Polycythaemia/ Polycythemia Vera

I would really like to talk to anyone who has experience of Polycythaemia Vera, as I am recently diagnosed.

Thanks,

Cam

Parents
  • I’ve been diagnosed with Polycythemia Vera last wk.   I’m terrified and at the moment wondering if there is a time limit on the lifespan and what the quality of my life will be.

    i feel very alone, emotional 

  • Hi Haswell,

    My brother was diagnosed with PV recently and he has had a good prognosis so try not to worry too much. How high was you red blood cell count? His was 77 and is now down to 47 after many venesections. 

    He feels very tired after them but he knows it is helping. PV was classed as a blood disorder until recently and many people lead long lives after diagnosis and quite often something else causes their death.

    im sorry to hear you feel alone. Can you contact the Macmillan team for some support 

    try and get positivity pumping through you it definitely keeps you alive!

     

     

Reply
  • Hi Haswell,

    My brother was diagnosed with PV recently and he has had a good prognosis so try not to worry too much. How high was you red blood cell count? His was 77 and is now down to 47 after many venesections. 

    He feels very tired after them but he knows it is helping. PV was classed as a blood disorder until recently and many people lead long lives after diagnosis and quite often something else causes their death.

    im sorry to hear you feel alone. Can you contact the Macmillan team for some support 

    try and get positivity pumping through you it definitely keeps you alive!

     

     

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