July 9 2018

Kim Barkov Kim Barkov's BMT Survival

First post: Sep 27, 2018 Latest post: Jul 3, 2020
In 2013 I was diagnosed with a bone marrow disorder, a benign form of Leukemia called "Polycythemia (PV)".  I remained relatively stable for 4 years.

In 2017 I learned my bone marrow showed signs of transforming to Myelofibrosis "MF", when the AXL1 mutation was found in addition to JAK2.  Within one year my PV became aggressive (bringing on cardio & pulmonary issues) and in August 2018 I was given the MF prognosis  that included a shortened life expectancy (< 4 years). 

Since the only cure for MF is an SCT/BMT Stem Cell/Bone Marrow Transplant, I began this process in May 2019 at the Seattle Cancer Care Alliance (SCCA)/Fred Hutchinson. Note: This occurred  after terminating Mayo Clinic/Phoenix for abandonment,  incompetence and delayed treatment and 2 failed attempts to transplant during Dec 2018 from a so-called "team approach" that was non-existent.

May 10th, 2019 is considered Day-0, when my perfectly matched donor stem cells  were infused through my port into my body.  My transplant experience remains uneventful, with no nausea or pain, except for acute skin GVHD that has resolved, along with a lot of muscle weakness and a bit of chemo brain which will resolve over time. 

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