By brother is currently waiting to hear from King’s on going up for an assessment for LT so clearly at an advanced stage. He has hepatic pulmonary disease and is on 8ltrs oxygen 24/7. He is in bed most of the time and over the last few days his hand movements have become very slow and he is struggling to put words together. At what point should I panic? His mood is always very low so it is difficult to establish if it is linked to that or something more serious?
Many thanks
Ruth
PS I think you are all so brave and hope those of you that are Ill find recovery
Hello Ruth, this is such a hard time for you and all the family who have shared in your brothers liver journey. These are very hard times and seeing a person being like this can be distressing. I take it that by now you may have an understanding of what HE is about and what is happening.
There is a scoring system that GP's should be using to determine the amount of damage that is being done to the brain. However, this system is still fairly new in the UK so most GP's might not know of it. Hospitals certainly should know by now.
This test is called, "The West Haven Score". I have attached the following. Here a doctor should assess the patient and grade them accordingly.
Is your brother presently taking any medication such as Lactulose, Neomycin or Rifaximin. The earlier treatment can start, the less damage is caused.
If this is treated early enough, then the brain damage can be minimal. The brain may be able to rewire its self in some case. But if left untreated it can bring on early Alzheimer's disease long turn: onlinelibrary.wiley.com/doi...
I suffered terrible HE, and now after four years post-transplant, I still have some issues. My brain for example just doesn't spot silly typing errors. It just sees the error as being normal. I could for example type the word “This” but what I meant to type and what my brain sees is “That”. So, If I wanted to type a sentence that read “That was a very nice meal we all had”. My brain would type and see “This was a very nice meal we had”. Even though the spelling is right, the wording is wrong, but my brain and eyes just don’t register it. Sometimes I can proofread something three times and still not see any errors.
I can also become confused, and become flustered. Don’t try and ask me to thread a needle, that would be impossible, and the room would turn blue with my frustration.
The final matter that needs to be dealt with is that if he has a driving license. The DVLA must be informed. There have been cases in the past where people have driven down the wrong side of the road along a motorway, facing oncoming traffic. Confusion and short-tempered can be a dangerous mix when driving a car.
A driver MUST inform the DVLA of any changes in a person's medical state that may impact upon their ability to driving safely. If a person was to continue to drive and ignore this, then their driving insurance becomes invalid. These are both serious offences.
I hope you get the help and support your brother needs.
Thank you so much for your reply. It sounds like you have had quite a journey but are dealing with your challenges, so well done. The info was really useful.
My brother has never driven and has lived a life of nonconformity. He is alone but I keep an eye on him with the help of my other brother(I’m the youngest). I managed to speak to him on the phone earlier but it was difficult to understand him and when I said I’d ring the hospital he said ‘don’t interfere’ which is unusual as he trusts me to ‘manage’ him as he says!
His GP does not engage and is currently under investigation for failures in his care of my brother (I complained).
Thank you for your most welcome reply Ruth. I’m going to relate to you a true story that happened a few years ago. I won’t use any names as I feel this would be a breach of confidentiality and be disrespectful.
My reason for mentioning this is hopefully to give others a chance to make plans in advance and hopefully avoid any complications later on.
Before I tell of this story. I’d like to quickly pose a thought, just to paint a picture. If a person was to attempt suicide, they can be deemed to be incapable of rational thought. They can then be sectioned under the mental health act and get to receive all the medical help they need.
Now for the story. This happened about two years ago now, here on this site. Katie, Laura and I all became involved via private messages of help and support being flashed backwards and forwards.
Basically, this family consisted of a husband, wife and two small children. The husband had developed alcohol-induced end-stage liver disease and was suffering from terrible HE episodes. It got to a point whereby the wife felt the children were being psychologically damaged from watching their father's condition deteriorate and of the threatening behaviour of his rages. So they separated. He moved out and got a flat locally.
This man’s wife would go round regularly to make sure he was alright, But on this one occasion, her husband was suffering a terrible variceal bleed. Because of his HE episode, he wasn’t able to think clearly as was refusing all medical help. His wife had called the emergency ambulance, but the husband was still refusing all treatment and refusing to go to the hospital. (In his HE state, he didn't see anything was wrong.) After a while, the ambulance crew left as they maintained they couldn’t force him to have any treatment even though he was lying there covered in blood, but refusing treatment.
Sadly this poor man died that night, and that night the wife lost her husband and the children lost their father. So, what can happen so this sort of thing isn’t repeated? Firstly, the police have no powers to intervene if the person is in their own home. So, the police on this occasion couldn’t use their sectioning powers under the mental health act, so they wouldn't be involved.
Now, what I’m trying to do is to use the West Haven Score system as a way of accessing a person's mental state. If a person was to score say a two or three, Then advice should be given into possibly considering nominating a responsible person such as yourself or your brother, to act as Power of Attorney over your brother's medical needs. This would give you or your brother the power to allow the ambulance and medical staff to treat him and getting him all the medical care he needs.
I think this is just one thing you might want to consider.
