Sleep

[Bethany1]

Hi there, I have recently joined this site because of my Father. He is 72 and has Chronic Liver Chlorosis. He has gone down hill extremely fast, suddenly 8 weeks ago, I had to take him to hospital as I thought he had dementia and he had a kidney infection due to this problem with his liver. He has been told, due to his age and other existing medical conditions he cannot have a transplant. He would like to die I think.. He has given up.. He says he feels so terribly ill, awake all night sleeping all day.. Feels like he has flu permanently.. He can no longer drive or go out. He is taking Questran for the intense itching which makes him terribly sick and lactulose I presume for H.E. even though he hasn't been told this, I researched it on the Internet.. He struggles to eat so I have given him guidance on diet and  told him to take Complan as he is so terribly thin and wasting away.. Is this end stage liver disease?.. With him saying the things he says and feeling so terribly unwell, should I be taking him to hospital? I just don't know how to help him... Julia 

[Bolly]

Can you ask his GP if they can help with arranging palliative care at home or you could contact your local hospice and see if they would take your father in?

[White-feather]

I feel really sorry for you both. We are all here to help in which ever way we can. Try calling 111 and explain it all to them, including asking should you take him to hospital. It will then be on record about his decrease in health. Drs etc only get a snap shot of every individual, it is you that can see the full picture and that needs relaying to someone. Calling 111 will be another angle from which you can get advise.

I hope this helps.

Keep in touch

🍀

[Bethany1]

Is he at the end stage of liver disease then? They haven't said how long he has left.. He keeps having his bloods checked at the doctors but they haven't said anything... Why doesn't anyone say anything and explain things to us? 

[AyrshireK]

Hi Bethany, sorry to hear your dad is so poorly.  Have you spoken to your Dad's doctor directly and asked the question as to how poorly is Dad?  Ask them outright is he displaying end stage symptoms?  Along with the intense itching is Dad jaundiced?  If so then the itching (pruritus) is due to bilirubin build up and this would be considered a late stage (but not necessarily end stage symptom).

End stage symptoms / liver decompensation would be things like :- ascites (fluid build up in tummy), oedema (fluid build up in lower limbs), bleeding problems, varices in oesophagus and hepatic encephalopathy.  Eventually other organs will begin to struggle due to the knock on effect of a failing liver so hepatorenal syndrome might begin where the kidneys also begin to fail.

The sleep reversal and fatigue are fairly usual cirrhosis symptoms along with weight and muscle loss but arn't necessarily end stage either.

I think you need to push your dad's medics for some definitive answers although they might not be able to give you any.  It's a case of how long is a peice of string in many cases.

Hope you get some answers and more appropriate treatment for your Dad,

Katie

If you haven't already seen it the British Liver Trust has a very thorough page all about the symptoms of cirrhosis at :- britishlivertrust.org.uk/li...  When my hubby was first diagnosed I found it invaluable.

[Bethany1]

I'm not sure if he's jaundiced.. We are thinking of taking him to A&E though, as he is just so terribly ill and we feel so helpless.. Perhaps we can get some direct answers then. Thank you ever so much Katie.. 

[angse]

Hi Bethany so sorry your dad and yourself going through all this, I think it would be best to really talk to doctors and ask direct questions, and expect them to also be honest and let you know what is going on with your dad who is clearly suffering, as previously mentioned 111 and A+E is also beneficial good luck. Annette

[TonyParsons]

Hi Might be worthwhile seeing Herbalist. All the best

[PCBnPBC]

Clearly Drs. are best placed to answer your questions!

but read the comments above to get ideas for questions that you need to be asking, it is too easy for a Dr. to write off someone they know is very ill, it is your job to fight!

H.E. and dementia are often confused together (does not mean dementia is not present)

Drs. (generally) have no understanding of H.E (clearly a few do, and some are close to ignorant on the subject. )

From what you say IF H.E. is part of the problem ask for Refaximin which can help in many cases (helped me a lot)

LFTs are also of interest, what level are ALT ALP and Bilirubin (u can see levels on Liver Function blood Tests (LFT) these give a general idea how far liver damage has progressed.

Keep your posts short (unlike mine!) and succinct with some details and people here will help you "read" the results.

sympathies.

[Rachel299]

Sorry to hear you're father feels.so poorly. My dad has several problems which are leading to liver damage and we have had to look on the Internet for an idea of how bad it is. We find thst the hospital rarely explain clearly and give us no idea of what stage we are at. However last time we went for a check up we asked if it would be possible to speak to the professor and we have now made a bit of progress, they have arranged another appointment and hopefully we will be told fully this time. Be persistent and ask for clarification. Also what the doctors (and dietitian in our case) rarely tell you is that there are things you can do to help, other than the horrid medicines they prescribe. This is why we are trying the raw juicing as dad can't digest well now so the juices are easier for his body to soak some nutrients. Low sodium and try to avoid certain foods like meat as the ammonia builds up as a waste product which can make the H E and confusion worse. Dad decided not to take the medicine to stop him itching as the side effects were worse than the itching. I've heard that antihistamines can work but hes not tried this yet. 

It's definitely worth asking for clarification though and his age should not mean they merely leave him to suffer, he still needs a quality of life so don't give up being persistent with the doctors, I completely understand how it feels but from our experience it pays to ask questions as we have a nice professor who seems keen now to try to help more than the previous doctors. You can always ask for a second opinion I hope this helps a bit. Stay strong x 

[Bethany1 in reply to Rachel299]

Hi there! Thank you for your lovely kind words and advice..people have been so kind and helpful..  We did in fact take Dad to A&E on Saturday evening as he thought he was dieing, where he felt that unwell. He could hardly walk or speak.. They medical team have now answered many of our unanswered questions as I grilled them about Dad's condition. He has been given tablets for the intense itching and soothing cream, antibiotics,  can't remember the name though for H.E. to take twice daily.. He is having a scan tomw morning as they suspect his pancreas is leaking and need to rule out cancer due to his extreme weight/muscle loss.. He is intravenously being pumped with various fluids as one of his blood work results has come back extremely low, and they are puzzled as to why..  He has really brightened up since taking the medications though, it's amazing to see.. They have said his Child Pugh Score (Hope that's right) is a B. I am so pleased that I asked for help on this site as that is what prompted me to take Dad to A&E, I just didn't know what to do.. This is such an awful illness..  

[White-feather in reply to Bethany1]

That's brilliant news! Must have taken you a lot of courage. It is hard to decide what to do when you see your loved one like that. You sound much more positive and somewhat relieved. Well done you! 🌟

Really pleased for you. Thanks got letting us know!

🍀

[Estiebargle]

Hi Bethany,

That sounds really overwhelming for your family. Just take deep breaths and remember to look after yourself. I nursed my mother through kidney cancer & held her as she died. However my mothers illness was brief, liver disease (even advanced liver disease) can ebb & flow with periods of respite. 

Every lovely person in this community has a different story and experience. I liked that you had said 'we' are taking him to A&E. You cannot do this alone and you must look after yourself so you can stay well mentally & physically  to  be present for your dad. 

Good luck to you and your family at this frightening and tender time. 

[Rachel299]

This is a free course on liver disease starting next week. Might be helpful. futurelearn.com/courses/liv...