hi, my dad has had chronic HE since February, (very extreme HE for most of this year). He has just started taking LO-LA which I’m hoping will help things until he can get a liver transplant. Has anyone here had a liver transplant after HE and can they tell me if HE improves after liver transplant and how long it takes? My dads HE is the most severe end, extreme personality change, convinces himself he has an eating disorder, spends thousands of pounds on things he doesn’t need or enjoy and acts like a toddler.. a few weeks ago he also convinced himself he was cured and didn’t need a new liver (for context he is emaciated and doesn’t look like he should be able to walk let alone cured!). Slightly concerned that if he is lucky enough to make it to liver transplant, he is still going to have this personality. Any personal experience would be greatly appreciated. Thank you.
HE after liver transplant??: hi, my dad... - British Liver Trust
HE after liver transplant??
My husband had Hepatic Encephalopathy leading up to his transplant in June of this year. He'd had mild HE for years but at the back end of last year was hospitalized due to him becoming very severely poorly with it. He was sleeping loads, falling, having absences, didn't know his name, age, date of birth the current year or even the country we live in. I found him crawling round his bedroom soaked in urine and sadly he was frequently having accidents along these lines. He couldn't get himself dressed and clothes were going on in all sorts of weird orders and back to front etc. He was unable to eat, just chewing food without being able to swallow it and then ended up needing an n/g feeding tube which sadly he managed to pull out whilst affected by HE. Eventually he was only on supplement drinks as nourishment as he couldn't eat.
He'd been on lactulose and Rifaximin for years and was put on Lo-la in December 2023 but it made zero difference to him sadly.
He was transplanted because of his Hepatic Encephalopathy on 24th June this year and we are delighted to report that his HE vanished immediately upon transplant - we did go through a bad spell with poor mood and negativity post transplant but it was due to the high dose of steroids but now they have reduced he is way more positive and happy.
Your Dad needs dietician involvement if he's emaciated as there is a cut off where they can't transplant folks if they don't have enough 'reserves'. My hubby went into transplant assessment after being fairly fit but he did fade and lose more condition leading to transplant and whilst in hospital post op. His appetite and ability to eat took a while to come back but thankfully in the last 4 weeks or so he bounced back and is now eating well and getting better.
Katie
oh that’s lovely to hear, thank you for letting me know 😊 my dad has behaved in similar ways your husband has, can be very scary when it gets bad. He has spoken to a dietician and he did manage to put on a little weight but then HE got worse and he stopped eating again, so has lost weight again. If we can keep HE at bay he manages to chew and swallow his food and put weight on, I’m hoping Lola will help.
Thanks for sharing your story.
Is Dad currently on the transplant waiting list? Hopefully if he is then they can find him a liver a.s.a.p. We had a turbulent wait but thankfully only a relatively short one of around 5 months.
Best wishes to you.
Katie
I’m so sorry to hear that this happened to your dad I had HE before TP and it scared me and my wife, by the sounds of it I was very lucky to have it mildly and when I was in Kings College Hospital. The doctors were on it very quickly but I went through some very weird times . I told my wife that I had killed an old lady with a gun, and I can tell you it was real to me, also I was rude to the nurses which I am never they were fantastic staff. Also my wife traveled 1-1/2 hours on the train to see me and when she got to me within a few minutes I told her very rudely to go away so she did 🥴. I was really lonely that day 🤣. It was a horrible time but it’s over with lactose and Refaximin, all it’s left is the horrible doubt in my mind that if I ever suffer dementia is that what I’m going to be like?????.
Lot’s of hope sent to you and your dad I hope it’s over soon 💕💕. From the wife and I
Stay safe All
Dogbot 🌈🐶Dave
Thanks Dave, yes my dad has come out with similar stories, about stabbing a man in a shop (totally not true ofcourse). I’m glad kings were so vigilante with HE, the consultant my dad is under isn’t based at Kings and I don’t think he quite understands the severity of his HE, I am going to speak with him next week, I’m hoping he will speed things up with regards to the referral, I don’t want there to be lasting damage. Did you only have clarity after LT or did you realise something wasn’t right after lactulose sorted it out? Dad has had clearer days but maybe he doesn’t want to talk about it then, on his most ‘normal’ day when he seemed exactly like his old self, he told me he doesn’t realise what he is like and how he is behaving, almost as though he doubted whether I was telling the truth which I find frustrating.
I’m sorry to say but try to have a lot of patience with him and before you say I do I really know it’s hard 🤣, Kings managed my HE very quickly trouble is I have a ileostomy bag so when I took the lactose it emptied in my bag and I couldn’t understand what good it done me and it was only afterwards it was explained that it wasn’t just to empty me of all the waste it had quality’s in it doing me good ( which I’m still not sure about 🤣). Kinds had my HE corrected in about a week. As I said I was so lucky to have been in hospital at the time. Good luck 💕💕
Hi Dave, yes I know, I feel terribly guilty if I snap at him as sometimes it’s hard to tell what is HE and what is him. Yesterday I cleaned his entire flat, bought him new bedding, filled his medicine box up and he acted as though I was a major inconvenience, agitated and aggressive with me. So frustrating but it’s got to be done, I can’t relax until I know he has everything he needs. He forgets things all the time but if I try to remind him to get his keys, phone etc he gets aggressive with me. He causes total chaos some days, just totally uncooperative. He has been like this a long time and it’s defo taken its toll on me.
not yet, his consultant wants to refer him to kings and recommend he go for LT assessment due to HE and Ascites. His liver damage is caused by drinking, he has stopped now but the consultant onsiously wants to make sure he is serious about not drinking. How long is the process from being referred for a LT assessment to being accepted on the list? Also, my dad doesn’t seem to be able to identify when his HE has been bad, even when he is relatively clear minded but from what I’ve read on this forum people know when they’ve had a bad episode of it. Was this the same with your husband? It makes things hard when he doesn’t seem to acknowledge past behaviour that wasn’t quite right. Saying that he does seem to always have a baseline of HE so maybe that’s why he lacks clarity even on his better days. Concerned sometimes there might be something else going on.
