March 2021 diagnosis
My story started in March 2021 when my previous blood test showed mostly red and critical results. I was stunned but not surprised as I had been saying for 1-1/2 years that my levels were going down.
Biopsy, then results MDSEB2 with Trisomy 8 (an extra chromosome).
I was coming up to 73 when diagnosed.
5 months of chemo followed and the last one with Venclaxta which took me into temporary remission.
September 9th 2021 was transplant day, stem cells given to me by a wonderful 24 year old, photo attached.
Three weeks in my room at hospital with my daughter there all the time.
This was during the second bout of Covid (no other visitors allowed).
I think the whole journey impacted by family and friends much more than it did me as I was happy and calm and believed in my nurses and doctors. Not saying it was an easy thing to go through but knew this from the beginning. My daughter knew all about my disease so she took the brunt of it all. I just stayed in my own World believing in everyone (which I think really helped me through my journey).
My transplant started to work after 12 days and I was out of hospital after 21 days. Back in on the next day with a temperature and a few days later diagnosed with fungal pneumonia (which they treated with pills for three months).
There were lots of ups and downs but so far no Graft versus host disease (fingers crossed).
I think the thing that really boosted me was the psychological tests that they give you. I aced four of them and found out that I have a photographic memory. Got a score of 138 (not sure what that meant), but it lifted me a lot.
I had 130 friends and family behind me and their messages, cards and gifts lightened my spirits immensely.
I could go into details a lot more but think this is more about the impact on me, my family and friends. They have never really spoken to me about the impact it made on them but they are sure happy that I am still here to share my story. I met my donor Caitlin this year and spoke to her after a year.
Hope this helps.
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