Hi All!
I was diagnosed with Polycythemia Vera in August. I am a Canadian living in Hong Kong but came across this forum when looking for others dealing with Polycythaemia vera (PV). Seemed like such a supportive community of people who would understand what I was going through, so thought I’d say hi!
My diagnosis was a complete shock to me being quite healthy and fairly young…37! I had been suffering from pretty bad headaches for a few weeks but didn’t think anything too much of it. Migraines have been in my life for the past few years so just thought it was stress or work. I decided to get it checked out at the hospital and ended up having an MRI. The doctor called me in the next day and told me that I had a blood clot in my brain. The doctor and I were both shocked. I was immediately admitted to the hospital to deal with the clot and to figure out what was causing it. After many rounds of blood tests, the Haematologist came in to discuss results and this is when I found out my HCT and RBC numbers were super high. As soon as he mentioned this, I was pretty sure I knew what was going on as my mum was diagnosed with Polycythaemia vera (PV) 11 years ago. I never suspected that I would also be going through this.
It’s been a wild couple months filled with many appointments, taking heavy blood thinners to get rid of the clot, and frequent phlebotomies. My HCT has come down significantly and almost within normal range. Current treatment is regular phlebotomies and blood thinners as long as the counts continue in the right direction. I have gone from weekly phlebotomies to now every six weeks. Feels like a bit of a breath of fresh air not having to go back to the hospital every week.
Through all of this, I’m dealing with quite a bit of fatigue and brain fog which has made working somewhat difficult. I used to be a very busy person and always loved to be on the go so it has been difficult to slow down but just don’t have the energy right now that I used to. Running long distance and trail running was how I used to deal with stress but the doctor has asked me to take a break from it until the blood clot fully clears. Hopefully that’s within the next month or two as it really does bring me joy!
Feel blessed to have a supportive family, two young kids who bring lots of laughter and joy amidst this, and a mum I can talk to who understands what I’m going through.
Anyways, look forward to getting to know more of you as we go on this journey together!