I'm just wondering if anyone has any links to articles on fatigue with MPN- PV in specific. I'm 5 weeks post op from having my new hip and that's gone really well but I'm really struggling with fatigue. I should be grateful for all this beautiful weather we've had during my recouperation but I don't think the heat is great for us with MPNs. My gran had PV and I just recall her sitting there all summer in her nightie with a fan on and not doing much!
I go back to see my hip specialist in 10days but work have referred me to occy health prior to that. Obviously its still fairly early days after major surgery and I just hope the occy health team appreciate that and the MPN issues. Previously I did very long stressful days as GP and I just can't envisage managing them safely again at the moment and possibly ever, alongside parenting a 7 year old. I'm not sure how up to date the occy health nurse will be on our conditions so I thought I would try and get some info in readiness for the appointment. It was the occy health Dr I saw in Feb who advised I stay off to recover from all the venesections etc and get ready to have the hip op after being diagnosed with PV at the end of 2017.
My latest Hb/HCT fine as lost 3 pints during the op by the looks of things but platelets still over 600 and LFTs deranged despite the hydroxy so at least my bloods are evidence that my bone marrow still misbehaving and I'm not fully fit.
I suppose I'm just a bit anxious as have never had time off apart from maternity leave before and returning to work is bit scary after all this time. I just hope a phased return is an option and long term I hope the practice will allow me to reduce my sessions and avoid the long days fingers crossed but we are desperately under Dr so feel guilty re that.
Anyways sorry for the waffly post but if anyone has any links to fatigue articles I'd be most grateful and thank you all for your ongoing support and help. This group is amazing.
Heidi
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Heidi-W
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Hi Heidi, I have undergone a large number of Orthopaedic ops since I was diagnosed with PV in 2012 including a new knee. Each time I seem to take longer to recover and every sympathy re the fatigue as I have felt like a useless rag doll, unable to do much and every action, even washing myself, using up any small scrap of energy I had. I have tried all the good things: plenty of fluids, fruit and veg, energy food and nothing made a difference apart from time.
Definitely look towards a phased return, because if you go back too early and too fast, you will end up signed off again - done that!! Speak to occupational health - mine were so supportive. I have now retired due to ill health so have more time to be ill!
Take care, look after yourself. Kindest regards Aime xx😺😺
Ah bless you Aime. Hope your retirement allows you to do some fun things as well as being ill!
Thanks so much for the advice. I'll definitely try and get a decent phased return. I'm trying to conserve what little energy I have for when my daughter is back from school in the evenings, but she's quite a live-wire 7 year old so relying on play dates to help keep her entertained. Am hoping as the weeks go by things will be improve. Its just difficult as I think work may compare me to one of our managers who had her hip done last year and returned after 8 weeks. Luckily she is otherwise well and hasn't got a MPN to prolong her recovery time. I'll just have to try and get occy health to support me.
On a plus note the enforced fatigue has allowed me to read loads of books but more recently getting bit addicted to scandinavian dramas like the Bridge!
Tried to post this earlier but didn’t see it come through. So may be a reoeat
The link is to article on PV and includes good section on fatigue. Helps to dispel any “its all in your mind, try harder” ideas. Its all in your cytokines.
Just read the link very interesting I'm going to print it off myself and hand it to my manager ( refering to my post at beginning of the week problems at work ) thank you xx
Hi Heidi , I suffer from fatigue and have been trying to get my manager to understand what PV is all about. It is hard juggling kids job and PV, let alone a hip op. Take your time and enjoy having rests and your Scandinavian dramas
Ah thanks Nettie. Yes the article Rachel found is really helpful. Hope your manager will be bit more sympathetic once they've read it. Hope your family supportive too.
Sadly I'm up to date now watching The Bridge so a whole week before the next episode is too much. Going to request early bday pressie and get another box set on the go!
Just to report back the occy health nurse was lovely and felt I'd been recalled far too soon. She expects people to start to go back to work after 10-12 weeks post major hip surgery if working clinically and that's without having an MPN so I go back to see them mid July. Was a big relief and now I'm waiting to hear back from work about trying to reduce my sessions long term finger crossed.
I have just had my hip operation three weeks post op.My platelets have gone up from 747to808 and I am now on three hydroxy tablets a day.Howlong was it before your platelets went down ?
I am feeling very anxious about this ,my actual hip operation went well
Glad the op went well. Your platelets will naturally rise after the trauma of the op but hopefully over the coming weeks they should settle back down to their usual level so try not to worry too much. Hopefully by 6 weeks they should be settling well. Really glad the op went well for you and keep walking as the physios say.
Thank you. I've been back at work now for 4months but still on phased return and long term have reduced my sessions as fatigue/brain fog not great alongside my arthritis !. hope you are keeping well. Thanks
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