Budd chiari syndrome

[Nardiyaa]

Hi all I am new to this and feel like i need to let some things out when it’s all bottled up as i ak still confused, has anybody here suffered from Budd chiari syndrome? I have recently had a tip’s procedure and currently on blood thinners which makes me feel so low as I was a very active person just wanted to see how others have felt as I am aware it’s a rare condition but Doctors consultants can not give me a answer to how i got this.

[AyrshireK]

The BLT has a very informative page about Budd Chiari which may be useful ro you at:- britishlivertrust.org.uk/in...

Katie

[Nardiyaa in reply to AyrshireK]

Thankyou for the reply

[user2021a]

I have Budd Chiari and diagnosed 15 years ago after becoming very ill quickly. Had TIPS and on blood thinners. Live a fairly normal life other than hospital appointments and Having shunt unblocked. There’s a really good facebook group for Budd Chiari - it’s very rare. Have you found reason for your Budd Chiari?

[Nardiyaa in reply to user2021a]

thank you so much for the response, I’ve been really scared looking up on google and thinking the worst. The reason is still unknown yet just last week iv been put on warfarin but it’s just all very new.

[user2021a]

mine is due to a dodgy jak2 gene - I have polythycaema Vera rubra which is a form of relatively benign blood cancer which causes overproduction of red blood cells and hence clots. Sure they’ll check all known causes. Are you under the care of a specialist liver centre?

[123Ciska]

Mijn man heeft in 2023 de diagnose Budd Chiari gekregen. De artsen kunnen zijn bloedprop niet verwijderen omdat de risico's nu nog te hoog zijn. Hij is heel erg moe en heeft veel bijwerkingen door deze ziekte. We zijn benieuwd of er meer mensen zijn die eigenlijk geen behandeling hebben gekregen, behalve medicijnen. Groetjes