A quick update

[Bs1524]

Hi all hope everyone ok I have been without internet since Sunday so could post before. My husband ended up in Lincoln hospital last week he was very confused couldn’t work out how to put a t shirt on and had a couple of falls. Well they scanned his tummy but said nothing was acute and sent him out again. However it has prompted a follow up with the liver team as he should have had contact from the nurse specialist two weeks ago so this week we have had a call and the ball is now rolling there are blood test that the gp is to do and we can expect an appointment around the end of September. Meanwhile I was woken at 4am by a confused and naked husband trying to put a t shirt on it took me a while to sort him out and then this morning he fell again. I have been very strict with him and have been pouring lactulose down him and he is starting to become clearer.

[Hidden]

So very sorry to hear of these troubles. I am watching my husband experience the same symptoms lately and have been wondering myself at what point I get him to the hospital. There’s been so little medical guidance for the symptoms associated with his decompensated alcoholic cirrhosis. I’m glad the lactolose is helping with your husband’s symptoms. I’m not really sure if there is any other treatment for HE, at least here in the states. Please keep us posted on how you both are getting along.

❤️

[Bs1524 in reply to Hidden]

I know exactly what you mean what makes me cross is they ask me to report changes then ignore me when I do. Last week the GP said that the hospital would give him an injection (I can’t remember what) but they didn’t. The doctor there said from his notes he has some encephalopathy so this is usual I had trouble making him understand that my husband may have had some muddled thinking etc but this was different, he was rambling, did not know how to dress himself and was having falls they just looked at me.

[Heartbr0ken]

Hello there,

My partner was diagnosed with decompensated liver a few weeks ago and we received very little information from the hospital. My partner was suffering from what I thought was HE (up all night, wandering around) and I gave him lots of lactulose which reduced some of the confusion but after calling paramedics as he was very sleepy, his sugar levels were checked and were through the roof, over 70. Has your hubby’s sugar levels been checked? My partner is currently back in hospital having this treated as well as a chest infection treated. Wishing you both well xx 😊

[mattymoo33]

Hi there, definitely keep up the lactulose. I'm sure you know HE can get very serious very quickly, although the sufferer often doesn't recognise that their behaviour has changed.

Have you contacted your liver team?

Please don't wait.🌈

[Bs1524 in reply to mattymoo33]

Hi, we have only been given a contact for the liver team this this week so not yet my pouring lactulose down him seems to be doing the trick although he doesn’t like it and complains that it is his bottom that’s gonna be sore. I just say better a sore bum then a damaged brain but ai am having to be really stern with him. I might be looking at a whole new career

[Hidden]

Hi

I hope you are doing a little better now HE is a pig. I can remember not being able to put a shirt on, the first sign for me was when my mobile phone stop working or I thought it did!

Have they put him on rifaximin, the lactulose at least three time a day and rifaximin made me more stable

David

[Hidden]

Good morning,

Sorry to hear of your experiences.

I have included a link to the British Liver Trust information on Hepatic Encephalopathy (HE) and the HE passport which may help on a day to day basis to identify signs of deterioration.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/he...

It may be worth asking the liver nurse specialist or consultant to work out a plan of care with you .

Take care of yourself too,

Trust9

[Bs1524 in reply to Hidden]

Thanks, when I spoke to the nurse specialist she said a care plan would be worked out which is a huge relief for me as since May 2019 it has been left to me to monitor his condition I am not medically trained and I have been so worried. The lockdown was a godsend as it means I am working from home all the time and have been able to keep an eye on him.

[Bs1524]

Hi David,

He is on Rifaximin right now I am giving him lactulose whenever I can as I said to Matty I would rather he had a sore nether region then a damaged brain although I think my husband would disagree and want to know why we can’t use my bum next time 😂