New to this and saying hello :)

Hi all,

Just joined this forum and thought I would say hello. I was diagnosed with Budd Chiari syndrome earlier this year (Jan 2017), which is a very rare condition. Still coming to terms with a lot of things and there are lots of challenges but it's also given me a large slice of perspective on life, which at the age of 31 is eye-opening but also challenging! Hoping to make the most out of an unexpectedly 'negative' thing by being positive and taking things one day at a time. I'm as open as they come so feel free to ask any questions if there's anyone interested in knowing more - also hope I may encounter someone in the UK with the same condition, as so far I've spoken to just one person with it (only last week) and they are based in the US.

Hope you've all had a positive weekend!

Mish

58 Replies

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  • Welcome Mish,

    I've no idea what that is and I try and avoid google where possible, hope you're ok, there are lots of fab people here. I forgot I'd posted for a while as my memory is poop but this is a great place for support.. anyway being in the Uk too I'm off to bed now otherwise I won't get up ready to sort my daughter for school but nice to meet you :)

    Michelle

  • Thanks Michelle!

    Appreciate the reply. I'm ok, some days are harder than others but I'm sure that's the case for many people across the spectrum of conditions! I've been back at work full time for about 6 weeks now which feels surreal after 7 months off (2 of which were as an inpatient) but on meds for life for management of the condition. It's positive to know there are lots of fab people on here, no doubt I will come across many including yourself :)

    Sleep well!

    Mish

  • Morning Mish,

    Good to hear you're back to work, I can't seem to work at all and am leaving the industry after about 20 years, which is fine. 2 months in hospital crikey! I thought 3 weeks was hard enough, I didn't sleep at all! Came home exhausted.

    I hope you have a good day then, wet and windy here in not so sunny Surrey.

    Ho hum!

    Take good care,

    Michelle

  • Morning!

    Sorry to hear you can't work at all, what was your line of work if you don't mind my asking? I have changed roles and been promoted since I returned and my workplace have been really supportive, which has made a huge difference. I have regular meetings with occupational health (next one tomorrow) and the doctor is very interested in my condition too, so it makes it easy to talk about stuff. 2 months was indeed challenging, and there were some dark days (I didn't sleep flat on a bed from mid-October 2016 until some point in February 2017 aside of when I had surgery in hospital).

    It's been a mix of sun and light rain here so far, but Surrey is my old stomping ground! I studied and lived there for a combined 10 years, have a real affinity for the place and I miss it lots! Still have friends all around the county - Guildford, Woking, Epsom, Kingston etc, so I visit regularly. Lovely part of the world, i'm ever so slightly envious ;)

    Best wishes

    Mish

  • Welcome,

    I'm afraid budd chiari sounds like something I'd order to go as a side to my chicken tikka! I got side swiped by my liver about 3 years ago, best and worst thing that has ever happened in my life, it's taught me a lot about what is important to me and what is a waste of that precious resource which is time.

    All I know is to live, laugh and eat haribo 😋

  • Thanks Dulux!

    Heh, I know what you mean! A lot of the nurses that see me for my warfarin clinic can't pronounce it, nor can my GP and others I know that have any semblance of medical training ha! George Budd (British physician) and Hans Chiari (Austrian pathologist) are whom the condition is named after. It's strange how something can be both so challenging and positive, right? I feel that way too. There are days I feel empowered, in the zone and ready to take the world on. Other days are me on the sofa being a lazy mess!

    Living, laughing and eating haribo all seem like a reasonable idea...unless you're veggie like me and therefore don't eat haribo! M&S veggie percy pigs it is ;)

  • M & S Percy pigs are very yummy! I find haribos tough to chew but am grateful to them as I gave my daughter a few recently appreciating she was due to see the Orthodontist and finally got her last milk tooth, that was literally horizontal in her mouth as adult one is down, came out swiftly using them :)

  • Hello Mish,

    I, too, have only the slightest notion of Budd-Chiari. Something like blood-clogging in the vena porta. Could be something completely different, though. Years of googling my condition have left my brain stuffed with useless trivia I get mixed up all the time. I think Budd-Chiari showed up as a sample pic of how a certain kind of slow (or was it to-and-fro?) blood-flow looks like on Doppler...

    Glad you haven't lost your sense of humour. They must not take that away from us.

    Good luck,

    P.

  • Hi P,

    Yes, I don't think you're very far off! Essentially at least 2 of 3 hepatic veins have to be 'blocked' or 'clogged' for Budd-Chiari to be diagnosed (at least to my understanding). Because the symptoms are so similar to other things, it is usually one of the last things that medical staff in the know consider from my experience in the varying wards I was in (I went through varying diagnoses but after about day 45 as an inpatient at hospital number two it was finally confirmed, even though it had been ruled out initially at hospital number one). I have regular Doppler's (in fact one at the end of the month) that show whether the blood flow is still patent through my stent/shunt (I've had TIPS surgery through my jugular vein) - so you're knowledge is holding up well! I may even have to quiz you further next time ;)

    Mind me asking what condition it is that you have?

    Best

    Mish

  • I am supposed to have alcoholic cirrhosis. That's what they deduced from the US scans. CT a year later spoke of minimal signs of CLD, suspected biliary hamartosis (and overt PKLD, that one I knew already). Rare genetic disease, one in a thousand more or less. Problem with rare diseases is doctors do not see them often, if at all... So I hope I am due for a downgrade as far as the liver is concerned. I was just upgraded in the kidney league two months ago:-)

    P.

  • Oh wow, quite the mix! I agree on your summation in terms of rare diseases not being picked up, I guess they tend to look for things which are more common and miss the rare ones (mines is anything in between 1 in 100,000 to 1 in a million depending on different studies). Hopefully the downgrade comes for you! Kidney can be challenging or so I've heard, I spent a bit of time on a ward during my stay in hospital so really hope you receive a downgrade on that too! Keeping everything crossed for you.

    Best

    Mish

  • I've come across a couple of other people on other forums with this, I seem to remember it is quite rare. But it does carry so many of the symptoms of liver failure; Ascites, peripheral oedema and oesophageal varices.

    So what did they do in hospital and what meds are you on?

  • Hi RHGB,

    From my understanding you are correct in stating that Budd-Chiari carries a lot of the other symptoms that fall under the liver failure umbrella - I certainly had a severe build up of ascites (25 litres were drained over two separate drains with the rest coming out via diuretics, which I am still on 6 and a half months after being discharged from my 59 day stay across two hospitals). I also had an enlarged caudate lobe, hepatomegaly and splenomegaly, severe itching which eventually led to a soft-tissue infection in my legs (similar to cellulitis) at the site of the peripheral oedema. I did have an endoscopy early in to my hospital stay and there was suggested that I might have the start of what seemed to be oesophageal varices but I was taken off the Omeprazole when I was transferred to hospital number 2. My liver was scarred and I had abnormal bilirubin levels, so I was told so many different things (I went from having a heart condition in the first week as this runs in my family but I have had no other illnesses ever) to receiving differing diagnoses such as Wilson's disease, a lot of tropical diseases (in the last 3 years I have visited Brazil, US, Nigeria, Ghana, Kenya, Uganda, Saudi Arabia and UAE) contracted overseas, cancer, a tumuor, non-alcoholic liver disease, hepatitis. Funnily enough Budd-Chiari was ruled out as were the others slowly but surely, and I was given a 'working diagnosis' of non-alcoholic liver disease but transferred to another hospital to be tested for a liver transplant. It was only when I got to this hospital and they had failed to carry out a biopsy for the third time (twice at hospital number one) that Budd-Chiari was confirmed, and I then had an EEG before TIPS procedure. However, while awaiting surgery my canula burst and I had no other accessible veins due to them being bruised given how long I'd been in hospital etc. Having a central stitched in to my jugular artery was perhaps one of the more painful things I endured! I then had a few infusions of iron as well as proteins lost through the draining of ascitic fluid and was eventually discharged on daily heparin injections (until I was ready for warfarin) as well as furosemide, sprironolactone, aspirin, calcium tablets, folic acid and cetirizine - all daily and at varying doses. Off the heparin injections now as I started the warfarin in late Feb, was taken off the aspirin in mid-June and so my target INR was adjusted upwards but still on everything else (varying dosage of warfarin depending on score as it's still not stable) but diuretics have been reduced and the calcium tablets are now twice a week but a slightly different dosage.

    Sorry for the long reply, thought I'd get it all down in one response!

    Mish

  • Hi Mish

    Welcome to the group. I haven't been in hospital for my liver (yet), but I was for a spinal cord injury (incomplete). Basically I was in for 3 months. The worst was the time I had to lay flat on my back after the second operation with no more than a 30 degree uplift. It is amazing what the world looks like then and the skills you learn. Like how to drink a cup of tea through a straw, cut your food up when you can barely see what is on the plate. I would never have imagined being able to cope but it is surprising what you do when you have no choice isn't it? I bet you learnt some skills you never expected to use as well.

    I'm still coming to terms with my liver diagnosis. I've never heard of yours. There are times you wish you won, with the same odds, on one of the financial lotteries rather than the medical ones don't you. My dyslexia kicked in on George Budd and I thought of George Bush. I won't go there.

    I work part-time, and get tired easily so I think you are doing great working.

