Working and PV: I was recently diagnosed with PV... - MPN Voice

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Working and PV

NewBloom profile image
5 Replies

I was recently diagnosed with PV, I’ve been reading up on the condition, one of the reason I went to see my doctor was fatigue, I work in a type of job that requires shift work and often 24/7 on call rotas, I'm beginning to wonder if I'll be able to keep this up long term. I wanted to ask if anyone with PV has had to reduce working hours or change careers ?

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NewBloom profile image
NewBloom
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5 Replies
baggies profile image
baggies

i was diagnosed 6 years ago with pv,iam still working full time.but iam finding it hard with fatigue i get very tired at work and when i get home i just want to go to sleep.when i was first diagnosed with pv i was fine so i think you will be ok all the best

PVPVPV profile image
PVPVPV

I was diagnosed 2009 and will be 60 next month. I don't suffer from fatigue and have not had to change jobs or reduce hours. I have a sedentary occupation but lead an active life and assume my good basic health and reasonable fitness is countering the tendency to fatigue. However, fatigue seems very common and I am worried that I might lose energy. So I would like to follow up on the initial question and ask are there any PV sufferers who do not have a problem with fatigue?

harleydavidson profile image
harleydavidson

Hi Newbloom

I was diagnosed with PV in 2005 and managed a living in property maintenance until 16 months ago when I took a desk job for 30 hours a week. I do feel better for it and often sleep for a couple of hours in the afternoon and still have 8 hours at night. I'm 45 years old. Do what your body tells you to do. Good luck. Mel

Aime profile image
Aime

Hi I have PV diagnosed just this year. As you will have seen from my posts, I suffer from fatigue irrespective of hematocrit and other blood levels and have night sweats, itchy skin and sore bones. I am wondering too if I will be able to continue working 35 hours a week at a reasonably active job which also requires a lot of concentration when driving quite a lot. My main gripe was with my haematologists in Aberdeen who decided my fatigue was not related to my PV because of my current blood levels. I have an appointment in January, at which I will show them the information on the study passed on from Prof Claire via MPD Voice which acknowledges that fatigue can be a problem with the majority of sufferers. All I can say is thank goodness we have got this support from MPD Voice.

Hi I have ET and I struggled with work because of all the symptoms I was experiencing, fatigue being one of the main symptoms. In the end I reduced my hours to 32 over 4 days a week I figured the financial trade off was worth it. Even 4 days can be a challenge some weeks. I too get frustrated with my haematologist and specialist nurse because my counts are well controlled by Hu they refuse to believe that anything is related to my ET and their answer is to go and see my GP. I wish someone would campaign to make them all listen, as it can be very lonely feeling all these symptoms and no-one takes them seriously.

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