Doubtful of polycythemia

[Arneja]

Hi...this is about my brother in law. He volunteered to donate one of his kidneys to his sister (My wife). When we discovered he has high hb -18.5, pcv-54, RBC-6.2 constantly for the last 3 months. He has been one of the healthiest people in the family. Never had any symptoms of any problems. Still doesn't have any symptoms. He is tested for Jak2 mutation and EPO level. Hope we are on the right track and should we just stop thinking about him as a kidney donor ?

[Paul42]

Hi, lots of people only get diagnosed by accident, giving blood etc.

When you say tested for JAK2, is he JAK2 positive or are you awaiting the results?

Regarding organ donation, i have been told i wont be able to donate any organs because of my condition.

[Arneja in reply to Paul42]

Thanks Paul for your reply. We will be getting jak2 result by tomorrow.

You said you won't be able to donate any organ due to your condition. But what is your condition?

[Paul42 in reply to Arneja]

Hi

I have PV, i am JAK2 Positive. 95% of patients with PV are JAK2 Positive.

I hope you get the answer you want, its must be hard for all of you without this thrown into it too.

Paul

[tracey13 in reply to Paul42]

HI Paul my husband is jak 2 positive 63% what does the percentage mean.

We've not been told about this.

He's got pv

[Paul42 in reply to tracey13]

Hi

I am not really sure. There is something called allele burden which relates to how much of your JAK2 is mutated. It could be this.

That said i do not believe there is currently any supported evidence to suggest that the allele burden has an impact on how severe your condition may or may not be.

Maz would be the better person to find out though.

Paul

[Arneja in reply to Paul42]

Thanks Paul. I shall try to find about allele.

I am really confused though. Shall we discard him as a kidney donor and look for someone else in the family?

I think I need to enquire a lot :((

[friendofpiglet]

Take a look here: odt.nhs.uk/pdf/transplantat...

Page 7, paragraph 1 seems to apply.

I took myself off the organ donation register having PV JAK2+ and on HU but am now considering resubscribing.

I'd guess the need of the recipient would be part of the risk assessment anyway.

[friendofpiglet]

Yes, but it goes on to suggest that recipients' needs may override contraindication.

That's how I read it, but would agree that it's a bit opaque.

[Arneja]

Thanks for valuable replies. We have got 2 reports today. EPO (erothropoeitin) level is 12.6 (In range) and Jak2 exon 14 is negative. exon 12 report is awaited.

If that comes negative. Do we need more tests or that suggests it is secondary polycythemia ?

[Paul42 in reply to Arneja]

95% of PV patients are JAK2 positive, that doesnt eliminate it but is a pointer certainly. Secondary is caused usually by an underlying issue, usually something like smoking or living at high altitude.

[cmb82 in reply to Arneja]

Hey there, how did it went for your brother in law? Best