My father has recently been diagnosed with HE after displaying symptoms for over 3 years. Until recently, his symptoms seemed to fall under Stage 3, but his most recent episodes resulted in him being in a comotose state. He was not unconscious but was unresponsive and unable to move or communicate. He is now on lactulose and antibiotics again and he seems much better. My concerns are that he is obviously experiencing severe symptoms and I would like to know if anyone else has been, or knows someone, who was diagnosed late on and what their prognosis was. Thanks.
Hepatic Encephalopathy : My father has... - British Liver Trust
British Liver Trust
Hi I don't know if this will help, but last year I had massive GI bleed which resulted in me getting severe encephalopathy at the same time, toxins going to brain during bleed, I was not aware of anything it was touch and go situation as could have had brain damage, I obviously recovered have never had encephalopathy since, I am 62 years old with compensated liver cirrhosis and portal hypertension, if your father has correct treatment he should be OK, does someone live with him who can recognise the symptoms at an early stage and take over as you did mention he was unable to move or speak, I suppose you know already he should then, well before then actually,be hospitalised you don't say how old he is is it cirrohiss he has, I hope all goes well for him let us know, I never thought or did the doctors that I could make a recovery at my age losing 5 pints blood then getting encephalopathy at same time, so there is always hope. Angse
Thank you so much for getting back to me. The doctors have said that he has cirrhosis and that his liver function is obviously compromised as a result. He was having these episodes every six months or so and then they started to occur every 2-3 weeks, with increasing severity. Dad is 74 years old now and he does live with my mother. She is able to recognise the symptoms but they come on really quickly. The past 2 times he has been hospitalised. I hope the lactulose and antibiotics stabilise his condition but I do worry that he will have another episode. The last ones were pretty frightening. WJG
Glad he has you and your mum, yes hepatic encephalopathy is really scary, when I was taken into hospital with the blood loss, my family said I looked and spoke like a lunatic, thank god I knew nothing about it, this disease cirrohiss is as you know a terrible condition, and gives other conditions in the body that has to be dealt with such as HE as your dad has, I take it he has six monthly hospital visits, they will keep a close eye on him, did they say he should be seen by heptologist at a liver unit, if he is not tell your mum to ask that he
Be referred to one as they are experts on liver conditions such as cirrohiss, I am at kings college liver unit in london where you have scans on liver, blood tests, examinations, and anything thing else they need to do, hospitals don't really say sometimes but to watch what he eats is vital to the liver, protein is important fruits veg dairy products wholemeal breads
But if he needs to lose weight he can still do that eating above foods, sometimes doctors cut down on protein, its best to research that as liver disease can cause wasting of muscle mass, so if we don't eat enough protein its wastes away even more, there is a very good Article on this google
its called " alchohoic disease as a syndrome" even if his disease was not caused by alchohol the result is the same, it makes very interesting reading and could give you and your mum things to think about and maybe ask doctors about, gosh I have gone on". Angse.
Thanks for all of that information, it certainly is very informative. At the moment, Dad has seen a Gastroenterologist but no hepatologist as yet, perhaps this is something that we need to look into and request. We are also still waiting to find out how regular his check ups will be and what they will consist of. What kind of tests do they tend to do to monitor the liver? What scans etc. and how often?
I am so glad that you are receiving regular check ups and that you are doing well.
Hi Wendy. The tests my heptologist does are six monthly scans on liver area, to make sure no abnormalities are there, blood tests, and a talk with him afterwards, he is the one who can tell you everything you may need to question, it is so worthwhile seeing one, I also have gastroenterolgist in Kent where I live, as I have regular six monthly endoscopys, so tell your mum to see doctor to refer him. Annette. ( real name). Good luck
I have suffered bouts of confusion for 3 years in the early days it was very regular and even when I was awake I was never fully there!
Over the last three years its now reduced to an occasional going to sleep all day session, but the lactulose MUST be taken regularly and I have to remain very regular or I go off very quickly.
The lactulose can some considerable pain, associated with the going to the loo but its the only way of keeping me on this planet.
So as suggested a good diet and regular trips to the loo have helped me a lot
Thank you very much for your response. I believe that the lactulose can be very effective when taken alongside the antibiotics. This treatment has made a massive difference to Dad over the past week or so. I'm not sure whether you can take this combination indefinitely or not. I hope you are keeping well on the lactulose.
Hi, can you tell me what is stage 3 and what are the other stages? thank you
Hi its difficult really as everyone is so different, apprantly I am stage 3 my liver is well compensated, although I have varices and portal hypertension, I feel very well as if I have nothing wrong with me, stage 3 really is a worsening of the liver, but it can stay that way quite some time my doctor told me, abstinence from alchohol, no fatty foods fried food etc: fruit veg good fats avocados, about 1 weekly I was told olive oil on salads, instead of salad dressings from supermarkets, poultry, fish, all the stages are just a worsening of the disease, giving us other problems that have to be treated, same with stage 4 it just depends my doctor says on what you may get, you may not get all the symptoms at all, try not to worry just get your symptoms treated as they occur or not, me as I have portal hypertension according to doctors text books I am meant to have ACITES but I don't , so just keep healthy. Good luck. Annette
Hello, My dad is 69 and has been diagnosed with Cirrhosis nearly 3 years ago now ( will be 3 years in Feb) dad is currently back in hospital again now with another episode of HE. It horrible and for me and my sister to deal with its emotionally draining. My dad's brain doesn't function properly anymore, and to think a few years back he was driving HGV's its shocking. Dad doesn't understand hes problem either - in some ways its a blessing. Dad lives in sheltered accommodation - much to his dislike ( as hes divorced ) mainly for peace of mind to me and my sister to know if something happens carers are on hand. He has a very low white blood count, so hes immune system is very weak. Myself and my sister recognise the signs early on now, it starts with vagueness, and him speaking with a different tone to his voice. This time he had stripped his clothes off - which is very unlike him ! so I knew straightaway he was becoming ill again or had an infection. ( hes been in hosp 4 times in the last 4 months, he had developed kidney stones so had to have a general anaesthetic to insert a stent... then to have the stones blasted.. then to have collected a couple of infections along the way .... and only on Thursday he had hes stent removed by local anaesthetic and on Friday morning he said its the best hes felt in a long time.... it wasn't to last Friday evening he was acting very strange on the telephone, and after he had told me he had no clothes on I knew straightaway it was infection. I had to call 111 and get a paramedic to him and I had to take him to hospital ( by this time he was mildly confused and a little agitated, so here we go again with the start from scratch... different docs on the a&e which is a nightmare to start from scratch again. I knew the blood test would come back clear again as well - to which they did... finally on sat night they had given him antibiotics... hes starting to feel better today - and just had a conversation with him! We Still don't know what has caused the infection... Although even now my dad is asking what antibiotics can he take to stop him having infections.. he still really doesn't understand.
Im waiting to speak to the consultants again today at the hospital to find out more - because it appears that no one cares at the hospital done here, you are a number and when your well to be discharged your let back in to society and then they are move on to the next patient! no aftercare whatsoever. Dads cirrhosis is Non Alcoholic. When we were told about dads condition the doctor said he would live for approx 2-3years..... with the condition he has...........
Im interested in how your dad is doing and what the doctors have told you though...?
I'm sorry to hear about the difficult time you are having with your Dad's condition. I am at an appointment with my father just now so I will let you know what kind of things they say after it.
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