary. Not just for me but for my family and friends around me. This weblog is a sort of like therapy for me to purge some of the thoughts in my head and maybe in the process of doing that someone else in a similar situation might not feel as alone with their feelings as I’ve felt.
October 2017 Update
As of August 7, 2017 I am listed Status 2 for heart transplantation…The listing system as well as how hearts are allocated will be changing in 2018 so my status should change for the better. I’m hoping a heart will become available in 2018!
October 8, 2018 Update
In the early hours of Monday, October 8, 2018, I received the gift of life from a guardian angel and was blessed with a new heart. I spent 427 days waiting for a heart, 413 of those days as a Status 2, and 14 days as a Status 1A. I received my heart at the University of Utah, and can’t express in words the level of care I received there and continue to receive. My road to recovery hasn’t been easy, but I’m healing and getting better every day! I pray for my donor and her family daily and ask God to help them with their loss. I’m hoping some time soon I’ll be able to write to them and express my sincere thanks for the selflessness of the young woman who chose to donate her heart to someone who so desperately needed it. I only hope I can make her proud of me and be a good steward of the gift she gave me.