Small update after my wife's first haem appointment...

[ItsJustMee]

Hi all, hope everyone is doing well.

So the 10th of June finally got here after all the waiting and worrying and we finally got to go see the haematologist at Barnsley (Dr Chan-Lam).

Basically he seemed very unconcerned and even went as far as to say he's quite confident it's not an MPN or even anything to be concerned about in general. He said her results aren't really showing it to be polycythemia but if it is, it's a very mild case. He also said he could see why whoever told our doctor it was an mpn might have thought that way but he wouldnt have said it or even been concerned enough to have us go in.

He ordered the Jak2 blood test but only to rule it out on the remote chance it turns out to be so buts he's pretty sure it will come back negative.

He also checked what I presume was her spleen and said all was fine.

We get the jak2 results in around 2 months time, but I feel so relieved.

Feel a bit upset at our doctor for causing this much worry and concern. Do you guys think it's safe to stop worrying now and this should just be classed as good news?

Ben (and Barbara).

[Jacqx17]

Hi Ben,

So pleased to hear Barbra has seen the Haem and sounds a really positive appointment!

Yes you should stop worrying or at least worry a lot less now! and definitely class it as good news, because as the haem said, even if it did turn out to be polycythemia, it would be mild.

And I wouldn't be too upset with your GP for starting all this, as he could have been onto something, that acted upon early can alleviate lots of symptoms, I went back and forth to gp for quite a few years, with fatigue and other typical Polycythemia symptoms only to be told that it was my age, lifestyle or life in general!

So I would be quite thankful that he wanted to make sure Barbra was in the right hands if need be!

So keep in touch and let us know the Jak2 result, but in the meantime both enjoy your baby and worry no more or at least a lot less than before!

Lots of best wishes to you and Barbra

Jacqui😊

[ItsJustMee in reply to Jacqx17]

Hi Jacqui, nice to hear from you again, how are you?

I will definitely report back once we know more, he did say if it came back quicker than the 2 months appointment he would write to let us know the results.

I know what you mean about the gp, I just think it was slightly unnecessary to mention the conditions name knowing most people google until maybe we'd seen the haem but then again we wouldn't have met all you wonderful people and learnt all about this.

We are definitely going to try and relax a bit now, summer is almost here too so that's nice (not that you'd know it here though, it hasn't stopped raining in about a week ☔).

Ben.

[Osteomyelio]

Has a bone marrow biopsy been done?

[ItsJustMee in reply to Osteomyelio]

No, I doubt they will do one if the jak2 test is negative which he suspects it will be.

[rkhabtec]

Yes dont worry the Jak 2 test will tell

[Wyebird]

Is he testing for jack 2 or MPNs. I went to Barnsley initially and I was sent for a blood test for mpn. Which I assume would test for all mutations.

[ItsJustMee in reply to Wyebird]

Yes he is testing for jak2 although he said he suspects it will be negative, they took 3 lots of blood so am not sure what the other 2 were for, I'm thinking one may have been a full blood count though as she's not had one since April.

[hunter5582]

Good to hear about the results of the assessment, but baffled by a two month wait. My JAK2 results were back within a week. Why wait to get the answer???

[ItsJustMee in reply to hunter5582]

No idea, he just said it takes a while to come back but if it came back sooner he would inform us the result via letter in the post.