Hi, I have been diagnosed with PV for over a year now and was at a pre admission assessment clinic as I have two orthopaedic ops to go through in October and December. I just wanted to ask does anyone else feel that they have days they are jogging along dealing with their illness until they get a sharp reminder that they have something serious? I have to go back and get further tests due to my PV and it just sort of stopped me in my tracks (I know it probably sounds stupid) but it was like revisiting the day it dawned on me that I had something which would have to be closely monitored. Just wondered if anyone else has felt the same. Regards Aime

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  • Hi Aime, yes I do feel like that sometimes, most of the time I feel I cope very well and don't let it bother me too much and just think I am luckier than a lot of people, but every now and then I have a 'moment' and feel a bit sorry for myself. Maz

  • Thanks Maz - it is not really a big deal going back for tests but I think I just wanted to be "normal" if that makes sense!! It is good the hospital are being careful. Never mind I will be fit for 16 November - that's the main thing!!

    Regards, Aime

  • Hi Aime,

    I know how you feel. I have had PRV for seven years now just controlled by venesection and clopidogrel. Two years ago I had gall bladder problems and was booked to have my gall bladder out, however on the pre op tests my haematologist said he was not happy for me to undergo surgery until my bloods were better. He wanted me to start on hydroxy then have the op a bit later. I opted to wait and see, did not start the hydroxy and postponed the surgery. Luckily my gall bladder has been fine ever since. But, I did wonder that if I required unplanned surgery what would happen! I am afraid you never get away from that initial diagnosis and always have to tell everyone you meet medically about your condition.

    I hope everything goes well for you.

    Judy x

  • I have felt the same and i often still have some random moments that i still do. I found the hardest part for me is when some of my family members don't realise what we have or how serious it is, let-alone the lack of fore-thought to ask me how to spell Polycythaemia so they can look it up lol. This did happen yesterday, 6 years in lol.

    **We are not defined by what we have, we are defined by who we are.**

    And you Aime are clearly Awesome!

  • Hi guys - thank you so much for your support. This forum is the best thing for us all. I am lucky because my bloods are okay at the moment. Hope to meet everyone on 16 November at the MPD Day in London - should be out of my shoulder sling by then!!

    Kind regards to all, Aime x

  • PS - Infuseme - I like that quote, will remember it! Aime x

  • Aime so glad you posted this as I am sure your words speak volumes for all of us, it's just that little tickle that creeps into the mind when you don't expect it to. Yes, I know that feeling you talk about. So glad your bloods are good at the moment and will be thinking of you.

    Best wishes.

  • I think my husband experiences that every time he takes the pills!

  • Hi Aime, we propably all feel like that at times so thank you for posting. Good luck with your operations x

  • Thank you guys. Just back from hols in Gran Canaria - coped quite well with heat but come back with mega itchy skin!! Ops are not until 31 Oct and 11 December so got time yet. Kind regards Aime x

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