Hello there @Watts, welcome to the forum! I’m really sorry to read of your diagnosis, I know that feeling well. I was also diagnosed with Polycythaemia vera (PV) last year at a similar age and also likely had symptoms for years. In my case, I had a heart attack many years ago despite being healthy and active.
Like you describe so well, it’s pretty shocking, right?! I’m glad you have your background in healthcare to help with understanding the treatments and reasoning behind them. It’s great too that you have a supportive husband and were able to be referred to a haematologist once your symptoms were noted. If your shock is anything like mine, it may feel a bit like grief for your former self. I hope it passes swiftly.
Because I was considered at high risk for clotting events, despite being a “young survivor”, I was put on daily hydroxyurea, continued daily aspirin, and had fortnightly phlebotomy which is now occasional, usually every other month. I’ve heard good things about interferon and I’m sure other Myeloproliferative neoplasms (MPN) survivors here will share their experiences of it.
I attended a blood cancer conference earlier this year and you might be interested in the notes I took relating to MPNs such as Polycythaemia vera (PV).
Just wanted to send a big warm welcome and say that although we have these weird rare blood cancers there are plenty of us here to support you in living with Polycythaemia vera (PV).
Do please let us know how you’re doing.