Amy and me and Argentina
Amy and me and Argentina
I am doing a “virtual run” for the Amyloidosis Foundation. I recently posted the Introduction to my journal during this run.
It was suggested I share my posting here. So as I start my virtual run, and with gratitude in my heart for those that helped make it possible – I ask you all to continue reading.
THE START OF MY VIRTUAL RUN
There are maybe a handful of people in the world who can say they HAD amyloidosis.
When I was diagnosed with Amyloidosis (ATTRwt) in April 2018 one of my coping mechanisms was to treat it like a “run for my life”.
After receiving the diagnosis in Argentina (a third world country), I had the diagnosis confirmed in the United States. Procedures were different but the diagnosis was the same.
Realizing that my life expectancy was now short, and a new life style was being forced upon me, I changed my email name to chocolatecoma66@… My life expectancy as well as my quality of life had greatly diminished and I wanted everyone to know how I wanted to leave. I wanted and still want my end to be while in a coma from eating too much chocolate – the 66 came from an old TV series in the 60s, Route66.
My virtual run is in Buenos Aires. I am keeping a type of journal and the hope is that some people will want to read about what there is to see in a large city in a third world country. While presenting some of the sights of this beautiful city, information about Amyloidosis as well as my experiences both in the first world and third world in dealing with this disease.
Towards the end of my journey with Amyloidosis I was so weak every little task was an enormous effort. When I was at my final stages I saw a side of many people I had never seen before. People I knew for many years. Knowing that I was defenseless and my life was coming to an end I experienced the kindness and generosity of many as well as the dark side of others who normally go to great lengths hiding their true selves.
People tend to show their true selves to someone who is disabled and expected to die in the near future.
My most recent hospital admission occurred approximately 20 hours after an 11 hour flight from New York City to Buenos Aires. I do not remember the first week of this hospitalization because I went into a coma shortly after entering the hospital.
The admitting doctors told my partner they did not know if I would survive the next few days. After the first week I was out of the crisis and admitted to the Cardiac Care Unit. Shortly after the transfer to the Cardiac Unit I was placed on the transplant waiting list. After waiting about a month in a hospital bed, being monitored very closely, I received the heart transplant.
I can now do this virtual run because of the generous love extended to me by a family I never met. They donated the heart of a loved one, to someone they did not know, while dealing with the sudden death of a loved one. I am the fortunate recipient of selfless act of love.
My hope is that my journey will let others know what many of the people with Amyloidosis are now experiencing and are too weak tell their story.
Amy and me and Argentina – Alfred – USA