Hepatic encephalopathy

Hi everyone hope you all doing okay I have frequent episodes where I remember nothing I go to bed feeling okay then next thing I am in A+E with awful confusion been having these episodes for 2 months each time hospitalised contacted sepsis and was severely ill last time 2weeks ago confusion not to bad but couldn't speak properly very slurred it came on so fast, last time was 3 years ago when I had gastric bleed then none until recently so worried as don't know anything fearful off all hospital staff the fear is awful am going to see my heptologist next month any ideas of what I should say, this HE has really battered my confidence any suggestions would help. Annette

12 Replies

  • Thinking of you Annette. Why don't you show him a copy of your post as it is here? It says it all

  • Thank you games maker I will do that thanks for replying Annette

  • So sorry to hear this. My partner has had a few bouts of HE & been hospitalised.

    The procedure appears to be to up the lactulose. I assume you are taking this along with Rifaxamin.

    All the best.xx

  • Hi thank you yes am on lactolouse as well as rifaxamin I find lactolouse does not really work for me Annette

  • same here.xx

  • Hi,I suffered with He, not knowing what it was,with some disastrous effects, and as you say don't know what one will get up to next, one time had an episode as I went into specialist/consultants surgery where they treated me so promptly etc,since then went through all relevant procedures and had a transplant in March doing well now and it is now when folk tell me we couldn't understand you I realise how bad it was now I talk to much. I found lactose worked well, ate rolled oats rather than refined type,lots fruit and Veges,no salt and drank lots of just plain water. I was also very scared of hospitals or any officialdom but staff were always so caring and kind.i do wish you all the best and I am sure you will be dealing with an excellent and caring team like the team I am associated with at King's College Hospital. Lots of Thoughts

  • Thank you chugalong you have given me hope , really hope they consider me for transplant I have everything now bleeds from mouth just once though varices, did have acites miraculously without reading just gone now this HE like you scared stiff when in hospital scared of all nurses when having episodes think all hospital are going to kill me,tried to escape on numerous occasions, makes me sound not so?

    Good does it but if others can get through it so can l thanks. Annette

  • Hi Annette

    The last time my husband was in hospital with HE they graded it at a 2......is everything else ok your diabetes ? Did you have a MRI scan it's my understanding the HE symtoms can be similar to other medical conditions,wishing you all the best x

  • Hi bluebells it came on so fast and so severe I just go to bed then wake up slightly in hospital this lasts about 3 days or longer, since HE came on diabetes slightly up but not to High I've had scans and also brain scan as they could not get to grips with the fact it's so severe, there is no illness of the mind I mean saw physiatrist who passed me on any mental health issues so definatley HE will be seeing my heptologist in July, as need to know what's to be done, yes am on macrolide and fixation spelt that wrong that's the gist of it all Annette

  • Take care and I hope your appointment goes well x

  • Hi Annette, so sorry to hear you are so unwell. I really hope you get some positive news at your next hep appt.

    Thinking of you, and wishing you well.

    Take care

    E x

  • Dear Annette,

    You must have someone with you when you are in hospital.. Is there anyone who can be with you to almost be your advocate?

    It must be so frightening to be managing this all on your own... The hospital should have volunteers or staff who are trained to be chaperones - you must ask for one... You need to also write everything down to take to appointments with you... Like the above post says try and take copies of your posts with you...

    Please keep us updated...


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