Well after waiting since January I am finally (hopefully!) going to get my jak2 result and get a diagnosis tomorrow.
Part of me just wants to know what it is & know what I'm dealing with but the other part is terrified of getting confirmation. I suppose thats normal buts its going to be a restless night!
Vicky
Good luck! Once you know it is better as then you can face it head on xx
Hi Vicky, I totally understand what you mean, that waiting is awful and especially the night before! I felt like I was in limbo for all that time but also coming to terms with the thought of what I might have. I was quite relieved once I got the result confirming JAK2 back in November, at least you know (kind of) what you're dealing with even if the progression is different for each person. I'm seeing my consultant for the third time after 6 months at the end of next week (in NZ) and I've got some new questions that I didn't have last time 
I hope you got some sleep and get some answers.
Wendy x
Hi Vicky,We’ve all been there, so do understand how you’re feeling. It will be in your best interest to get the results/diagnosis and get a plan in place to monitor and treat you if necessary. Saying that, it doesn’t make it any easier though.
Hope it goes as well as it possibly can. We’re all here to support you as well!
Mary x
Good luck Vicky, I know I felt better after knowing what exactly was going on with my body and knowing there was a plan for treatment. Knowledge is power. x
Hi Vicky. PV is not so bad really. You’re quite right though - it’s much better when you know what you are dealing with. Good luck for today - we’re all behind you (that should scare your consultant 😊). Lesley x
Knowledge is power. Fear is False Expectation Appearing Real. It’s easy to spout platitudes isn’t it. We’ve all been where you are and generally we have felt better knowing than imagining. I suggest you write down the questions you have before seeing the consultant as it is all too easy to forget what we want to know when we are face to face with the consultant. I keep a little notebook where I write down questions in between appointments and tick them off as they are answered. Good luck and let us know how you get on as we are all here to support each other. Very best wishes, Jan x
If it’s any consolation (well not much!), five years on I still get the jitters before my regular appointments. I guess it goes with the territory. I wouldn’t say I was ‘terrified’ before those initial appointments because I’m a firm believer that power is knowledge and that the waiting is always worse than the doing but I was certainly overwhelmed with anxiety. And I can’t say the nights were exactly restful. Wishing you fortitude. Let us know how you get on.
Hi Vicky, as the rest have said, we’ve all been there, so totally understand how you are feeling. Write down all the questions you need answered, that way you’ll make the most of the appointment. Remember it’s your body and your right to that time so go prepared.
Keep in touch and let us know how you got on. As the others have said, we’re all here for you.
Kindest regards Aime xx😺😺
Hi Vicki. I recall my initial consultation like it was last week , but it was in August 2006. . There's no shame in being afraid to face it, I certainly was which is why it stays fresh in my mind. But it's better to know what you're dealing with, where you're at with it and how you're going to go forward and get on with your life despite it. .
Good Luck - Chris
Agree totally Chris, once you know what you’ve got, you can start dealing with it and I know I have felt more in control since I became more knowledgeable. I still get butterflies before every haem appointment and also before I get the results of blood tests which I know is nothing compared to what you have been through.
Kindest regards Aime xx😺😺
PS that’s why we need you on this forum Chris and others too who have been through so much. You all have the experience which will help others so much.xx
Good luck with the results - would a Jak2 negative be considered good in your case?
I only ask because in my personal case I was Jak2-ve but also triple negative.
Hope the results are bearers of good news for you.
Good luck Vicky, I know it's scary but you will be ok, we are all here for you, and we are all still going strong, you are not alone on this journey. Maz x x x
Good luck Vicky. x
Sending lots of good luck your way - you will honestly feel so much better knowing where you stand rather than the strange limbo zone of waiting. That is torture and I don’t think people realise just how strong you have to be. All the best and remember you have a great support team here whenever you need x
Thankyou all for your messages of support.
My Jak2 test is negative so the dr says its not PV. My sons and my blood tests are not right & my daughters in borderline so we're seeing Prof Harrison in August as it may be a familial problem x
Good afternoon Vicky.
It drives you mad all this time waiting.
No one can tell you not to worry because it's a human thing to do.
Know you are not alone in this reaction
We have done exactly the same thing.
Once diagnosed you will start to readjust.
Good luck and keep calm. Hugs andcxxxxx
Hi Vicky how did
You get on in clinic? X
Hi
My Jak2 test is negative so the dr says its not PV. My sons and my blood tests are not right & my daughters are borderline so we're all seeing Prof Harrison in August as he thinks it may be familial Polycythemia. I dont really understand the difference. I'll need to do some research!
Thankyou for asking x
It is a nerve wracking waiting for diagnosis. My heart goes out to you. Best wishes for your health.
Hi Vicky: The waiting is so hard, but as everyone says, there is something important in knowing what's going on. I hope you're able to get some sleep and good luck with your meeting.
Kim
Vicky
What an extraordinarily long time to wait for a final diagnosis. Cruel. I was in the consult room egging you on to ask all the questions you have bought with you. Remembering that we had all been through the process. I hope you felt that we had your back. How did you go?
Regards and a BIG E HUG
Anna
Encouraging consultation
Consultants in France
RE: 28F, Terrified I might have PV
I've met a consultant - and she was good!
