Got a diagnosis

Thank for your support recently. I went back to see my consultant yesterday. I'm jak2 positive so I've got pv.

He wasn't bothered about my liver levels, although my kidney results warrant monitoring.

I forgot to ask about my spleen as I seem full all the time.

I forgot to ask for a print of the blood test (do I ask the consultant or someone else -uk)

I'm back tomorrow for my first venesection...

8 Replies

  • Well congratulations on getting a diagnosis!

    If it's any help I just write down the 4 main blood counts in my dairy, so I have all my results going back years in 1 place: sometimes easier than getting a print out tho gives fewer details.

  • Who do you get them from? I think my brain was busy panicking and not paying attention!

  • Yes, I know how that feels! When I get in to see the doc/consultant I just get my diary out and ask them for the results and they read them out off their screen. They soon get used to this as a routine! I collect Wt, plts, Hb and HCT (with PV). Then I can have a look at my leisure. Usually no good asking a nurse as they can't usually get into the results screen.

  • The diary is a great tip. Write down any questions before you go into your appointment with the hematologist.

  • :-) easier to see trends with yr cell counts too if u have them in nice neat columns in yr diary - I also mark where I had a venesection and what dose of HU I am on.

  • Thanks. I need to get organised!

  • When they give me my prescription at the hospital to take to the hospital pharmacy there is usually a print out of my blood results with it, so I take a photo of it with my phone and when I get home I put the results in a spread sheet I have made for them so I can see any differences - (I'm retired I have the time!!)

    Best wishes

    Lizzie x

  • Thanks!

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