Having PV Can you drink ? And how long can you live for ?

[Miamistandup2020]

Hey everyone I have PV its super scary I am a dad.

[Mazcd Partner MPNVoice]

hi, welcome to our forum, we completely understand how you are feeling, it is very scary when you are told you have a MPN. I would suggest that you read as much as you can on our website about PV and the different symptoms, medications, and lots more mpnvoice.org.uk and particularly the page about PV

mpnvoice.org.uk/about-mpns/... I am sure it will answer many questions for you.

best wishes, Maz

[hunter5582]

Short answers. Yes you can drink, but be careful about dehydration. Be more careful to drink in moderation than you might otherwise be. Most people with PV live a near-normal lifespan. There are risk bands with different life expectancies based on a number of factors including how your version of PV manifests, non-driver mutations, co-occurring medical conditions, etc.

The best thing to do is to focus on living a healthy lifestyle, embrace life and enjoy it for as long as you can. Focus on how you live - not how long. Carpe Diem.

[ja66ck]

Before my PV diagnosis, I was a light volume beer drinker. After my diagnosis, I had decided to stop altogether, though my doctor said that I could continue. In addition to beer, I gave up drinking coffee, caffeine sodas (Pepsi/Coke) and energy drinks. I also started eating healthier. I believe that as a result of these changes (along with medication), I went from experiencing many symptoms related to the disease to experiencing very few. At the time of my diagnosis, I was on the verge of a heart attack and was possibly having mini-strokes (TIA). Feeling pretty blessed.

[Jschwab in reply to ja66ck]

That's wonderful... happy to hear about your new strategies. You are inspiring me. I have been terrible about eating too much candy the past two weeks because of trick or treating and Halloween haha. It feels good to take care of yourself that's for sure.

[ja66ck in reply to Jschwab]

I also had a terrible craving for sweets. Initially it was chocolate but that was triggering my pruritus, so I weened myself off of that. But, I then switched to candy and cakes to satisfy my cravings. I now only eat a handful of raisins a couple of times a day to satisfy any sweet cravings. It's a much healthier option and works.