Newly diagnosed with PV

Hello everyone! I was diagnosed with PV last week following a JAK2 test in hospital 7 weeks ago when I was admitted with a blood clot in the brain (they also found a benign tumour which is unrelated).

I am 63 and have worked happily as a Graphic Designer for many years and as a hotelier for the last 2 years. I also qualified as a hypnotherapist 3 years ago. I have felt progressively incompetent at work for the last year or so and noticed an inability to deal with numbers and maths (a bit of a problem as I am responsible for the accounts for both companies!) But I think this is due to the brain tumour more than the PV.

I have been experiencing PV symptoms for a couple of years - itchy skin and burning feet and I am now on Hydroxycarbamide 2x500mg capsules a day. I have given up both my jobs and my friends keep asking me why I am so much happier than I have been for a long time - I think it is because I now have a diagnosis to why I have been feeling unwell and I don't feel guilty about looking after myself. I now spend time with my wonderful friends and family who are incredibly supportive. I am thinking of taking up yoga and meditation and I also practice self-hypnosis regularly which is a wonderful way to 'escape' (usually to a tropical beach in my case). I do get tired very easily but find a day in bed or lying on the sofa picks me up for the next day. I entered some lino prints into an art exhibition on Wednesday last week which took my mind off things but I found to be quite stressful - so I need to find my limits.

Looking forward to communicating with you all and hearing about how you are getting on and maybe making some new friends...

8 Replies

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  • Hi Rosemary, glad you have joined. Maz

  • Hi Rosemary it sounds like you are coping well with your diagnosis but you will always find help here if you need it. I found it invaluable when I was first diagnosed with ET. Welcome to the site. Karen

  • Thank you so much - I'm getting a lot of comfort from this group. Rosemary

  • Welcome Rosemary,you will find great help here and always some one with similar problems.I am P V 7 yrs now,the exhaustion is hard to cope with,and now I get very stressed when doing exhibitions..I am sculptor,had to cut down to what I can manage...no commissions now ,just do things I want to do.In time you will cope we all do,and when tired ,rest is important,that is hard to deal with ,if you are the sort who likes to be busy...very best wishes and keep positive .

  • Thank you so much for your kind words - it would be great to keep in touch.

    Rosemary

  • Are you U K Rosemary? I am France ,most of the time,yes keep in touch,this is a 'lonely'maladie , we need to chat on this site.Best Wishes and keep strong .Sally

  • Thank you - would be lovely to keep in touch. Yes I am UK - What part of France are you living in?

  • We are South West,beyond Bordeaux, towards Toulouse.A lovely peaceful area ,lovely old Bastide villages,not a lot of traffic...except in the towns.Easy reach of airports for U K...tho we drive usually as have dogs with us and I exhibit in U K so bronzes to transport.Interested that you are 'arty',I find my work helps me to relax ,tho now cannot be under any stress to finish a sculpture,and no longer take commissions,well just a few.Perhaps if you can find an art outlet to relax,you will find it beneficial for overall health and dealing with the P V.Hope you are well just now,such an up and down maladie....I am not my best just now,H C T too high and higher dose of Hydrea...see consultant April 6 ,here in Fr....health care is very good.no waiting for anything as in U K,was diagnosed here,had same consultant,nurses ,Drs for 7 yrs...which helps considerably as they know me inside and out!!!!Best to you Rosemary...Sally

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