Hello my husband was recently diagnosed with polycythemia, we have been told the JAK2 test was negative though I gather this does not rule out polycythemia vera as it is not a definitive test. Hubby has been ill for YEARS with one thing and another, we have rather a lot of illness/disability in the family and I always end up being the carer. I find this mentally exhausting and quite lonely at tiems so would like to connect to other carers of this condition partially to learn more but laregely for a bit if support myself.
Hope this doesn't sound to selfish.
Written by
wannahelp
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Hello, this doesn't sound selfish at all, it can be very difficult for the partner of someone with a MPN, when someone is diagnosed with a MPN it changes everything, and can take a while to come to terms with the diagnosis and the impact it has on daily life, and this in turn affects the partners/families of the patient. The people on this forum will give you lots of help and advice and support, but I can also offer you one-to-one support with a buddy, it may help you to speak to someone who has PV so that you get a better understanding of how your husband is feeling and can then help him more and yourself. If you think this would help then please email me at maz.cd@mpnvoice.org.uk and I can send you further details. Best wishes, Maz
Hi wanna help, sorry to hear you are a carer for hubby with polycythaemia. I know our partners go through the ups an downs of our MPN with us and my husband (I have PV) was in total denial to begin with that there was something wrong with me - he just kept telling me (and the consultant) that I was just depressed.
It does affect your relationship so don't feel guilty at all - you are not selfish because you go through all the worries too. You must be exhausted and I know how that feels after caring for elderly parents just prior to being diagnosed with PV in 2012.
I think that helped my hubby (and me) the most, was attending one of the forums which Maz organised up and down the country where you can speak face to face with other carers.
Email Maz and get more information from her and go onto the MPN Voice website to get trustworthy information.
Keep posting, sending you loads of E hugs to let you know I'm thinking of you and your hubby. Kindest regards Aime xx😺😺
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