    I'm trying to train my palate to not think sweet foods at the moment and like many others trying to get the work, rest balance, play has also had to change, but it is amazing how we can adapt. Keeping positive is essential but hard.

    I've found everyone on here are a great support and hearing how much so many are working so hard to manage their health as best they can is inspirational.

    Best of luck

    Gx

  • Hi G

    Thanks for the welcome. I certainly have an idea of what you mean when you say it can be surprising what you can do when you have no choice. You find yourself being stronger and more resilient than perhaps you had thought you could be! 3 months sounds like you endured some difficult spells, and I hope that things have improved? I can't imagine what a spinal cord injury must be like to deal with - I had trouble sleeping with the amount of ascitic fluid in my body so really hope that it's something you have managed to do! Working is something I really wanted to get back to, I really enjoy what I do and now I'm learning about hepatology and haemotology I'm thinking that one day I might be able to combine the two?!

    With regards to your liver diagnosis, do you mind me asking what you have? No worries on the dyslexia - Bush wasn't exactly my favourite US president so happy to associate something 'negative' with him ;). A diagnosis as rare as mine is something I can't hugely grumble about it (well, given there are people with more common things but don't get to live etc) but winning the lotto seems like something I'd like to experience! Some of that money would certainly go towards raising awareness!

    I'm certainly needing to adapt my lifestyle a bit and hope I can learn off others on here as to how they have coped with liver conditions - great to hear that you've found support here and long may that continue!

    Happy Monday :)

    Mish

  • Hi Mish,

    Welcome, we hope you find the forum a supportive place to visit.

    The British Liver Trust do have a publication on Budd- Chiari Syndrome, we are in the process of updating this so please keep an eye on our website but you can still download the old publication, see link below;

    britishlivertrust.org.uk/wp...

    Warm wishes,

    BLT admin

  • Thanks, I already have the older version printed off at home :)

  • Hi Mish

    I have been on omeprazol since the second operation. First was to deal with the disc that they could get at, second opening the spinal canal and fishing out the rest. It's 3 years now since the second operation. I also have a lot of gaviscon. I am one of the lucky ones I got some mobility back in my legs many don. I still use a wheelchair a lot though. I have non alcoholic fatty liver and cirrhosis. Again I am lucky in that my liver is still functioning. I have recently had an endoscopy and everything else was fine.

    I was allowed by my g.p. to return to work mid January after I came out of hospital the end of November. He knew me well enough to know being at home would drive me crazy. Fortunately my work involves a lot of sitting down, talking and listening. It was a great Christmas present getting out early as I was initially warned I'd be in until January.

    One thing I did do in hospital was ask for some breathing exercises to reduce risk of infection on my lungs as I have chronic rhinitis. Hated doing the blowing exercises, but I think it is something everyone who can should do if they are in bed a lot as it really helped me.

    Just had a few days in North Devon. I love that area, but I must admit the hills can be interesting. I decided to skip the hill walking. Scared of heights anyway so the wheelchair is a good excuse. I'm not like some "brave" souls who post sci go up mountains with assistance.

    Back to work Wednesday. All day form filling so I will have to watch my spelling!

    Hope things settle for you soon.

    Take care

    Gx

  • Hey G,

    Thanks for the response. I guess the positive side of things is that your liver is still functioning, and that's important given it sounds like you've had one hell of journey given your past op's etc. I'm hoping you see the wheelchair as a new/exciting thing and still do some of the things you enjoy - like the hills of North Devon ;)

    I'm completely the same with regards to going back to work, I mean I loved being able to watch things, read and meet up with friends regularly but there's only so much of that one can do. I bet getting out early was like a pre-Xmas bonus!

    Good luck on Wednesday :)

    Mish

  • Thanks😀

    Gx

  • Hi

    You certainly cope well with your condition. Everyone on this forum is great. Please take care. Lots of love Lynne

  • Hi Lynne

    Thanks very much :) keep well too!

    Warm wishes

    Mish

  • Thank you. I've got Nash and fibromyalgia so I'm ok n quite a lot of pain but we have to keep smiling don't we ? Take care xxxx

  • We do indeed Lynne. Keep going, we all have challenging days but those positive, empowering days are so worth it, however few and far in between they may be. Thankfully we live in a world where this type of forum allows us to connect to others that have experienced similar things, and knowing there's someone out there that has a faint idea of what's happened to me (and other things that may happen) is a source of comfort.

    I have an old school friend with fibro, from what I learn from her it's a very misunderstood condition and many don't really understand. I hope that improves in time. I was on a working diagnosis of NASH but a lot of those symptoms correspond with Budd-Chiari, so I have some understanding of your predicament.

