Decompensated Cirrhosis

[JenClarkey]

Hi, sorry if this is a bit long winded I am just looking for some support and guidance. My uncle (61) was diagnosed with decompensated cirrhosis at the beginning of feb, this was through an A&E admission as he had considerable ascites. He was in for 6 days and sent home with spironolactone, thiamine and a vitamin. Two week later was readmitted because his legs had ballooned and were beginning to blister, they drained 8 litres of fluid from his stomach and added furosemide when he was sent home. Again two week later we were back at A&E as he was confused, felt highly anxious and couldn’t stop shaking. This resolved after 24 hours and he was sent home with lactulose. The cause of this is heavy drinking for most of his life, which thankfully he has stopped. He is feeling much better but is very thin and malnourished, and is experiencing extreme itching in his legs and feet and nosebleeds and is unable to sleep at night but cat naps throughout the day. His last admission was 9 weeks ago and he has had one telephone apt since then but other than that has had no follow up care. I am desperately trying to get him to make an apt with the GP for a check up but he seems reluctant. He is convinced that as he is feeling better than he was and isn’t drinking his liver is fixing itself and there is no need for me to worry. He has had no guidance about diet, fluid restriction and no one has really spoke to him about the severity of the situation he is in (or they may have and he has chosen not to listen) I have found out everything I know from looking up the things that were on his discharge letters from hospital. He has portal Hypertension also. I visit every day or two and help with household tasks and shopping etc. I understand that in comparison to how he was in feb/March this year he is a 100 times better but he is not well still and I don’t know what to do. He is unsteady in his feet and still has brain fog at times. Any advice would be amazing. Thank you.

[golly123]

He needs to see a gp and be under the care of a hepatic consultant. The brain fog may be hepatic encephalopathy which I was put on lactulose for. 111 do give advice. Maybe ring them and see what they say. Hope everything goes OK for him. Best wishes Golly

[JenClarkey in reply to golly123]

I’ll try 111 for advice, I hadn’t thought of that! thank you, I just feel as though he has just been left to sort himself out and as he isn’t actively seeking or wanting treatment he is getting overlooked.

[redpoint72]

Hi love. As golly has already mentioned, he really needs to see his gp to start with.

Was uncle not appointed a gastro or hep consultant while in hospital to oversee him?.

Best thing is that the drinking has ceased, so that's good.

He sounds as though he needs to see a liver dietician, they can tailor a diet to suit your uncle.....thats really quite important,but thats done for each individual, as they know your uncle's medical background.

Was he not offered any protein shakes such as ensure plus, or fortisip. I was given 3-4 of those when I was at your uncle's stage,to take each day,as I had no muscle at all.

Were there phone numbers on your uncle's discharge letters?. What i think is as alot of us have found is that we have to politely push to get some response from various departments at the hospital......I have .would uncle let you go with him to appointments? That could be helpful for both of you,only an idea.

Uncle is not well to be experiencing ascites,and decompensated status. The itching is a far as I know,is usually high bilirubin levels in the blood. Doctors can prescribe something to try and help,but it can be hit and miss if it works,sorry!.

I wish your uncle well.

My best.Chris

[JenClarkey in reply to redpoint72]

Thanks for your reply, I do try to attend appointments with him but the only time he has really seen a doctor is whilst he has been in hospital and they do the rounds before visiting hours so I wasn’t able to be there. He said the heptologist he saw said it ‘could be months, could be years’ and he has taken that as how long it will take for his liver to be back to normal but I’m just worried that was his life expectancy. He’s been given fortisip when he has been admitted but hasn’t any prescribed and the chemist said it’s only available on prescription. This is another reason I’m pushing him to see the GP as he weighs 7stone 4lb which is tiny. He has said he will make an appointment on Friday but he has been promising this for weeks and keeps finding reasons he hasn’t been able to make said appointment. He said he is eating plenty but it’s not the healthiest diet, I’ve spoken to him about salt restricted diet but he says he doesn’t add salt to his food so that’s not a worry, I’m sure it isn’t as simple as that? His telephone apt was with a gastro doctor who said he would chase up an endoscopy but didn’t seem overly concerned with his situation. I’m trying to be politely pushy but it’s hard when he doesn’t believe the diagnosis to be a serious issue. Thanks for the advice, I will keep nagging him about the GP apt and see if he will let me go with him. From my perspective as it’s alcohol related they don’t seem to be concerned.

[redpoint72 in reply to JenClarkey]

Right love... yes it really is a serious issue,im assuming the gastro doctor would have said that. As for the how long,it could have been approx life expectancy, although doctors can't predict that,or the amount of time to go from decompensated to compensated, where the liver can do most of its jobs it has to do. No the diet is not as straightforward as restricted salt intake,im only speaking generally, usually high protein diet.....but this is where you need to speak with a liver dietician ideally,but if your uncle isn't overly fussed about doing to much about it,that does make it more difficult for you.Yes they will usually perform an endoscopy to check for varices. The responses from medics,if its alcohol related can be varied at times.....I've experienced it at times.

The blt has some really useful pages on all liver disease, have a look.

You may find it beneficial to speak to the blt nurses,there great,can answer any questions you may have.

Take care.

Chris.

[BritishLiverTrust3 Administrator British Liver Trust]

Dear JenClarkey,

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust