Budd Chiari

[CasReg]

Hi , This is all new to me . Is there anyone that has been diagnosed with Budd Chiari ? I am struggling to find much info and would be good to connect with other people . Thank you

[Hidden]

Hi, I was diagnosed with Budd Chiari in 2008 - feel free to ask any questions you would like to. There is a Facebook group for the condition which I also find quite useful to get other people's help. I think I have put my journey with Budd Chiari on my profile if you want to take a look at that. I am still here and relatively healthy, have also got Polycythaemic Rubra Vera- the reason behind my blood clots in the liver and have Osteonecrosis in my knee which is probably also caused by blood clots.Hope you are ok - it can be quite scary to be diagnosed. Also remember that if you google it and things like life expectancy with Budd Chiari most of the results are many years old and there have been huge improvements in the treatment since then - there are people alive and living fairly normal lives many years after diagnosis. The British Liver Trust leaflets and information are useful.

Ask away with questions

[Jo3560 in reply to Hidden]

Hi . I was diagnosed with BC in 2005 . I also have PCV and Jak 2 positive . I had TIPPS procedure shortly after diagnosis and I take warfarin and hydroxycarbomide daily . I have regular tipsagrams as my stent keeps narrowing so I get a build up of fluid / pressure in my abdomen and all over body . Since lockdown I have exercised daily (walking 10,000 steps a day ) and this seems to have kept my stent open and haven’t needed a tipsagram since last November !

I am under a fantastic team at the Royal Free which has one of the leading hepatology departments. I am also a member of the Facebook group Budd Chiari Syndrome- one in a million which is worth joining .

Happy to chat if you would like x

[Hidden in reply to Jo3560]

It's funny you should say exercising keeps your stent open. Back in 2010 my shunt got blocked. I could tell because my stomach swelled up again. The liver unit saw me and booked me in for an ultrasound to check it out. I had a walking holiday planned the following week - walking from Ilkley to Windermere - some 79 miles. I decided whilst waiting for the ultrasound I might as well go on the holiday but taking it easy and making sure I stayed hydrated with the view that I would stop if I felt worse. Over the course of the week's walking my Ascites improved significantly to the point of thinking I'd been mistaken that there was a problem with my TIPS. I was surprised when I went for the ultrasound to be told my TIPS was blocked. A venogram procedure didn't manage to unblock the clot so they decided as I was well to leave me alone - blood was flowing through my liver but through some smaller veins and capillaries. I didn't have further issues for another 8 years when I started to feel ill again and ended up having to have the TIPS recanalised. I do believe that walking helps your blood flow and keeps you healthier. I'm treated at St James in Leeds where have received excellent care for my liver, still having regular ultrasounds and venograms although a bit delayed due to Covid.

[AyrshireK]

You may have already seen it but the BLT has a page all about the condition at:- britishlivertrust.org.uk/in...

Katie

[Hidden]

Hi,

Here is our information on BC, we hope other members can support you too.

britishlivertrust.org.uk/in...

[Fishwick]

Diagnosed BC 2008, liver TX 2017.Doing great, leading a normal life.

Thanks to exceptional care of Kings College Hospital.

[TheMaestro07]

Hi, I also have BCS - diagnosed in Jan 2017. You can read my story on the British Liver Trust website here too, I hope it helps: britishlivertrust.org.uk/in...

[Buddsince2003]

I was diagnosed in 2003. I have been relatively fine. Lately been dealing with stress and have noticed that I have been obsessing about my condition. I have never spoken to anyone else who has the same condition. I think I have been afraid to find out what can happen. Sometimes I am just scared of what could happen having nothing to do with what is actually happening. I haven’t had to have a TIPPS or anything like that. I have been on warfarin and furosemide for edema as well as nadalol - blood pressure. The one thing I have noticed is that lately is that I haven’t exercised as much I was pre pandemic. From some of the stories I have read it has inspired me to get moving again. Would love to connect with more of you!