How it all began!
When discussing my condition, I am often asked how I found out or how was I diagnosed.
Everything started when I was a 20 year old Laboratory Technologist student at N.A.I.T. We were doing manual estimates of our blood counts and I kept getting high numbers of platelets. A normal range is from 140-400 and my sample was 800-900. Next thing I knew, I was off to the Hematologist and found out that I had Essential Thrombocytosis (high platelets). That was the beginning of my MPN (Myeloproliferative Neoplasm) journey.
For many years, there was nothing to do except attend some appointments. I was lucky and did not have any complications. Then when I was 37 y/o, I was undergoing testing for thyroid cancer surgery and they discovered that my MPN had progressed to Polycythemia Vera (PV) which is where my bone marrow produced too many white blood cells (used to fight infections), red blood cells (carries oxygen) and platelets (clotting). What this meant was my blood became too thick and it could cause problems like strokes, heart issues, liver issues, etc. I was put on a medication called Hydroxyurea which is a chemotherapy drug that suppresses the bone marrow. Between that and phlebotomies (similar to when you donate blood but mine was sent to the trash 😞), I was able to keep this stage under control.
In December of 2021, my condition had progressed to Myelofibrosis. This was found after some minor complications from a Basal Cell Carcinoma treatment. With multiple medical conditions, I focused part of my training in Kung Fu on meditation and mindfulness the past few years. I only had a few symptoms, but by being mindful of my body it allowed me to ask the right questions and articulate my concerns to my hematologist. This information was essential in identifying that my condition was changing and further testing was required. The results confirmed in short order that my condition was in fact progressing. The genetic testing that was completed also showed that I had a poor prognosis, high risk stage of Myelofibrosis and was immediately referred to the bone marrow transplant program. This meant that if I did nothing, I had an expected life expectancy of three years and my specialists said that was even optimistic. In the last few months my blasts (immature cells) have increased, another indication that my condition was still progressing. I was accepted to the Bone Marrow Transplant list by the end of December and fortunately, the team found a suitable donor very quickly and I was given an admission date of Mar 22, 2022 with the actual transplant on March 28, 2022.
Things started moving very fast and my family and I were getting a bit overwhelmed trying to keep up with appointments, schedules, and travelling to another city for some appointments all while still processing my situation. But again, the support from everyone and the flexibility and understanding of our employers alleviated a lot of the stress.
Unfortunately, we have had a few bumps in the road, but we will touch on that in the next post.
Comments
Post a Comment