Need some help preparing for my next visit to see the hematologist please

[James1731]

Hi everyone,

Just wondering if I can get some tips for my next visit to see my hematologist.

I've been having regular venusections almost one every 2 weeks for the past three months and my bloods have been going in the right direction.

On my last appointment my HCT level was 0.47 on the 28th Feb(almost time to celebrate) and I had another blood test at my doctors on the 14th March to measure the HCT level

Today I have had another Venusection but they advised me that my HCT was now 0.58 which was confirmed on the last blood test.

I'm not going to explain how I have been feeling recently as you all know what it's like but my real concern is that I still don't know if I have Primary or Secondary PV.

What do I need to do to prepare for my next hospital appointment?If my HCT levels are increasing even with regular Venusections,should I be looking for the next level of medication?

Can anyone advise please??

James

[bordeauxgirl]

Hello James , We can really only say what we do in our own case's . Personally I make a list of questions important to ME. Ask for a printout of all your levels so you can follow them test by test, ok we might not know exactly what they mean but as in my case it says whether I am high or low on the numbers .

Then ask any question regarding what these numbers mean and keep on until you get an answer, it might not be what you hope for but at least they can't fob you off with either your doing well or not so good , you want proper answers. Are you responding to the regime your on how's it affecting me. If and why your meds are changed or do they need changing. list everything the minute you think of them , if you are like me you can forget an important question until you get outside the doc's office then thing Oh cr## I forgot to ask about so and so. It is the only way I can cope with all this. But the most important thing to do is have the list in your hand when you go into the meeting with the doc. Just my way of dealing with my situation , hope it helps. Best wishes June.

[mhos61]

Hi James, I don't know too much about PV, so I hope someone can advise you on haematocrit etc., I am surprised that you don't know if your PV is primary or secondary though. That would certainly be my first question to the haematologist. I know from your previous posts that you do not have the Jak2 mutation, so I can see your predicament - but surely It's important that a correct diagnosis is determined for any future potential treatment.

Hope someone more knowledgeable on PV can help.

Mary x

[cwayman11]

Hi James..I have PV am jak2 negative and after a bone marrow biopsy which revealed no molecular markers my haematologist declared me as primary PV in spite of this given rising hct and good response to venesections. Originally my hct was 55% and I was given 2 venesections in 48hrs to get it down. I was also travelling internationally which drove the timeline. Your haematologist should be able to tell you if it is primary or secondary. I would ask the question for sure. It's important to know for a variety of reasons as I'm sure you know.

Good luck

Claire

[James1731]

Hi,

Thanks for replying everyone.

I only have to wait until the 29th for my next appointment so hoping for some progress and will make sure all questions are written down.

Problem I'm getting is they just don't seem to be getting answered.