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Polycythaemia vera

Wellybobs
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I have recently been diagnosed with PV, I was admitted to hospital with stomach pains which turned out to be extensive Blood clots cause by PV. I am now on warfarin and hydroxycarbamide. I am trying to be positive but it's hard! Will I get my life back?

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    Hi Wellybobs,

    I am waiting to see a haematologist regarding being tested for PV. From what I understand it is a very rare disease, but one which can be kept under control once it has been discovered.

    Wishing you all the best and hopefully you will be able to receive more replies from people who have been diagnosed with the condition.

    Elaine

  • Offline in reply to Elaine61

    Hi Elaine 

    Things are slowly improving but as someone who is usually very active I'm finding it hard ! I joined a PV group on Facebook but to be honest I couldn't believe how much detail they all seemed to know about their condition, you needed a medical degree to understand what they were talking about, or perhaps it was just me being a bit thick! I wanted practical advice not to know everyone else's blood readings. I hope you don't have to wait to long to see a haemotolagist and get some answer soon take care,

    wellybobs x

  • Offline in reply to Wellybobs

    Hi Wellybobs,

    l have found a site which answers lots of questions re polycythemia through The Health Unlocked website called MPN Voice, check it out there is lots of information and the locals are friendly

    Elaine x

    PS I cant stand Facebook

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