diagnosed PV JAK2 positive around 2 weeks ago. To say it was a shock would be an understatement. The C word brings a lot of emotions to deal with, but deal with them we must.
I'm sure that I will find great comfort and a lot of information from this forum.
Onwards and upwards!
That's the spirit!
Stick with us on this forum, we know all the issues and (mostly) how to cope with them. As far as the emotions are concerned, stay positive and above all don't be afraid to discuss your condition with family and friends (they won't understand a thing at first but they'll get better at it eventually)
Best wishes
Andy.
Welcome. This forum is AMAZING. I still run through emotions 9 months in but a fighting spirit is Great! Talk to people as it does help. Any questions ask on here and people will answer. Take care x
Yes it is a bit frightening when you realise that the blood disorder you have just been diagnosed with is a blood cancer. Thoughts of imminent demise race through your mind.
Thankfully it's not like that. We all seem to live in a fog of fatigue which just seems to bu..er up our lives and cause anxiety for our loved ones.
Once you are over the initial shock it's a question of getting on with your life as best as the condition allows.
Enjoy the up-days and remain stoic on the more (probably) down-days.
It seems to me that having an experienced haematologist is the most helpful thing with this condition. Many people writing on this forum don't see an oncologist haematologist and some are just under a GP who has limited knowledge of the condition. That affects their treatment and understanding of what's wrong with them.
Thankfully forums like this help tremendously by sharing stories and symptoms so that you don't feel alone and often give you advice gained from painful experience.
As the Python song says, look on the bright side of life! It's the only one we've got.
Think of the C standing for Chronic Condition if that is easier to cope with. Many of us will die with our MPN not from it so try not to panic. There is a wealth of knowledge and experience on this forum so come here whenever you need to ask a question, express a worry or just to share good news with us too. Best wishes, Jan
Hi Muzza, welcome to our forum, we can all understand how you are feeling, there are a lot of emotions to deal with and lots of questions that you need answers for, I would advise you to read as much as you can on our website mpnvoice.org.uk and have a look at the videos of patients talking about their MPN journey, if you need any printed booklets about PV and any medication you are on email me at maz.cd@mpnvoice.org.uk. Best wishes, Maz
hi muzza i have probably had pv for many years without being diagnosed. i think of my condition as chronic as i am 75 years young and still going. be sure to drink at least 10 8 oz of water per day ( it thins the blood), i also take turmeric and ginger capsules. there are many ways to manage this condition as no one knows of any cure and i for one think chemotherapy is a bad idea. i am also a vegetarian, which keeps my acid level down.
by the way, soda is acidic which i never drink. i did a lot of research and am starting to feel better after my diagnosis a year ago. good luck and keep positive, it will help your state of mind.
PV diagnosis
JAK-2 TEST 
New diagnosis. PV
Anniversary - PV diagnosis
