liver cirrhosis ( very new to this )

[TheBusyMum]

Hiya, I apologise in advance for my lack of knowledge but this is very new.

My dad has recently been diagnosed with decompensated liver disease cirrhosis. It all came to light the beginning of this year he’s been struggling for some time with different symptoms but it all came to a head just after the new year. My dad was admitted to hospital with ascites and fluid on the lungs ( he was in hospital for a week but they had no beds so he was being treated in a waiting area ) my dad was discharged which was an unsafe discharge ( I believe ) as he was still terribly poorly but sent home with mum to take care of him both of them had no idea what to do.

I phoned British liver trust and explained what was happened and he had the start of hepatic Encephalopathy and they told me all the right things to say to the doctors which the doctor dismissed and put his symptoms down to “anxiety” fast forward a week my dad had an appointment with the hepatologist who admitted him straight away and he deteriorated to start, his kidney function went down to 17% and his HE was worrying as he thought that people were watching him/ listening to him etc he was delusional and hallucinating. After a week he was then moved to the correct ward and the delusional and hallucinations have lessened but still there. The hospital are not sure if it’s an infection that’s caused this or if it’s alcohol related ( my dad hasn’t touched alcohol since he found out ) My dad was discharged Wednesday night just gone and due to not being able to walk right now an ambulance was called before he stepped foot in the door due to falling and hitting his head hard enough to cause two big bumps and deep cuts. My dad went back to A&E via ambulance who said it was an unsafe discharge and he needs to be assessed by the OT.

my dad came home Thursday morning via an ambulance with support getting in the house and the OT came out to assess what he needed.

My dad is on rifaximin, lactolus , 2 types of diuretics , has been receiving albumin and a couple others I’m not sure of the names I’m sorry.

my concerns are my dad isn’t eating a great deal as it’s making him feel quite sick he’s not sleeping either and both of these things have been the same since December 2024. The doctors are aware of the lack of food and the lack of sleep but don’t seem to be all that bothered. My mums really trying to get him to eat but it’s hard for him to manage he’s trying little bits like crackers or he’ll have 1 ensure drink. He’s really weak at the moment and I’m not sure if that’s due to the liver disease or the lack of nutrition . He’s meant to have a dietitian but this hasn’t happened yet and I will be contacting someone tomorrow to see if we can get that in place. My dad is still showing signs of confusing he’s not entirely sure what day it is but he can hold a conversation but seems to get quite distressed while speaking.

I guess I’m looking for hope as well as advice.

we as a family are clueless as what to expect. My dad has an appointment on the 27th to review him.

I’m sorry this is quite a long read I’m just so lost at the moment.

thank you.

[McEwan1962]

hi, sorry to hear about your dad. It’s certainly overwhelming, for him and all the family. I started to get ill towards the end of 2018, which led to me having hospital stays, and diagnosed with a decompensated liver . It sounds like the hepatology team are doing a good job, however they do tend to forget to use plain English so don’t be afraid to ask what anything means and write down anything you need to ask or want to know. Often the nurses are really good at explaining things.

The Rifaxamin and the lactulose will be to help with the HE symptoms. The diuretics (probably furosemide and spironolactone ) are to help with the fluid retention and he is probably on a fluid restriction. I’m not sure about the nausea, I’m sure they could probably give him something to help with that as it is really important he gets plenty of protein into him. The high cal drinks can be hit and miss, so anything he fancies eating he should have it. I used to need to eat during the night, biscuits, yoghurt, cheese and that’s fine too. It might be easier with the nausea. The dietitians are usually good and really helpful to talk to.

In the interim if you feel he needs to be seen find out the email address and phone number of the Hepatology Secretaries. They can usually help. I expect at the next appointment they will want to do some more tests as they will be able to Come up with a plan for the way forward.

You will find plenty of support here and there are no silly questions 🫂 Lesley

[TheBusyMum in reply to McEwan1962]

Thank you for your reply.

I will contact the secretary tomorrow and see if she can help advise if he can take anti sickness tablets.

I’m hoping I can get somewhere with a dietitian tomorrow.

Just struggling to see him so unwell and my mums getting everything “ he fancies” or wants and then moments later he won’t want it.

Thank you again I really do appreciate it.

[QuietButBold in reply to TheBusyMum]

Welcome TheBusyMum.

If you are in England, you might find your local area Patient Advice and Liaison Service (PALS) office helpful in tracking down and establishing contact with key people in Hospital teams (I have found them invaluable - particularly when establishing contact with a new team or when a team said they were going to respond but hadn't done so):

nhs.uk/nhs-services/hospita...

Best wishes.

[McEwan1962 in reply to TheBusyMum]

You are very welcome🫂. It’s also really important for your mum and yourselves to try and have some self care time. Apart from the anxiety and worry for you all you may be getting burn out.

Also sometimes, and I’m sure it’s just because they are so busy, you may need to be quite persistent with the medical professionals. They are getting pulled in a lot of different directions.

Please keep sharing what you want with us. We have mostly been there, or supporting someone who has been there🫂

[NorthLad]

Hello,firstly there is no need to apologise. I know how frightening this will be for you and your Mum and your dad.

In January 5years ago I was admitted to hospital and diagnosed with decompensated liver,ascites and hepatic encephalopathy.My mum was with me at the time and although neither she nor I knew it at the time,she had also witnessed the onset of HE in the December. My behaviour was awful ,I was hallucinating,falling and also not eating and very sleepy.

On being discharged after a 4 week stay I had very similar symptoms to your Dad.

I was prescribed a drink called Fortisips which came in different flavours . It’s only a small drink and comes with a straw and I do remember it helped.That may be worth pursuing with his doctor.I too found I was eating lots of sweet stuff and apparently that is quite common if you cease drinking alcohol,as was the case for me.

Walking was an issue for quite some time and I used a stick to help me.

I would definitely keep asking questions to his Doctor,the heptology nurses and the consultant.As was said before,no questions are silly questions at all.I know how difficult this can be for you all, but in any of the things that I do now I will always say “Please hang on to hope and try and stay positive because things can get better. “ I know it may not seem it right now but they can.

HE is often misunderstood by health professionals at all levels but that’s changing now.On their website the British liver trust have an updated information section about HE and there is also a monthly on line support group specifically for those with HE and those caring for those who have HE. Both I and my Mum often attend them and you are more than welcome to join. There is also a facebook group Hepatic Encephalopathy Support and Awareness Group that may also be of help to you.

Please reach out at any time and I wish you,your Dad and your Mum well.

Take care 🫶

[Breakfastbabe]

I am so sorry to hear about your situation. My husband was the same about eating and still can be if he has a lot of fluid in his stomach. When he was in hospital the liver nurse explained that the liver is the body's battery and it recharges overnight. Therefore it is very important to have a small carbohydrate snack before bedtime if you are losing weight and need to put it back on. The BLT has a list of suggested snacks on their website. Her explanation seemed to do the trick for my husband (being an ex mechanic I suppose). It is very scary seeing your loved one battling liver disease but there is hope and a lot of useful information and support on here.One thing I found useful is to keep a file of all hospital trips, discharges, GP notes, test results and up to date medication as each time we have gone to the hospital or GP they haven't necessarily had the full picture. I hope you can get the answers you are looking for and take care of yourselves.