Newbie with Polycythemia Vera

[Starfire1970]

Finally, a diagnosis! My CBC's have been abnormal for over a year. Any advice on what to expect tomorrow?

[lizk1993]

HI Starfire, I was diagnosed in June this year with Polycythemia Vera. Was told this at first visit to clinic. Consultant asked me about symptoms, had a prod around tummy to check spleen. Took a little bit of time to tell me about condition. Then asked if I would mind having a venesection straight away. Was about 20 mins with consultant and 20 mins getting venesection, and a long, long time waiting around. Was there for about 2 and a half hours. Hope this helps, though I imagine every hospital/clinic will have their own routine. Good luck for tomorrow.

Liz

[Starfire1970 in reply to lizk1993]

Thank you! Kinda relieved and kinda of scared of tomorrow's appointment.

[Mardi in reply to Starfire1970]

I’ve never had venesections as I’m over 60 and they like to start you on hydrea to correct blood counts - mine went down to normal in 3 weeks of starting hydrea and have stayed there for the 4 years since I was dx with PV- I’m 74 and have no problems- everyone is so different to the next person - no one seems to be the same I’ve noticed after reading many posts on PV - good luck.

[Starfire1970 in reply to Mardi]

Thank you for your experience, sounds like you are doing great!

[Kari1961]

Hi Starfire

My experience was much the same as with Liz. Examination, explanation and venesection. I was diagnosed in 2015. They'll also arrange for a follow-up appointment which will be dependent on your HCT level. My appointments were every two weeks for a couple of months... now I go every 8 weeks.

Try not to be scared about the appointment, you'll find it's very straightforward... remember to ask your consultant about anything you're not sure of or worrying about.

Good luck! Kari.

[Starfire1970 in reply to Kari1961]

Thank you! He has me scheduled for a 2 week come back. I did find out I have probably had it for over 8 years prior, I am just blown away with that!

[Kari1961 in reply to Starfire1970]

It's crazy isn't it. I had a stroke in 2012... amazingly PV wasn't looked into at that time. After I was diagnosed in 2015 they looked back over my blood results and came to the conclusion that PV was the cause of my stroke and that they believe I've had it since at least 2009. There definitely needs to be more awareness of PV - especially in respect of some GPs.

[mark382]

Had PV for 9 years with hospital appointment every 3 or 4 months. Venesections depend on blood count, but usually 2 or 3 a year. I always drink a pint of water before my venesections and have never had a problem. Also on low does aspirin. I don't mind the venesections as they make me feel so much better and is from someone who has a fear of needles!!. Still can't look at needle going in or even watch it on the Tele, but would go tomorrow for venesections as I feel much better after. Nothing to worry about. Marc

[Starfire1970 in reply to mark382]

Thank you! You have made me more comfortable with your advice and experience!