Hi sorry in advance for this post being a bit long winded!
I’m a 48 year old newly married, mother of 4 working as an HLTA in a primary school.
I have been reading all your posts for the last month while waiting for final test results/diagnosis/treatment and I have to say they have helped me immensely knowing I’m not alone and these symptoms I have are shared by others.
Yesterday I seen my haematologist and he confirmed I have Polycythemia Vera and my jak2 test was positive. I am on hydroxycarbamide, allopurinol and blood thinners and I am getting venesections weekly (4th one on Thursday 🤞🏾I don’t pass out like last week!)
I have had virtually every symptom connected with PV for the last 3 months - horrendous fatigue, breathlessness, headaches, dizziness, blurred vision/halos around eyes, enlarged painful spleen, abdominal discomfort, aching bones/joints and slight itching after a shower.
The venesections have started to ease the symptoms and I’m having more good days now, thank goodness!
Lots of my questions have been answered by this fantastic forum and I realise that some questions can’t be answered as we are all unique - but I’ll ask them anyway!!
Will the fatigue etc only get better not worse now I’m starting on hydroxy and venesection?
I’ve been off work for a month now and keen to get back to normality but scared I go back and get fatigued or working sets me back.
Will my spleen intermittently go up and down?
It was extremely painful at the beginning then eased off a few weeks ago but now I’m becoming increasingly aware of it again. Will meds help it?
Is it ok to drink alcohol?
I’ve had a very small amount alcohol on a couple of occasions and it affected me totally differently to how it used to. Feeling of fullness, discomfort and then hungover in morning after 2 little glasses of rose wine!! I’ve always had a great social life - usually involving alcohol- and it really upsets me to think I can never have that again.
Will the meds etc help this?
Still trying to get my head around the fact I’ve got this forever. I’ve always been a positive, happy person but this is such a strange feeling to come to terms with and also playing it down for my family’s sake - I’m like an emotional roller coaster!!
Apologies again for the lengthy post but thanks for sticking with me and reading it to the end!!
All help appreciated!