Once diagnosed with HE will it always be there?

My husband developed HE after having liver tipps procedure, due to his autoimmune liver disease which coincided with his chrons disease. He was due a bowel removal but they had to do the liver stent first because of the amount of pressure his liver would have been under doing bowel removal. The stent op almost killed him and he was in a coma for 3 days and a 13wk stay in hospital. His HE symptoms were very noticeable in those first few months, however 4 months down the line, other than tiredness and itching and a bit of jaundice he seems to be his old self, in actual fact far better than before his bowel removal and has gained over 3 stone in weight! We are due to see his liver specialist on Friday as he will need a transplant at some point (he's 33 now) and they had said it would be in the next year, however I think now his blocked bowel has been removed his liver does not have the same pressure as before. Will HE come back? Or can people just have a one off episode? Obviously he's on a lot of liver medication but returned to work beginning of Jan where he's on a phased return and will be back up to fulltime hours in 2 weeks, but so far he's coping quite well and looks better day by day. Any advice of wether HE can be a one off occurrence or not would be greatly appreciated. thank you! 😊

5 Replies

oldestnewest
  • Gosh, this sounds quite unique set of circumstances. I am not (and I suspect most on here are not) qualified to make any useful answer (proove me wrong by all means!)

    I comment on H.E. which I had acutley pre tx, I now have residual cognitive , memory, fatigue and wishy washy H.E. symptoms, consultant says (logically) now my new liver (thank you donor and transplant team) is functioning well, H.E. is not possible, but the PBC / Severe HE for months and months has possible scarred my brain to give me long term issues.

    Not sure if this helps, as always good luck. Charlie

  • Hi there.

    I suffer from HE (hepatic enchalopothy) since I get my Tipps shunt also.

    Never had it before my first transplant..even with massive ascites. I woke up just fine..

    But then I began having episodes. I'd be out up to 48 hours, with no memory at all.

    I even tore my pic line out of my body.

    I know enough to use the bathroom, and I eat.

    It's gotten somewhat better.

    But when I was last in hospital I had an episode and was told that my symptoms looked like an normal to me, but was on the edge of a coma.

    They gave me an enema straight away.

    My doctor is interested in maybe writing a paper on it.

    I'm an artist. Somehow, using my brain, focusing in conjunction with using my hands keeps the left side of my brain working, and also stops the shaking or flapping of my hands with my dominant left.

    I may bring a project to the hospital and offer it to patients with HE. I don't know why or how it works..it just does.

    I design 3D buildings already and sell those designs throu an American company. Now I'm selling my actual product at a tea shop.

    Being busy allows me to create and to feel worthwhile!

    I also am on two antibiotics to clear out th e toxins in my belly. Take lactulouse and I use Fleets enema. The enama removes everything right away.

    I do this when NOT having an episode.

    I'm back on the list for a liver kidney transplant.

    The first liver has a rare form of portal hypertension. I also take medical doses of blood thinners. Via injection.

    Also, only small amounts of red meat.

    Fresh veggies and fruit. The liver prefers it.

    Mine was getting so good I did not have an episode for five weeks.

    Now it's back.

    So, I guess it depends on many factors.

    Good luck!

    Kimberly

    Ps oh, and stress. Stress can really set it off.wq.

  • Thank you Kim for your reply, sounds like you've been through a lot and still are. My husbands on similar medication, and since his op in October has not had another episode. Diet wise it's hard for him as there's lots of fruit and veg he can't eat because of his bag, so we have mainly chicken, potatoes and pasta, but he seems good if it all, so fingers crossed it continues!

  • Dear all,

    Here is a link to a very interesting guide to hepatic encephalopathy.

    journal-of-hepatology.eu/ar...

    It does get quite technical but there is just about everything you would ever need to know.

    Jim

  • Thanks Jim, this is an interesting read!

You may also like...