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Polycythemia Vera

Lithonya_
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My mother recently got diagnosed with PV. She has been doing regular phlebotomies, but her symptoms seem to be consistent. She is always tired and has a headache. I am looking to speak to other people who have this, and maybe get some info on how to handle it. I am also very scared. I don't know how to cope with this, I need help. 

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    Hi there my Dad had Polycythaemia for27 years diagnosed at 53 he had venesections (blood removed ) at regular intervals for many years and was treated by a very competent haematology team at our local hospital he passed at 85 after breaking his hip nothing to do with his blood problems it can be monitored for long periods in a lot of cases take care

  • Offline in reply to Violetbeau

    Hello! 
     

    thank you so much for your message, it brings me hope. I wanted to hear a positive story very badly today, and that helped me a LOT. 

  • Offline in reply to Lithonya_

    I have a family member with this and he's had it for 14 years now (he's now 47).  It barely registers with him more often than not. His life hasn't changed one bit during this time.  He was terrified, like anyone would be at the beginning, but when the symptoms appear, he nips into hospital to get blood removed. Then it goes back to him feeling like you or I.

    The beginning tends to be the roughest until they get all the numbers under control, then there will come a time where your mother hopefully lives a near normal life.

  • Offline in reply to ProfBaw

    Hi Profbaw

    Lithonya  I'm glad my message helped I also worked in haematology for several years and knew a lot of people with Polycythaemia including as I said my dad people were treated monitored regularly and lived a normal life just needs to be watched over good luck to your Mum take care

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