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, terminal blood disorder fighter, and 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. AL is very similar to Multiple Myeloma, the second cousin to Leukemia. Due to the damage done to my heart by AL I required a heart transplant on October 8, 2018.
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.
Down and Dirty Details
I was diagnosed with Immunoglobulin Light Chain Amyloidosis (AL) on October 28, 2014 at Mayo Clinic in Rochester, Minnesota. I was sent home with a treatment plan and my Oncologist/Hematologist administered the CyBorD treatment. This treatment is a combination of cyclophosphamide, bortezomib, and dexamethasone. After doing four, four week rounds (16 weeks) of CyBorD I received high dose Melphalan then had an autologous stem cell transplant on April 13, 2015 at the Colorado Blood Cancer Institute.
I started being worked up for a heart transplant in July of 2016 by the heart and lung transplant department at Mayo Clinic. On August 7, 2017 I was listed as a Status 2 for heart transplant. I was on the Status 2 list for about a year when I decided to look for a new transplant center that would be a little more proactive with my heart failure.
September 10, 2018 I had my first appointment for evaluation at the University of Utah. By my third day in Utah the transplant team there asked me to give them 90 days to find me a heart and wanted me in the hospital immediately to be listed at a Status 1A. On September 24, 2018 I checked into the University of Utah hospital CVICU and spent only 14 days waiting until I was offered a heart. October 8, 2018 I received a heart from a precious donor. I can’t express in words how sincerely thankful I am to the selfless 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.