Daws11 years ago

In February this year, my husband found out about his MPD because he has a big clot in his portal vein which stopped blood flow to bowel, part of which he had removed and also congested his liver etc He also had messenteric venous thrombosis. I have not yet met anyone who found out about their MPD in such a near fatal way. His portal vein is now totally blocked, but collateral veins have formed, he is on long term warfarin for the blood/clot and he is yet to be treated for his MPD (he is Jak2 positive) as it is yet to be determined which one it is as his blood count remains normal.

Padipak in reply to Daws11 years ago

In December 2010 I was admitted to hospital with variceal bleeding and again over the Easter bank holiday in 2011 and a third time at the end of May bank holiday. My liver function wasn't right and my liver enzymes were all high. This caused the medical team to suspect alcoholism and it was quite difficult to get them to believe I wasn't an alcoholic. Overall I had five endoscopies over this period to staunch the internal bleeding. I had a portal vein thrombosis with some recanelisation and eventually was diagnosed with an MPD (though which one we don't know yet) and Jak2 positive (this was as a result of transferring to a liver specialist at the Royal Free who had the foresight to test for Jak2). I had lost so much blood by the time of my third hospital stay I needed an infusion because I went down to below 7 units. I have an enlarged spleen as a result and I am on long-term Warfarin and Beta Blockers (to control the pressure in the portal vein). My Protein C reading isn't normal but that is probably due to the Warfarin and the resultant lack of Vitamin K in my diet.

I am lucky that it was caught when it was and so far my blood work is within normal parametres. I attended an MPD Voice Conference in 2011 and was lucky enough to be able to speak to a specialist from the Mayo Clinic, Professor Reuben Mesa, who thought, following the symptoms I have described, it was likely that I would develop PV. That's just by the by though.

Anyway, when I think about my condition, I think relatively I am OK, I have adapted to the Warfarin and Beta Blockers and regularly test my INR with a home-testing kit. I don't drink alcohol, I regularly exercise and eat healthily and even go on holiday, though the cost of the medical insurance is a killer.

I lost a brother last year to sudden adult death syndrome, so in comparison, my condition doesn't seem so bad.

Finally, I think my experience was pretty similar to your husband's and I hope this posting helps you to cope with his condition because it is manageable.

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Seea11 years ago

Luckily they found the MPD in him now, wow. The way I found out was also in a drastic way! Im a 47 year old fitness instructor, living an extremely healthy life for years. Sept this year I had high bp and indescribable headache, dr admitted me to hospital on the verge of a stroke. They found I have ET and Jak2 positive with blocked arteries to stomach, 1 kidney and spleen. Also colateral arteries have formed, am on warfarin, aspirin, 2 BP meds, and hydroxyurea. All overwhelming when I have eaten organics and didn't put artificial anything into my body for 15 years.

Seea11 years ago

Hi Padipak am pleased to hear that your case is manageable, it gives me courage.

eastwood193211 years ago

I was taken into hospital in Nov 2010 with a popliteal thrombus. The right leg was totally blocked and the left was partially. They also found clots in lung, spleen and kidneys. Had emergency op on right leg and then treated with IV Heperin. It was from this that they found the ET. I was lucky the right leg blocked as it caused me to phone NHS helpline and they sent ambulance as I now realise that the PE in the lung was v dangerous. Anyway on HU, warfarin, aspirin, statins and metformin as they also said I was Type 2 diabetic when I was there.

Hope they sort out his diagnosis soon. Hopefully if his bloods are normal then he might not have ET, just because someone has JAK2 does not automatically mean they have ET. Let us know how he gets on.

nicki211 years ago

i have had et for a good few years i suddenly found it sore to breath and also had pain as if it was like heartburn i was taking gaviscon for it was not eating and the weight was falling off me my consultant ordered a ct scan which showed up an infarction to the liver i was put on hydroxcarbamide i have had a further 2 also i am also on persantain as well