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Polycythaemia Vera rare blood disorder just diagnosed

Shaundolly
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Hi I have just been diagnosed with Pv after numerous test as I have too many red blood cells . Got to have a bone marrow biopsy to confirm . 

As anybody ever had this and also a bone marrow biopsy as dr google is driving me mad reviewing bone marrow biopsy as most people having horrendous pain etc .  

I was just looking for somebody who has had this condition as I see it’s rsre and what life expectancy quality of life is etc as I’m freaking out . 

  • Hi Shaundolly, 

    I saw you haven't had a reply yet so I've had a look through the forum and found that [@Chris1969]‍ is in the same position as yourself, as you'll see from this post they made a few weeks ago.

    Hopefully Chris will pop by here for a chat but you're more than welcome to reply to him on his discussion as well.

    We have some information on our website about PV just here if you'd like to take a look but do feel free to give our cancer nurses a call if you'd like to talk things through with them. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    Wishing you all the best with your bone marrow biopsy.

    Kind regards, 

    Steph, Cancer Chat Moderator

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    Hi, I have been having venesections done now for 3 weeks and back to hospital on the 7th Oct to talk with specialist about my pv. I think they are going to do the bone marrow biopsy then. I heard lots of people say it hurts but a nurse at the hospital said if you have a good person do it it should be fine. Fingers crossed. I will find out how far mine has progressed soon. Don't google to much it sounds bad on there. If you do what they say and look after yourself hopefully we will live for a while yet. They can manage this. I will let you know how it goes. 

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