Portal hypertension with varicies and MPN ET. Help

[Joall]

Morning guys. I've got ET which has left blood clots in my portal vein. It's made me have varicies which recently I've had banded. 2 weeks later I had an upper GI bleed. I'm on terlipressin to stop the bleeding but previously I was on warfarin to thin my blood. So worried I will start clotting again. Has anyone had anything like this.

[mschantelle]

I have this along with barrats syndrome, I’m afraid I don’t know what either are.. and I’m not a google symptom fan so I don’t do it, hope you find your answers x

[Joall in reply to mschantelle]

Thankyou x

[mschantelle in reply to Joall]

I will follow you and maybe I’ll find something out I need to know.. I think it’s very scary when it’s ‘ inny bits’ that you wouldn’t normally hear about.. my surgeon told me About mine on the way out of a surgery .. wasn’t really the best place to tell me things like that, I woke up during the surgery whilst he was digging around in my inny bits then he tried to converse with me after.. very bizzare I know but because I’d had a 2nd anaesthetic I was high as a kite, so his information was lost on me 🙈

[mschantelle in reply to mschantelle]

And... I wish you all the best with everything c

[Chelle_]

Joall, I have PV, Jak 2+, Portal vein thrombosis (blood clots) Liver Cirrhosis too. I have banding now every 6 months (used to be every 4 weeks) I am allergic to Terlipressin - took them three days to find this out - there's no alternative medication neither. I am on Warfarin and Hydroxycarbamide along with propranolol with a few other things for the liver stuff! Whereabouts are you being seen? Have you found the MPNVoice page (you will find lots of people with ET on their not so much the portal vein issues)

I was diagnosed 4 years ago with PV and 4.5 years ago with the portal vein thrombosis and cirrhosis.

How are you doing?