    Keep smiling :) x

  • Thank you , I will. I'm very lucky with a very good support network including work. My boss is also fantastic . Take care xxxx

  • Great to hear! I'm the same, seeing my occupational health doctor today! Management are also very understanding too, it all helps!

    Have a good Tuesday x

  • Thank you. No sleep again, on auto pilot!! Xxxx

  • Hopefully you got some sleep last night? :) x

  • Hi

    A couple of broken hours which is good for me!! How are you? Xxxx

  • Well if it's good for you then that's important! I'm a bad sleeper most of the time even prior to being diagnosed but I am hit and miss now. Friday and Sat nights were good but since Sunday gone my sleep hasn't felt rested sadly - sometimes just thinking a bit too much x

  • Thank you. Hope you sleep well tonight xxxx

  • You too! x

  • Thank you. Pain increasing at the moment xxxx

  • Sorry to read that Lynne hope you're ok, have you tried acupuncture?

  • Hi

    Yes I have. I did it for s few months without success. How are you today? Xxxx

  • Oh that's a shame, I'm 'ok' thanks how's you? Xxxx

  • Been rough today, everywhere hurts cos of my liver and fibromyalgia. Everyone at work was commenting and checking how I was cos I looked so rough which was really nice of them. Broke down in tears tonight cos of pain and exhaustion but I know there are people who are worse than me. Take care. Thanks for all your support. Lots of love Lynne xxxx

  • Aww bless you I'm so sorry to hear that I hope tomorrow brings you a better day xxxx

  • Thank you so much. How are you xxxx

  • Keep strong folks! One day at a time, positive energy (even though I understand that is isn't easy) will get you through slowly but surely. x

  • Thank you, that's great advice xxxx

  • Hi Mish, yes my husband diagnosed with budd chiari last year. We live in UK. We found the cause of my husband's budd chiari was from APS (antiphospholipid syndrome or sticky blood an autoimmune disease that causes his blood to clot) my husband is 43 and has struggled adjusting to no longer working. He has also just been diagnosed with HE.

    This is a great forum to use so welcome to you.

  • Hi Kazzb8

    Thank you very much for your response.

    Sorry to hear your husband was diagnosed with BCS last year. Sticky blood is something they have looked at for me although it's not yet confirmed. My blood is being analysed in terms of DNA and I have an appointment in December which will hopefully tell me more (or potentially that there is no genetic link).

    HE is certainly one of the things I am worried about, I was next to a patient in the ward at the Royal Free in London that had HE and I'm just keeping everything crossed that it stays away, although I know it is a possibility as is a possible transplant in the future.

    i guess I will deal with it all if/when it comes - and places like this will no doubt will be of support. Please pass my best wishes on to your husband, and let him know that there is someone else about that has a faint idea of how it feels to be in his shoes!

    Mish

  • Hi

    How are you feeling tonight? Everywhere is hurting especially my feet and ankles, they are the worst even though everywhere else hurts too!!! 😉 Xxxx

  • Heya,

    Been particularly fatigued last few days, last night I just decided to sit on the sofa and watch the TV after getting home from work! You're feeling better today I hope? I've been out and done some household shopping, relaxed evening tonight I reckon!x

  • No, I feel really rough today and it's my birthday!! How are you now xxxx

  • A HUGE happy birthday to you in that case!!! Sorry to hear that on this day of all days that you are feeling rough! Hope you've had some part of the day that's been enjoyable at least?

    Just shattered, trying to fight it but wondering if it's worth fighting it and just go to bed...but I don't want to go to bed ha...x

  • It's always nice spending the day with my family so that made it an enjoyable day and also people popping round to see me. Hope you are feeling a little better. Please take care. Lots of love Lynne xxxx

  • Hi

    How are you all today? Xxxx

  • Not too bad thanks and you? Glad you had an enjoyable day yesterday x

  • Thank you. My liver pain seems to be getting worse, I think I might phone my liver nurse tomorrow, what do you think ? Xxxx

  • Hi

    I'm still awake, not been to sleep!!☹️ I will definitely be phoning liver nurse before I go to work . How are you feeling? Xxxx

  • Boo that's rubbish, did you speak with your liver nurse? If so, how did it go? I slept poorly last night unfortunately after sleeping well (albeit due to fatigue!) the previous two nights. x

  • I've left a message and I will phone back if I get no reply xxxx

  • Hope it's a better day for you x

  • Thank you so much. I've left a message with liver nurse to see if my fibroscan can be brought forward as I feel so rubbish. The support on this sight us brilliant. I'm lucky with all the support I get on here, at work and at home . Thank you to everyone xxxx

  • Oh I missed this completely so sorry Lynne and a very belated Happy Birthday to you, I'm terrible at using this board! Xxx🎈🎈🎁🌸😱

  • Thank you so much xxxx

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