end stage Liver Disease

[Sammi56]

my 43 year old son has been in hospital for 3 weeks with end stage liver disease. He’s extremely jaundiced, sleeps all the time and talks nonsense. He’s got a feeding tube in as he can’t eat and a saline drip. He’s had several antibiotics. Does anyone have knowledge or knows someone who has got well enough to have a transplant? The consultant says he’s too ill to get a transplant but without one he won’t survive

[Starlight79]

Good morning, I'm sorry to hear about your son, I'm 46 and was rushed to hospital 2 years ago with a massive hemorrhage, after 10 litre blood transfusion my husband was told I had a 3% survival rate due to liver failure and the next few hours were critical, I pulled through and went through many appointments to prove I was worthy of a transplant ie commitment to give up drinking through a rehab programme and eat healthy enough to ensure I would survive the transplant.... fast forward 2 years, I never needed the transplant as I'm now compensated, in the future maybe but I've worked my socks off to become the happy, healthy ( ish) person i was before I started drinking. I wish you son all the best in his journey and it is possible to turn things around, the resources are there but he has to want it and be ready to start his fight for his future, it's hard but I have no doubt you will be supporting him throughout xx

[Sammi56 in reply to Starlight79]

Thank you so much for your reply. After 2 weeks in hospital we aren’t seeing any improvement. He’s still very drowsy, confused, jaundiced and talking nonsense. What a great achievement you have made. I wish you all the best

[Starlight79 in reply to Sammi56]

Has he been prescribed or had any tests for Hepatic encephalopathy? It would explain the confusion and talking nonsense as I did the same for months until I was given medication to help. Bless him, it's an awful place for him to be in but also for you as a parent to watch. I'll be honest it took me from November to mid March to see my jaundice slowly subside and even now my bilirubin is high due to gallbladder issues and the constant need to sleep subside. I really hope you see some positive signs soon xx

[Sammi56 in reply to Starlight79]

Thank you for your reply. He’s had hepatic encephalopathy for 4 weeks now. Passed a gall stone. His bilirubins are over 500. It’s just heartbreaking. Good luck to you

[NorthLad]

Good morning.

Firstly my thoughts are with you and your son.

In Jan 2020 my Mum was also in hospital with me and I had very similar symptoms to your Son.My Mum has an idea of what you’re going through and I know how difficult this must be for you.

The first I would say is although every case is different,have they talked to you or checked on a condition called Hepatic encephalopathy. I too was talking nonsense and I was diagnosed with Hepatic encephalopathy. H.E is a condition that in the majority of cases is caused by liver failure, in a nutshell as I’m not medically qualified.but where the toxins and amonia should leave your body,they don’t,they travel to your brain and among other things cause hallucinations and behaviour changes.So it’s definitely worth asking the question. Also the British Liver Trust has a nurses led help line that may be able to help you further.

The second thing I would say is always have hope,I know it’s easier said than done but I’m 5 years on and have managed without a transplant and I’m so different from how I was.For sure life has changed but I’m still very positive and nearly 62.

Things can get better and I know it’s an old cliche but your son is definitely in the right place.

I wish you and your son well and please reach out if you think I or anyone else can be of more help to you.

[Sammi56 in reply to NorthLad]

Thank you for your reply. He’s had HE for 4 weeks now. It doesn’t seem to be getting any better. He’s got a feeding tube and having an enema every day. He’s had several antibiotics incase there is an infection. His liver is swollen and after a week of agonising pain he passed a gallstone. I’m just hoping for a miracle. I’m glad you have recovered. Good luck for the future

[NorthLad in reply to Sammi56]

Thank you.I know I’ll always be recovering and HE won’t go away but it’s much less severe now.

Both Mum and I can really understand how hard it is for you.If you go on to the British Liver Trust website and go through the Stories,have a read of Georgina’s story and I really hope that it will give you some hope as a Mum who’s son has been diagnosed with HE.🫶

[Sammi56 in reply to NorthLad]

Thank you. Over the last 13 months I’ve read everything possible. I will certainly look for Georgina’s story. All the very best

[ColinH324]

Is he on treatment for the HE? They give Lactulose and Rifaximin to treat it and can do bloods to check ammonia levels as well as an EEG to check on brain activity. Mine is mild and just adds to the fatigue and brain fog/confusion.

[Sammi56 in reply to ColinH324]

Thank you for you reply. He’s been on Rifaximin and Lactulose for 13 months. Taking bloods everyday but nothing changing. To add to it he has type 3c diabetes, which lay untreated for years and they can’t seem to control it. He seems to be insulin resistant and his pancreas isn’t working properly