I was diagnosed with PV in January of this year when I was 38 weeks pregnant, my diagnosis was then changed to ET after a few months and then in the last month it has been changed back to PV as my Haematocrit was 51% andplatlets 768.
I have had 5 or 6 appointments with the hospital during this year and have seen a different person/ haemotologist at every appointment, they all seem to sing off different hymn sheets and to be honest I always seem to go to my appointments feeling one way and come out feeling the opposite. For example I attended one appointment and asked for more more information about my condition as the only information I had was a handout I was given at the time of diagnosis from Macmillan and the info I had read on MPD voice. I was told not to worry, to carry on taking my aspirin daily and nothing will change until I am over 60 ( I am 34 now). I felt quite happy at that and left feeling really positive.
At my next appointment I saw someone different, who changed my diagnosis to PV, advised venesection there and then (which I did) and also talked about meds, as you can imagine, I was quite shocked after being told nothing would change until I am at least 60.( I still don't understand how someone can make such a bold statement).
I have been to some appointments and have come home feeling like I am over reacting about my condition after asking questions, then other times I go feeling relaxed and reassured after previous appointment and come home feeling like I perhaps haven't taken my condition as seriously as I should - it is really frustrating and confusing.
Anyway - to get to the point of my actual question, I see some of you talk about a named MPD nurse for your questions ( I don't have one) and also, do you all see the same person at your check ups or is it always someone different like me?
I feel as this is something I will have for the rest of my life, it would be nice to have someone who I could have some sort of patient/ specialist relationship with and not see a different face every time.
It would be interesting to hear some of your experiences and understand if they are the same or differ to mine.