No luck with an earlier appointment.

[ItsJustMee]

Well after being given the advice here to try for an earlier appointment at a different hospital, we tried today.

My wife called the gp (now they're finally open again after Easter holidays) and basically everywhere they checked is a waiting list until June, so basically no point changing the appointment we originally got given of the 10th.

However my wife found out a little more info about what the haematologist actually said in their reply to our gp. Basically he wrote that due to my wife's age (34) he suspects it could be an MPD (he used MPD instead of MPN) so wants her to come in so he can rule it out as a cause. (more bloodtests?)

I'm not really sure how to feel about the info, it's sort of a "it could be, but it might not" answer isn't it. Is this a "is until proven not", or "not until proven is". Kinda feel a bit lost again.

Is high red blood cell/hemoglobin always PV? As opposed to ET. (nothing else was affected at all except red cell size was smaller than average)

Anyway was just giving an update really incase you guys wondered. Guess it's just gonna be limbo now until June.

[Jacqx17]

Hi there,

I can only speak of my experience and what I've been told, and there are far more experienced and knowledgeable people on here who may correct me if I'm incorrect, but I have PV, and what flagged mine up was very high Heamatocrit levels, I also had slightly raised platlets, and it was only after lots of blood tests, that I was diagnosed with Primary PV. You can also have Polycythaemia without having an MPN, I believe that's a secondary, which basically means there's something else causing the problems and Not an MPN. I don't know if you remember when I replied to your original post but, before I was officially diagnosed the dr thought I might have had all the symptoms of PV but actually just suffering from dehydration!

So, the only way of knowing what your wife has for sure, is to wait I'm afraid to see the drs who will do the tests (yes more blood tests) and they will put your minds at rest.

I wish I could wave a magic wand and let you have peace from the worry, even if it were PV or ET she will feel so much better when they get her on a treatment plan.

But just to reiterate it's the haematocrit that they look at (amongst other things) for PV and Platlets for ET.

I'm sure someone with more knowledge than me will agree or put me right.

Please try not to worry, enjoy your baby and carry on being the lovely husband that you are.

Hugs to the 3 of you

Jacqui🤗

[ItsJustMee in reply to Jacqx17]

Thank you Jacqui and big hugs from the 3 of us back to you .

Her hematocrit was and consistently has been within normal (44-45), her red cells are the only ones that seem to fluctuate from slightly above normal to around 5.6.

Anyway, I appreciate your reply as always and my post was only really just to get this slight update out of my head cos it sometimes helps.

[Jacqx17 in reply to ItsJustMee]

Good 👍 That's what we're all here for, better out of our heads, far more damage done by holding it all in!

😊

[stillkicking]

Hi ItsJustMee,

Waiting for the diagnosis is such a difficult time, and you will be full of questions and fears. Waiting is a step on the journey that many of us here have been through too. Try not to consult Dr Google too much in this time, as the dear fellow really doesn't know about us, even though he is packed with information! I do realise some of what you will be going through because, in addition to having an MPN myself (so I have had to wait and wait for a diagnosis), I also did nurse my wife through a very difficult illness a few years ago and nearly lost her. It was a terrible time. So I do really sympathise and send you my very kind thoughts. Do keep in touch with this forum and let us know how you both are. Whilst we can't offer medical advice, we certainly can listen and try to help where we can.

Best Wishes to you both,

Peter

[ItsJustMee in reply to stillkicking]

Thanks Peter for your kind reply

[Ebot]

MPDs is the old name for MPNs. The reclassification was made by the WHO a decade or so ago. So it’s a bit concerning the Haem is still referring to an MPD. Hopefully just a slip. HCT levels of 44-45 in someone with PV would probably signal intervention but none of the numbers seem alarming and your wife is young. So hard as it is, try to chill. It sounds like the haem is being thorough and appropriate. Hopefully you’ll get some answers very soon. Wishing you all well.

[Wyebird]

Hi, I think I told you to try for an earlier apppointnent. Does that mean your wife is going to have her blood tests now so that the heamo will have the results at her appointment?

[ItsJustMee in reply to Wyebird]

I don't know, nothing has been said about that to us unless they're waiting until nearer the appointment (June) to request it?

[piggie50 in reply to ItsJustMee]

Some hospitals, as mine used to, take the blood just before the clinic appointment, they are tested and ready for when you see the consultant. So don’t worry if you don’t get a request before,

[Wyebird in reply to ItsJustMee]

I got recalled the day after my heamo appointment for another blood test. The results I was told would take up to 6 weeks. They took five. The blood test was specifically for an MPN. It was for the presence of a mutated gene. Don’t know if it varies across the country.