BCS

Hi

My daughter has just been diagnosed with a blood clot in her liver she has been really poorly now for 4 weeks, she had been going to the GPS for 2 weeks and they kept telling her she had IBS!!! she was only diagnosed on thursday last week but is really poorly. but we have been told it will be friday next week before a liver specialist looks at her scans and is he will then decide on a plan of action. I am getting increasingly worried that she may go into liver failure and kidney failure, I feel as though my daughter has not had any active treatment and is getting worse by the hour.

Has anyone else had to wait for treatment. She has had 8 litres of fluid drained off her tummy and is unable to tolerate any fluid or food and has been unable to for the last three weeks.

6 Replies

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  • Firstly, I'm sorry to head your distressing news. From what you say, it could be Budd Chiari Syndrome. The good news is that, if so, she has the acute form ( it has come on quickly ) so with the right treatment, which may involve surgery, may be medicinal or both, recovery is fairly swift. I know, I was that patient! Long term? Get a prognosis. But in my case it was another 12 years before a transplant was necessary. I've heard of patients going for 20 years +. I am well following the liver transplant I had 6 months ago. Please contact me again with more information if you feel it will be helpful. However, ask questions of the medical staff involved in your daghter's care ; they will give you reassurance .

    Try to be strong and call on others ; you and your daughter are not alone x

  • HI Nickprich,

    My daughter is 25years old, on the day I wrote the above blog (which was my first blog) my daughter deteriorated rapidly and we was informed that she had also gone into renal failure, we was told that she would be transferred to the liver unity at QE hospital birmingham with 4 hours. However, this did not happen as we were then informed that my daughters condition was now critical and needed critical care rather than a normal liver ward. she was put into critical care that evening and eventually transferred to the critical care unit at the QE the following evening. She had Tips procedure performed the following day and has made a steady recovery. However, she is still very swollen everywhere!!! we have been told by the consultant that this will take at least 7 weeks to go, even her face is swollen. Is normal for people to go into renal failure with this syndrome? Do you know how long the Shunt will last or is it different for all patients. How long did it take for you to get all your blood test results back as we have been told we will not get these results until she has her appointment with the haemotologist. Why did you have a liver transplant? how was you managed for 12 years and how was your diagnosis made? sorry to ask so many questions but I am really worried about what the future treatment is for my daughter.

    Pava x

  • Hi Pava,

    I will only be able to tell you about my actual experiences; I have little knowledge about renal failure other than an acute form I developed directly after a liver transplant and was corrected with emergency dialysis for just 24 hours.

    The transplant was the result of a long process that began in 1998. Little was known in my home hospital about the condition ( they assumed i was an alcoholic not telling them the truth about my drinking ! ) and it was only at King's College Hospital that effective treatment started.

    I had a TIPS procedure at around two weeks following admission at Kings. However, it was halted as my veins were not of the right sort for the procedure, so i was told. TIPS procedures have advantages and disadvantages compared to other more invasive methods of increasing blood flow in and out of the liver - please get information on this from a professional and reassurance that the symptoms you describe are normal. There appears to be a real worry about renal failure that you understandably have. I never had any issues with my kidneys until the Transplant 12 years later. When I did, it was quickly and effectively dealt with. Try to view the liver and kidneys as separate issues, both of which can benefit from interventions that can, relatively quickly, but not instantly, be successful and restore quality of life.

    My only medication was warfarin until a year ago. There was poor communication between two hospitals about what medicines I should be on in the last two years. My advice to you is, if one doctor, consultant says one thing, and another says something else, go to the Hospital's complaints department, spell out your concerns to them (it's confidential, they are on your side - it's their job ! ) and trust them to get it resolved. All medical staff are accountable after all.

    Following the TIPS The shunt that i eventually had was a Mesocaval shunt in early 1999. In between they tried to let my liver " find it's own way " with the help of anti - coagulation. It was not a success : i became very ill until it was apparent the shunt was the only option. Following the surgery, I was ' well ' in the sense that i had few if any external symptoms apart from what i now know was relatively mild ascites in my abdomen until this time last year. Despite a further shunt at the end of 2010, this time a side to side porto- cavil shunt to try and relieve the portal hypertension, it proved too late: the scarring or cirrhosis caused by the hypertension meant my liver disease was now decompensated e.g. not enough to prevent end stage liver failure occurring within a year By August 2011 the symptoms of this began . It was on that basis that transplantation was offered to me. The Budd Chiari prognosis was always spelt out to me, as far back as 2006, so it came as no surprise, yet was a shock if you see what i mean.

    50 % of Budd Chiari patients have the JAK 2 mutation that leads to a Myloproliferative Disorder ( MPD ). What caused the thrombosis that blocked my hepatic veins initially is ascribed to BCS . What caused the first shunt to occlude ( block ) is less clear - it could well be my blood had too many platelets, my anti coagulation was inadequate etc. The second shunt did not block: this time it was the liver itself. In other words, the best planned interventions can become undone ; you should try to view liver transplantation as the end game, maybe years away in which time symptoms will be mild or non existent, yet NOT in a negative light. Far from worsening quality of life it gives you ( me ) a whole new lease of life with minimal restrictions. In time, following screening, your daughter will be told her JAK 2 status.

    I hope this is helpful.

    Take care, both of you

    Nick x

  • Good Afternoon,

    I am the Health Information Manager here at the Trust, I have asked one of our specialist's his opinion on your post above, please see his response below:

    It’s difficult to be certain what is going on reading the info available is she inpatient or outpatient, who have they spoken with already? I’m thinking it could possibly be acute Budd Chiari?

    I would have thought the best course of action is for the mother (who I’m assuming is next of kin) to arrange to see the Consultant in charge of her daughters case as a matter of some urgency. They should have all the info to hand and could explain to her more fully what the suspected diagnosis is, the prognosis and the risks of liver and kidney failure. If they were unable to do so then I’d be wanting my daughter to see someone with better knowledge.

    I hope this is helpful, if you have any further questions please post again or contact the Trust on our free Helpline: 0800 652 7330.

    Kind regards

    Sandy

  • HI Both,

    Thank you very much for your comments, my daughter unfortunately deteriorated over the weekend and went into acute renal and liver failure and was transferred to the QE critical care unity. But thankfully has had Tips procedure yesterday and today she is recovering from her operation. She is still in critical care and I am optomistic that she will eventually make a full recovery. The consultants are happy with her progress and I am over the moan my daughter has eventually been treated for her condition. Has anyone else had a Tips procedure? and how long was your recovery.

  • Hi Pava, there has been some recent discussion about TIPS and recovery on this post here britishlivertrust.healthunl... if that will help at all.

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