Budd Chari Syndrome

Hi.. is there anyone here who has Budd Chari Syndrome?

[Hidden]

Hi & Welcome - Had to look it up, very rare one in a million, but you already know that. Not sure I can help but I note similar characteristics, to some other rare characters on this forum. 🤓

abdominal pain, ascites, and liver enlargement. I haven't had yet?

Good luck.👍

[BuddChiari19]

My 13 year old has it

[Hidden in reply to BuddChiari19]

Hi! Wow. 13. Can I ask how you got such a young diagnosis? I was 23 when I was diagnosed and I'm 35 now

[BuddChiari19 in reply to Hidden]

He began having pain and ascites 3 months ago. Ct and ultrasound confirmed clots in his liver. Liver was failing. Had TIPS procedure but flow did not return to liver had to have a revision done to restore flow. Spent week and a half in PICU. Still in hospital today. I'm told it's rare for adults but even more so with children. Hoping to connect with others to get an idea of what to expect. Wish we could find another family with a child affected.

[ThreeSmiles]

Hi Moly

Welcome to this forum.

I have never heard that condition mentioned by anyone on here since I joined over a year ago but perhaps someone out there will know something for you.

Is there by any chance a Facebook group or any other support network you can join? Did the Hospital Consultant provide any information? Personally that’s where I would ask questions in you rare case.

Sorry to be of no use 😕.

Good luck and hope you do find some information from somewhere.

Miles

[ThreeSmiles in reply to ThreeSmiles]

Sorry - dozy old me - I didn’t read buddchiari’s post first - Sorry Budd too!!

[Fishwick]

Hi,

Diagnosed Budd Chiari 2008 with varices bleed.

Bleeds recurrent until 2011, banded and obliterated.

Medication kicked in. No further episodes.

2014 slight acities.

2015 increased acities and encephalopathy.

2016 major deterioration, fatigue, loss of weight, no appetite

2017 frequently ospitalised, regular fluid drains, worsening encephalopathy

July 2017 Transplant

Now. 100%. Advagraf and Warfarin daily. Bloods normal every checkup. Eternally thankful.

Everyone is different. Budd Chiari is rare, but I'd be surprised if you have it, that it won't deteriorate after a time.

[Jo3560]

Hi yes I was diagnosed in 2005 with Budd Chiari , myeloproliferative disorder and JAK 2 positive

Had TIPS Procedure and on average 3 tipsagrams per year ever since to keep the stent open . Suffer with stomach distension which rapidly decreases after each tipsagram but only lasts for a matter of weeks .

I am on warfarin, aspirin and hydroxycarbomide daily and am under the amazing care of hepatologist and haematologist at the Royal Free

We are 1 in a million !!

How are you feeling and what’s your story ? Which hospital are you under ?

Happy to chat and discuss further if you would like 😃

Jo x

[Hidden]

Its great to see the supportive replies on this post. We do have a publication on Budd Chiari that may be helpful to read:

britishlivertrust.org.uk/in...

We hope you find our forum a supportive place to visit,

Warm wishes

Trust1

[Hidden]

I was diagnosed with budd chiari 12 years ago. Had a shunt fitted, had it reopened a couple of times. Have PV JAK2 positive. On warfarin and haemoglobin kept low with heavy monthly bleeding. On diuretics as do

Get fluid accumulate in my legs and feet.

I live a normal life working full time. I get tired a lot. Feel lucky to be as well as I am.

Get fed up with hospital appointments but very grateful to the NHS and it’s specialists for keeping me alive and well.

Shout if you need any questions answered or to talk. Hope your journey living with Budd Chiari goes well.