Hi, I was diagnosed 6 weeks ago having been blue-lighted to hospitsl woth AF and a very rapid heartbeat. My mri found evidence of 5 TIAs . I am now taking an anticoagulant and bisprlol amonst others. Having had 2 ct scans a vascular scan and an MRI together with numerous blood tests, I was diagnosed with Jak2 polycytosaemia Polycythaemia vera (PV) (apolises for spelling). I have been taking 1hydra tab each night. It has been very hard and shoking to accept my new situation. (My HCT and Platlets have been very high although HCT level crept into the normal range…just, at my last consultation. ). I really still havent got my head around it really. Really my onle symptom is fatigue and this affects my mobiliy. My legs feel like lead, I cant walk very far at all. Im finding this to be very distressing. I have 3 young grandchildren. I cant do the simplest things with them. I have trouble holding my 1 year old granddaughter. Its exhausting changing her nappy. I live alone, the easiest chores finish me off. I just want to be able to do things to feel capable of doing normal things, not to have to live with feeling so poorly. To be able to forget and get on with my live and most of all enjoy and be able to do things with my grandbabies.
Wow, welcome @Jack60 to our forum what a lot of medical news you have had over the last 6 weeks, I would be in shock for ages,.
You mention side effects and you also show so clearly in your post what complex beings we are and conditions are interconnected. you also haven’t long started on medications
Perhaps now is your opportunity to write a diary of your symptoms daily and their severity.
Speak to your special nurse, consultant or GP
Tell them your whole medical history and show them your diary
The Blood Cancer UK support line is there for you on 0808 2080 888.
Really look after yourself and enjoy your grandchildren and just pace yourself.
Please do keep posting I look forward to hearing more about you
Thank you so much. It was so helpful to read other experiences on this forum, to know that I’m not alone in this whole thing
I so want to be positive and get on with things but it so difficult feeling the way I do. I will keep a diary…more bt and venesection on Saturday so might be someone I can talk to then…if not I will ring the specialist nurse. Thank you for taking the time to speak to me.
Hi @Jack60 and welcome to forum. I’m glad it has helped you to read others posts. It’s on here we find people who really understand.
The most important thing I want to say is please don’t beat yourself up for not being positive. So many of us feel we have to put on a brave face and push through. I found that this doesn’t help in the long run.
It’s a huge thing and will take a while to get you head around things or to understand it all a little better
@Erica gives great advice in keeping notes of your symptoms. No question is ever to silly so write them down and ask them all. Do you have somebody who attends appointments with you? Sometimes this really helps.
A long time after my diagnosis I understood the advice ‘be kind to yourself’. It is so important.
Please keep posting and take good care of yourself 
Thank you so much:hugs: I will be keeping a diary of my symptoms in future. 