Do you have any issues with liver transplant due to BCS?

I had a liver transplant six months ago having been diagnosed with Budd Chiari Syndrome back in 1998. Since 2005 I have known I had an MPD acquired through JAK 2 mutation. It has been confirmed as Essential Thrombocythaemia which gives me an added risk of thrombosis and complications leading to my new liver being compromised. Aspirin, Warfarin and Hydrocarbomide are the trinity of drugs I take to take to help avoid this. I would love to hear from anyone who has a similar history, basically to hear their views on prognosis and ' stuff ' !

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  • hi , i,m on the liver transplant list - due to HHT - large AVM have formed in my liver , compromising the blood flow to my heart - so at present i have chronic heart failure and pulmonoary hyper tension. its hoped these conditions will improve after the liver opp . Its been 2 years since i was first told the only treatment would be a full liver transplant . ,but i was only placed on the list in feb this year

    i hope you are on the mend , your the first person who seems to have been through any thing like i am at the moment .

  • Hi Bejay,

    I know that liver disease and attendant complications is gruelling at the best of times. Being on the Transplant list added stress and worry. What I would like to convey to you is that, post transplant, you really do get your life back! My pulmonary hypertension has gone and I can do all the things I did before I got sick. Here's hoping you will experience the same. Hang on in there- it may sound trite given the suffering you are experiencing, but it's worth keeping as healthy as you can. Keep your eye on the prize, brother!

    Nick

  • thanks for your advice Nick, - i was realy pleased with myself the othe day i actually went for a walk it wasn,t long and i couldn,t talk to my husband as we walked but i felt better. I am trying to to keep active but is so easy to sit down and go to sleep .

    What have you started to do that you found difficult before

  • Hi Bejay,

    Firstly, apologies for assuming you are male in my last post ( or, if you are in a civil partnership...you get the idea! ).

    For me, being able to actively join in with my children's activities is a real joy. Like you, I had to force myself to appear ' normal ' in front of people, especially them. The look of disappointment when i had to tell them that i could not go to the park , or indeed anywhere, was one of the worst aspects of the illness. I hated having to go on a daily walk, but managed to force myself as it was one of the requirements of being on the transplant list, for me at least.

    Also, being able to eat, within reason, what I like is now another thing i can do. When i was on a low sodium, fluid restricted diet at first it seemed ok that i could have sweet foods, for instance, yet that was no substitute for food that actually tasted of something! Being thirsty , but having to wait until evening time before my " allowance " of a cup of tea was no fun.

    So, what goes for me goes for you too! That you got out for a walk, however short, is a major achievement. I hope we get some nice weather so you can venture out again.

    Take care and keep it up if you can.

    Nick

    PS I misunderstood the difference between pulmonary and portal hypertension. I had the latter.

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