Now, there are those I know who will most likely disagree with this, and feel it might be an infringement upon someone’s liberty. But, HE is a seriously debilitating condition, and some people may end up suffering from worse symptoms than others. A person’s mood and behaviour can change depending upon the person.
I like to use this video of Charlie and Angie Hobson to illustrate how HE can affect people differently: youtu.be/LdWhPUIWt1I
I sincerely hope this is of some help and that the point I’ve raised be considered, they may seem to be harsh. But I would like to think that lessons can be learnt from the death of that poor man and that his death wasn’t in vain if it helps others.
Golly, what a comprehensive reply-thanks for taking the time to reply and share the video. You totally are right about the situation as illustrated by your story. All yesterday I was worrying he might have deteriorated further. I just had a text from him earlier as the hospital had rung him (as a result of me contacting them). He said ‘you did exactly what I told you not to’(by contacting them). So is not happy. I spoke to 3 different professionals who said I was doing the right thing-one spoke to him on Friday and agreed he wasn’t right. So frustrating and worrying.
So true to all you say. I am five years PT and had HE pre transplant. I was in rifaxamim and coherent speech was impossible before transplant Sam as mood swings as well as personality changes. I have same after effects but all I say is hang in there we have the best support there is
Richard, as always you give great advice. I too experienced HE acutely and was told I had background encephalopathy. Since my transplant I too have noticed wee changes that are more irritating than significant. I use similar words rather than the intended word. I don’t remember words and find this frustrating. I was told that encephalopathy was a dangerous state and should be reported as early as possible to prevent lasting damage. Thanks again Richard and good luck to FamilyofMáire
This is such a difficult situation for you and your family. It really does sound like he has hepatic encephalopathy (HE) and it is important that his medical team are aware of this - both locally and at the transplant centre as it is just possible that it may speed up admission for assessment.
Here is a link to our information on HE and also the Patient charter - what someone with a diagnosis of liver disease should expect from their care :
We do have a free helpline if you think it would be helpful to speak to one of our liver specialist nurses. It is open from 10:00 - 15:00 Mon -Fri 0800 652 7330
regards
• in reply to
Thanks so much. Chat was really helpful. The hospital reacted quickly and rang him but sadly he’s not happy with me(I don’t know what he said to them) so I feel even more helpless now!
Hey, so you might not be flavor of the month in his books, but he'll thank you for it in the end. That's if he can ever remember anything of what is going on right now.
There have been many cases of HE where those partners and family members have stood by and supported their loved one through this difficult time. They are in my book, all unsung heros.
They have put up with a lot of verbal abuse, tantrums and hissy fits, none of which the patient is aware of. These can be hard, dark days. But don't give up hope and hang on in there. There is light at the end of the tunnel, it's just going to take a little time and a lot of love.
I'm so sorry for your brother and you. I suffered with HE for around 18 months prior to transplant.I can relate to your brother being upset that you intervened, as I was the same when my husband did this. Because of my condition I didn't realise how bad I'd got, in my mind, I was fine.
But in reality I was acutely ill, and without him contacting my consultant, I would have deteriorated further, which could have been life threatening.
So what I'm trying to say is, try and ignore the anger from him. It's not him, it the toxins, that are poisoning the brain. He may do and say things that hurt so much, you want to walk away. But this is an awful degenerative disease, not understood by many physicians, other than heptologists.
If and when he gets a transplant, and hopefully regains his cognitive function, he'll realise just how much you were there for him. Good luck and I hope he accepts the help he desperately needs.
I am so so sorry with what you going through .... this is the toughest part of liver disease. I can tell you my experience before my transplant. I did not know I was in it ... I thought everyone was out to get me. I was bed ridden and could not speak or move. BUT my brain was there. I was as afraid - I thought the nurses were out to get me. Saying that please tell your brother in his ear that you are there for him. That you will take care of him. I promise he will here you. I was so afraid during my HE episodes. He needs your comfort to just say I’m here I will look after you nothing will go wrong. I can say it is such a overwhelming feeling as you feel so alone and no one understands. Plus you don’t know that you are in it. I went through grey episode that the hillications we so bad. Not sure if your brother is. The problem is that no one asked me if I was in this state. I was so afraid to talk I thought if I spoke something bad would happen. Ask him really today questions on what is happening - ask quietly - maybe whisper in his hear to make him feel safe. Look at his behaviour. Maybe ask him to write it down on paper. Just so you can gauge how he is. Not just the usual doctor questions \ date of birth, where are you, why are you here etc. Plus something that is special to u. See if that can be answered. I feel I was left alone too long with out anyone knowing. I felt so so alone and frightened. Please engage and find out where your brother is. Best best of hope xoxoxoxo
I promise you are doing the right thing. He thinks he is in the right straight of mind with all his will. But sadly he is not. Don’t tell him that just encourage him to go. I promise it’s the best. Inside he is afraid and really does not know what is going on - from my experience - I am now 4 years TP. Just guide him and let the hospital staff now exactly what’s going on. Be by his side love. That’s the best you can do. Let me know if you have any furthr questions. 🌸
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Hepatic Encephalopathy 
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hepatic encephalopathy preventing a transplant
