Hi everyone, I am happy to see that there is a community of people with the same rare condition, as even the GP can seem confused about what it is.
I’m 42 and recently diagnosed with Polycythaemia vera (PV), it explained a lot in regard to my persistent health issues, and it’s a bitter-sweet thing. I am happy to finally know what is wrong with me, but I wasn’t expecting a type of blood cancer. Then again, from what I understand, ‘if you could pick a cancer and had to pick one, Polycythaemia vera (PV) is not so bad as some’.
I’ve been having weekly venesections to get my haematocrit down to 0.45- and I’ve become very anaemic (Ferritin 6 ug/L), they say treatment has been working great so, I feel lucky about that. I am nearly at the haematocrit 0.45 mark (one or two more weeks) and I’ve been told to go to an every 14 day venesection.
Going over some of the posts here, I see some people are on medication, seemingly with some bad side effects. And I was hoping some of you could share some of your experience with me.
If you’re being treated with Venesections, how often do you need to go now? How did it all go for you? How are you about it emotionally?
Is it possible to have treatments beyond every month, or every month and a half? What are your experiences?
Despite my optimism, I am not sure what to expect really. I had plans to go travelling for a long period of time, and I have some ideas on how to do this with Polycythaemia vera (PV). But there isn’t a lot of concrete information out there and neither am I interested in going through Facebook for obvious reasons.
Thank you for reading and I look forward to your responses.