My son was diagnosed with Budd-Chiari Syndrome

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My son was diagnosed with budd chiaris in october of 2004. he is 27 yrs. old. He had to have a liver transplant in december 2004. He is doing fine now, but had a pain in his left hand in june and was hospitalized. They think it was a blood clot. He will be on blood thinners for the rest of his life. Before his transplant they put a shunt in, but it clogged, and thats when they decided to do the transplant because his liver was too far gone after that. The hospital where he was at gave him excellent care, but with a rare disorder it makes me wonder if everything possible is being done. It is so hard to find anyone with this disorder. I would love to hear from anyone with any information on Budd chiari syndrome. Thank-you.

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  • Posted

    Your son is very blessed. It is a very rare disease, my friend has it...however cannot get on the transplant list as long as she has 15 % open in her liver veins. She has had them opened, rerouted and now the liver is enlarged.

    She has swollen and is enroute to the hospital now. Your son is blessed because he lived to have the transplant. Many die, waiting for the organ.

    Can you tell me what are any of the other symptoms? I know my friend gets confused, from the amonia coming from her liver.etc.

    I know she has the ascites and swells. When the liver enlarges, do you think this means they will consider transplant for her?

    Thanks, and NOPE your not alone!

    I also have iga nephropathy,,,suspicious of Alports syndrome,,,,,and it too is rare!.however....ive met a boy one mile from my home with it. Things are never so rare that God doesnt maintain his ability to step in!

    Smile,

    Kim

    [i:9fc18713b8]This message was automatically imported from the original Patient Experience[/i:9fc18713b8]

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  • Posted

    I was diagnosed with Budd-Chiari in approx. 2003. I have received numerous treatments and surgery at my local hospital, but in 2005 they decided that they couldn't really do much more, and referred me to one of the few (or possibly the only) Budd-Chiari specialist in UK.

    All three of my hepatic veins are blocked, and they've tried to drill through, without much success. I've had various stents and shunts put in, again without much success.

    I'd been told originally that most cases of Budd-Chiari are treatable with Venograms, stents etc, but I seem to be one of the few that needs a transplant.

    Although it's scary, I'm also looking forward to the op, so that my husband and I can think about having a family (I'd previously lost 4 babies, which they now think could be due to my liver problem); and lead a 'normal' life.

    Although the condition is rare, there are people who do know what to do, even if you have to travel half way accross Britain. I can't fault any of the staff in Birmingham, they've been wonderful.

    We all take our health for granted, until something goes wrong

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  • Posted

    Keep your chin up Chloe...God does work in mysterious ways and I am proof of that...I will pray for you

    K.P.

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  • Posted

    I been diagnose with Budd-Chiari Syndrome two months ago, my Dr. was very confused when he try to find what cause my symtoms, I have a surgery one mounth ago. I feel very along with this disease, I do not know another person who have this problem and share experience, and what to expect in the future, I do not know if I can still work, because my muscle strengh is gone, all my life I been working with terninal ill patients and I would like to keep doing this. From my expirience with my patient I learn how to deal with my disease. But would like to have a friendship with other person with same problem. Thanks for you attention.

    Patty Passadore

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  • Posted

    Hello I was diagnosed with Budd Chiari in 2000 because i have polycythemia ruba vera (blood that is too thich andd I make too much). I have been very fortunate and was treated at the Royal Free Hospital in London. they did an excellent job and I have 3 stents in my liver. I am on walfarin and aspirin to keep running thin so it doesn't happen again. Sometimes I feel so tired especially after i have eaten too muvch carbohydrate and I have to fight to stay awake, I am very happy that I found this website as I have felt quite isolated having to rare conditions

    Any helpful hints from anyone wouyld be nice

    Sally

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  • Posted

    Hello Patty

    Hope your son is still well, my daughter was diagnosed with budd chiari in october last year she was really

    Poorly and the consultants told us they could not believe that she had pulled through. She had been poorly for a few months really starting with back and stomach pains however GPs treated her for IBS even though she had never been tested for it! Around the middle of september last she woke up looking 6 months pregnant I told her to go back to the doctor who again told she had IBS no blood test taken or medical history my deteriorated over two weekscand visited the GP several times in thoses two weeks. She had to ask for a blood test and

    Even the blood test came back abnormal the gp did nothing. Anyway she deteriorated so badly I took her to the hospital she went into liver and kidney failure and had to have tipps procedure she recovered and is remarkably well at present considering how poorly she was she has since been diagnosed with a hole in the heart

    A blood disorder she will have to take warfarin for the rest of her life now I worry so much about het it would

    Be nice to here from other people in simlar situations

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  • Edited

    Hello,

    Finally i found some people who can understand what i am going trough.. I was diagnosticated with budd chiari sindrome last year, i feel fine now, but i am afraid for the fluture i don t now what to expect. I saw that you posted 14 years ago, how îs your son now?

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  • Posted

    Good morning

    I was diagnosed with Budd Chiari in 2000 and have been on walfarin ever since with no serious side effects apart from the need to check my INR levels.

    is your son on walfarin ? what hospital is he under?

    Sally

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