does anybody out here have portal thro... - British Liver Trust

British Liver Trust

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does anybody out here have portal thrombosis with portal hypertension from a block? I can't find anybody else to talk with about this

Narly profile image
6 Replies

My liver is not cirrhosis but I do have a blockage I've had some bililary problems, pancreatitis, gallstones and my doctor from Hopkins sent me home and said they don't really have a name for what I have just go home and live my life my life. that scary. I also have severe rheumatoid arthritis and osteoporosis. I just like to have someone to talk with about all of this

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NathalieR profile image
NathalieR

How can they just send you home? Pancreatitis is potentially a live threatening condition. Have you seen a specialist?

Hi Narly

I had portal vein thrombosis but also had cirrhosis. I am sure when the thrombosis was eventually found, 3 years after the onset of my problems I believe it speeded up the process of getting to the Assessment reviews. The thrombosis was not found after numerous US scans but needed an MRI scan to find. (I wasn’t sure whether the scan was a CT scan or an MRi scan because I have loads of memory blanks from that time 😁. But Phoenix assures me it will have been an MRI scan 😁. Rock on Phoenix 👍👍)

Good luck!

Miles

Narly profile image
Narly in reply to

thank you for that reply and best wishes to to you I'm blessed in that my liver is not cirrhotic apparently I'm in a 1% that they have not seen at John Hopkins before how I got this without having cirrhotic liver they don't know so even the specialists from all over the world don't know what to do for it except go live my life. other than having biliary issues gallstones and pancreatitis which they dealt with I went through a really bad time that was a year ago and I can't find a gastroenterologist that will see me because I have portal thrombosis and portal hypertension. No gastroenterologist locally will take me on because I have these two issues they don't want to be responsible for me. Thank you, God bless all of you out there who have worse problems and I guess I should just count my blessings and live my life accordingly 😊

Thanks MC but mine could NOT be seen by an US scan. My operator called over her boss and neither could see it. That’s my first hand experience 😁.

There wasn’t anything to clear up tbh.. but hey ho. Nothing matters except getting better...

Noniekin profile image
Noniekin

How was this diagnosed

I feel I may have same but ultrasound only shows fatty changes

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