Hello, I’m new here and I’ve just received this diagnosis. It was only discovered following a private health check where my haemoglobin was 241 - range should be 115-155, I’m told and my haematocrit was .75 - ideal number is .5. Fast forward to an emergency GP admission to hospital and a 5-night stay with venesections twice a day. I’m currently having v-sections twice weekly alongside aspirin and Elanapril for my sky-high blood pressure. When my haematocrit levels get to .45, I’ll be starting hydroxycarbamide.
The only time I’ve been hospital was to have a baby and I’ve never had to take medication. I’m extremely fortunate to have been seen and treated but feel a bit of a fraud, as I am well. Just goes to show that health is a precious commodity
Hi again FloraVera and good to see you have navigated across to the group. This group covers all the blood cancers that do not fit into the mainstream Lymphoma, Leukaemia and Myeloma groups.
As you have looked at my profile you will see that I don't have Polycythaemia Vera but I was diagnosed way back in 1999 when I was 43 with another rare, incurable type of blood cancer (NHL) reaching Stage 4a in late 2013 so I do know this journey rather well.
In the early days it’s all about understanding the condition and once you get more information and talk with others the journey will get more understandable.
Let's look for the members with this condition to pick up on your post. you can look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any older posts.
You can also put Polycythaemia Vera or PV into the search tool 
near the top, select 'Anywhere' and this will bring up all the older posts and again you can hit reply on any thread and see if the members is still looking in.
Talking to people face to face can help you a lot so do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Hematology Support Groups most are online at the moment….. the one i attend does have a few folks with PV in it so worth checking.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.
You may also want to check out MPN VOICE UK for some good information and have various support platforms.
Always around if you need further help or just want to talk.
