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Hi I'm new here. I was diagnosed with PV on 16 Nov after a slight stroke at the age of 46. I am trying to get back to normal for the sake of my husband and dog. I have had to have 7 venesections but now my levels are back down and waiting to go to clinic in 2 weeks to see what happens next. My Levels were 7.5 when I had the stroke and I was told that I was the highest that the haematologist has ever seen. I only take a statin and a blood thinner. It has been an emotional time the last 3 weeks. I think I will take it all in my stride.

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Hello Janet, welcome to the forum.

I’m sorry to hear of your PV diagnosis. We, on this forum understand how that feels - and it takes sometime to absorb all the information.

I have ET and was lucky enough for it to be picked up on a routine blood test. There are many people on here who have PV and I’m sure they’ll be able to answer any questions that you may have.

Maz is the administrator of the forum.You can contact her to send you out some literature on MPNs. I found this very helpful in the early days of my diagnosis.

You will not feel isolated now that you have introduced yourself to us.

Take Care

Mary x

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Hello Janet

Welcome to this forum and I hope people here help when you have questions or just need to talk to those who understand. I have had PV for 30 years, diagnosed in 1988 after a heart attack. I work full time (and more...) and whilst I do these days suffer from some fatigue I can certainly live a normal life. If your counts have come down so well with venesections your doctor may carry on that way or you may start hydroxycarbamide or some other medication.

Probably one important thing to remember is that we are all different in how we respond to the disease and to treatment. I have taken Hydroxy for most of the last 30 years with few side effects though others find it harder.

Be gentle with yourself as you get used to this diagnosis and find the best treatment for you, but don't think this is the end of your life as you know it.

Good luck Fee

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Hi Janet, welcome to the forum. Mine is a similar story to yours,I remember how frightening the early days and weeks are. Remember we're here for you. I had a number of TIAs before my PV diagnosis and am now on aspirin and venesection. I'm 2 years down the line now and 44 years young. I'm interested in the meds they have put you on, a statin and a blood thinner and wonder if you know which and the reason behind? I oftenwonder why so many of us get aspirin and not other types of blood thinners. If your counts are managed well by venesection, you may just stay like that for some years, and may not need anything else for a while.

Life does normalise when it gets managed. In the most part we can just get on with it, although as Revfee says, we are all different and it depends on everything else we've got going on. I run a business and have 2 young kids, frankly most of the people I know with those two things in common are worn out, in bed by 9 everynight and complain of brain fog! It can be difficult to know which is PV and which is just my life! I do know that I certainly feel better than I did before diagnosis/treatment. I hope you do too.

X

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Hi Janet,

7.5 sounds dangerously high. I was diagnosed 3 1/2 years ago when I developed lumps in early 2014 and kept feeling faint. My bloods were over 6. I have been having venesections every since trying to keep below 4.8 trying to remember to take aspirin every day. Mostly have been OK apart from one month when bloods hit 5.2. Once the shock of having an illness wears off you will manage OK. The only frustrating thing is the docs have never worked out what is causing it. Bone marrow and other tests show nothing.

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Hi Janet

I don't have PV but I was diagnosed with ET following a portal vein thrombosis in 2012 at age 51. Fairly traumatic time and as you have experienced very emotional. You will get loads of advice and support from this forum ( I did) it's a great place to ask questions and just generally get support. there's lots of info on the MPN website too and Maz who runs forum is terrific.

All I would say is give yourself time to adjust and be good to yourself. Try and eat well, keep hydrated, get rest and sleep. I was I bad way physically when first diagnosed, in hospital for a little while and had to have 6 months off work. But with right treatment, support of medical staff, family, friends and this forum, things greatly improved and life got back to being more normal. I still work full time (yuk!!) and enjoy life as fully as I can.

Good luck with everything and let us all know how you get on at clinic in two weeks. Best wishes Lizx

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Hi Janet

My PV journey is very similar to yours... I had a stroke, although PV wasn't diagnosed until 18 months after it. I spent 6 months of that time off work recovering and recuperating with weekly physio. Then another blood clot 12 months later led to my PV diagnosis.

I was in total shock after the stroke as I was fit and 'healthy' didn't smoke and followed a relatively healthy lifestyle. Since diagnosis in early 2015 I have had regular 8 weekly venesections and take aspirin, BP medication and lansoprazole.

It does take a bit of time to adjust to the diagnosis but I've found that trust in your haem team goes a long way.

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Hi Janet, welcome to our forum, I hope it helps you to be in touch with other people, if you have any questions please ask. Best wishes, Maz

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