There were times I was scared that hubby was starting with dementia - sadly we lost his Dad and both paternal aunties to dementia so it was scary. Hubby sort of recollects some incidents but other things he has no recollection of - he's got no idea how many times a night I was having to change him or clear up messes etc. It is a horrid condition.
If your Dad is now sober and has been for many months then his consultant should refer him to Kings a.s.a.p. Kings will then take care of his liver health and hopefully get him into a situation where he is fit enough for transplant. Sadly, without proper nourishment and fitness patients can reach a situation where they are just too weak for transplant and regardless of how poorly they are with liver symptoms the surgeons and anaesthetists won't say yes to listing.
The new criterion for transplant listing in patients with alcohol related liver disease has taken away the need for a minimum stated length of sobriety although Kings doctors and team will need to be asured that alcohol is a thing of the past.
I don't know how long referral takes for Kings as my hubby was under Edinburgh and had been since 2013 with a previous transplant listing (2014) and his consultant there was the one who put him on the assessment in January this year and he was listed at the end of the 4 day process.
Push for that referral to Kings because the risk of long term damage with HE is very real and you also want Dad to get into the best possible shape. (My hubby lost a good stone in weight between admittance for transplant and his discharge from hospital after 18 days).
Katie
Oh that’s filled me with dread a little bit. I have emailed his secretary. Do you know if there’s any documentation or anything on the internet that states that having to be sober for months is now a thing of the past? I’m assuming his consultant is unaware of these changes so if I could show him the new guidance I think that would help push him to refer dad more quickly.
It used to be the case that those with alcohol related liver disease needed to have a proven period of 6 months abstinence before being referred to transplant assessment but this changed in 2021 with the new guidelines below. I trust that Dad has been 100% compliant with sobriety since his diagnosis?
bsg.org.uk/getmedia/a5bd991...
The text from the above which is important :- Panel 1: What is new in the UK Liver Advisory Group
recommendations
• The requirement for a patient to solely complete a defined period of alcohol abstinence before referral for liver transplantation has been superseded by multidisciplinary specialist evaluation of a patient’s suitability for transplantation
• Clinicians should refer patients with alcohol-related liver disease to specialist addiction clinics in liver transplant centres or satellite units
• Patients who do not recover from alcohol-related liver disease despite 3 months of validated alcohol abstinence and optimal clinical management should be referred for transplant assessment, including patients who have been treated for alcohol-related hepatitis
• Multidisciplinary assessment of patients with alcoholrelated liver disease should comprise an evaluation by experts in addiction psychiatry, nutritional therapy, and liver transplantation
• All patients should undergo detailed nutritional assessment before they are sent for transplant work up, but this process should not be allowed to delay referral.
This from the British Medical Journal / Frontline Gastroenterology [fg.bmj.com/content/11/5/375]
Considerations in patients with alcohol and drug-use disorders
Alcohol
Best practice suggests that patients benefit from early referral to, and engagement with, local addiction services. Repeated non-adherence with documented advice to abstain from alcohol is an absolute contraindication to LT, so all discussions regarding the requirement for lifelong abstinence must be documented and the patient informed of the implication.
The UK Liver Advisory Group16 and National Institute for Health and Clinical Care Excellence (NICE)17 have recently updated the policies relating to referral of alcohol related liver disease (ArLD) patients for consideration of LT.
Patients:
Who are alcohol dependent and continue drinking (even at reduced levels) should not be referred. Referral to alcohol services and engagement is mandatory.
Who, after 3 months of validated abstinence, still have an indication for liver transplant, should be referred. Validation of abstinence includes random blood alcohol levels, alcohol metabolite testing and support from addiction services.17
Who are abstinent for <3 months, and positively engaged with addiction services, can be referred if there are issues (nutrition, frailty, etc) that might complicate the assessment, or death from liver disease may occur within 3 months.
Thus, there is no absolute rule governing the period of abstinence, other than patients must be abstinent at the time of referral. A pragmatic approach is to advise all patients with a failing liver due to alcohol, to become abstinent and engage with addiction services. If there is no immediate indication for referral for LT (as outlined in NICE guidance) then wait for 3 months to observe and if no improvement occurs, refer for LT. If, at 3 months, there is evidence of ongoing liver recovery, then a further 3-month deferment may optimise liver recovery, and also test the patient’s commitment to abstinence. At 6 months of abstinence, little further recovery can be expected and referral for LT is appropriate for any patient who remains in liver failure.
Hope that helps.
Katie
My husband has mild HE and does not recognise his strange behaviour. Sometimes it's very subtle, for example, putting clothes on back to front or saying he's hot when he's cold. Sometimes extreme situations where he says he is very violent, which we have been together for 49 years I've never known this from him!He has lactulose twice a day to ensure regular bowel movements, which he tries not to take, however I cannot emphasis strongly enough is very important that he takes on a regular basis, or whatever he has been prescribed. His hep specialist nurse has told me to up his dose if he doesn't go!
Best wishes Ax
Hi, personally I've never had HE but just commenting to say please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, thousands of people that have been in your situation, carers as well as recipients. Lots of support through the assessment process ,transplant and recovery.Hilary xx
brilliant, thank you, will definitely join.
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