Hi
Has anybody with PV managed to return to work? I work in a very busy secondary school and I'm not sure if I'll cope , I'm worried about the fatigue and the reduced immune system (there's over twelve hundred kids in school and some of them are very snotty !) I was initially diagnosed with extensive blood clots in my abdomen and after ivestigations told I had PV. I'm still struggling with my stomach (CT scan on Tuesday to see how things are progressing) but starting to feel much better !
Hi Welliebobs, I guess the big question is do you enjoy your job? I too worked in a busy school office when first diagnosed with PV, but I enjoyed it and didn't really suffer too many symptoms so was able to carry on until I chose to change, although PV was never a reason for me to do or not do anything, so I've been lucky. I'm retired now, have MF and doing well on Ruxolitinib, so still no complaints. I suppose my advice would be to give it a go, try to carry on if you enjoy it, but if you don't then find something you do enjoy and can manage around your symptoms. Good luck with whatever you decide, best wishes, Christine
Thanks CT _1958
I do enjoy my job, I work in the nurture room in a school where the kids are from a very deprived area, so it's full on ! I'm on hydroxycarbamide which I seem to be tolerating fairly well. I'm thinking of asking if I can go back part time so fingers crossed x
That sounds like a really good compromise, you are clearly providing a much needed service for these children so I hope it works out for you so you can all benefit without it draining you too much. Good luck and fingers crossed for you!
I worked in a hospital, so lots of germs there. Have ET so might be different than PV. Never had any problems. Love my work.
Glad you’re feeling better! Hope your appointment goes well.
I’ve worked since my diagnosis, and before that when I was experiencing symptoms without a correct diagnosis. But I’m still pretty young, so that helps. I also work in a child-filled germ-a-palooza, but don’t find that I get sick that often. (Now that I’ve said that, watch me catch whatever funk goes around next, LOL. Go, Lysol spray!)
Hi,
I work at Leukaemia Care helping patients with this sort of question. I just wanted to say that if you are keen to return, don't forget you are entitled to ask for flexible working arrangements to help you return; part time is a great place to start as should be fairly easy for the school to implement considering that having you back some of the time is better than not having you back at all!
If you are worried about infection, the best person to talk to is your consultant or a doctor, they should be able to give you advice based on your current blood results. You can always try going back and see how you feel, it seems as if a few people here don't experience issues with infection despite working with children! It's always something you can mention to your boss, that you MAY be ill more often, it depends on your relationship with them.
If you ever need any help dealing with you employer, please feel free to get in touch with me, my email is advocacy@leukaemiacare.org.uk.
Hi, I was diagnosed with PV in 2014 and continue to work full time. I work at a university where I head a department with hundreds of students and staff so it is very hectic and long hours: but I love it! The one adjustment I made was to reduce the amount of foreign travel as I find trips very tiring. My disease is well controlled with Pegasys, with minimal symptoms, and most of the time I forget I have it. Pegasys boosts the immune system so I rarely get sick. But all our situations are different: ability to work will depend on the severity of the disease, the symptom burden and the job requirements. I hope you find the right balance for you. Susana x
Hi, I work in a care home with dementia residents. I absolutely love my job so when I was diagnosed with pv last year explained to management what it was all about. Well since then I have had no support from any management so this has led me to hand in my notice I leave the best job I have ever had on Thursday this week I would like to add that the rest of the staff have been fantastic it's just a shame the higher beings have spoilt it for me. If you enjoy your job stick with it and hope you have the support from your colleagues this helps a lot.
Nettie xx
Hi Welliebobs. I worked for over eight years after diagnosis. I was a sales manager in a busy city centre hotel. I went for phlebotomies then straight
on to my sales appointments no bother. I never told my employer about my PV so just had to get on with it 😊. I can understand your worry about germs and snotty kids 🤣 but even after starting Hydroxy I didn’t find a difference. I hope you can find a decision you are happy with 😘
I am ET and I teach in a university with 35k students. When at first, I was on hydroxy, I was really frightened to go back to work due to risk of infection. Due to drug intolerance, I had to change to Pegasys and I fight all the time with fatigue as well as other quite debilitating side effects.
When things are too bad and I hit that brick wall, I stop but I follow the recommended low inflammatory diet as much as possible, take sublingual vit B complex for the fatigue as well as gamalenic acid, Co enztme Q10 and vit E. Oh, and sublingual vit D3 (sunshine). I walk with a very fast little dog every day and try to remember to do stretching exercises. Not perfect but the bit I do manage to do helps immensely.
I hope this helps. ATB Penelope
Thank you all for your replies, I think I am going to take a bit longer off work then go back part time (if they will let me ) as I like my job and don't feel ready to retire at 53, although at the moment I do feel very old my back is really bad and my joints ache. I have managed to ride my horse but due to weight loss my backside ends up sore ! I am thinking of trying yoga or Pilates has anyone tried this type of exercise for joint pain?
Wellybobs x
You cannot beat yoga for your muscle and joint pain. I have them all the time but find they subside a little due to anti inflammatory diet and yoga. do give them a try. Oh, and don't forget the all improtant water intake. x
Hi Welliebobs,
I was diagnosed with ET in 2000, age 30, progressed to PV in 2014/15
I have always suffered with fatigue and gave up work in 2011 as I could not cope full time, and became a foster carer, which has been very rewarding, and challenging!!
Good luck and have fun,
Ourlife
Does everyone below retirement age work full time?
‘reasonable adjustment’ at work?
Ability to work
Pegasys not working as well with Calr
Pegasys not working
