Because it’s often how I describe the daily cocktail of medication I take. Morning, afternoon and night I fill the palm of my hand with a variety of pills that do a number of things that keep me alive. Alive? Yes…alive!
My goal is to chronicle my journey through this bizarre disease I have and the subsequent heart transplant I need because of it. What do I have? Immunoglobulin Light Chain Amyloidosis (AL), aka, Primary Amyloidosis with heart involvement.
I was diagnosed October 28, 2014 in Rochester, Minnesota at Mayo Clinic. I received chemotherapy over several months, and a stem cell transplant on April 13, 2015. As of today I have been in remission for almost 7 months. Our hope is that in mid-January of 2017 I will be listed for heart transplant.
Although this journey started in January 2012 with the onset of my first symptoms, today marks the start of my written journey from this point forward.