concerned/last days?

My husband was diagnosed 2 yrs ago with irreversible stage 4 liver disease he's fought death 2x. Has Hep C too.The past month hes been in the hospital with ascites and drained over 3 litres this last time almost 13 litres in 2 weeks. I got him home today since the draining he looks skinny and this is what concerns me. He sleeps all day and is hard to wake up esp. has this glazed over look in his eyes. He looks like a scared rabbit. He'll be looking at me not not. It's like he's staring right past me. He speaks so soft and calm which is not him , is not easily upset. Some of his behavior patterns are different. Am I looking at death?? And is bile supposed to be bright red. Everything they drained was bright red.

[Hidden]

Good morning, we are sorry to hear your husband is so unwell. You may find our publications on Hepatic encephalopathy and cirrhosis helpful. (link below) It would be helpful for your husband to have a medical review as from what you say the changes in behaviour are new.

britishlivertrust.org.uk/pu...

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Hello stage4liverdisease, I too am sorry to hear about your husbands poor health. You say that he's recently come out of hospital after having had his tummy drained. Have they given you any information with regard to his long term prognosis, or offered any options with regard to his healthcare? It sounds as if he maybe too weak to undergo a transplant.

This must be a terrible time for you. And seeing him like this must be heartbreaking.

You'll hopefully find some comfort and advice here.

Very best wishes to you both

Richard

[Hidden in reply to Hidden]

Not only that because he left the hospital on his own 1 but readmitted by me several times. The doctors are treating him stupidly. They discharged him because he was saying and doing things inappropriate stuff to staff. Doctor said "I have to watch out for my staff" his ammonia levels were on the rise as he was discharged. Brought him back 3days later they drained 13 litres of bile. This time too I believe he shouldn't have been discharged.. he is not well. Looks like death. And why don't specialist come into the hospital to deal with patients?

[Teri8672 in reply to Hidden]

Usually they put them on home health if there’s nothing they can do. It’s a horrible thing to deal with someone passing right in front of you but truly if you can handle it you should ask his insurance for a home care nurse.

[mncold in reply to Hidden]

Hi stage4liverdisease,

It sounds as if you might want to try a different hospital and staff. There may be no change in treatment either medical or personal, but you may get more information in a different setting.

My very best wishes to you and your husband.

Mary

[LAJ123]

Hi,

It might be of some comfort for you to know that all of the symptoms you describe, fitted me pretty well during my time between diagnosis and a very successful transplant.

I had hepatic encephalopathy (HE) and profound muscle mass loss during the fourteen months of hoping that my liver would recover. There were hospital stays that totalled 80 nights during 2015, mostly with HE and a serious bacterial infection of the ascites fluid (Spontaneous bacterial Peritonitis) Despite all of this, with the support of the nursing, medical and dietician team, I managed to become strong enough to be listed for transplant.

Follow the advice of Trust 5 and find out as much as you can about his illness, but importantly ask for an appointment with his consultant so you can get an accurate picture of his health and what the future may hold.

You say he has the hepatitis C virus, but you don't say if he has been given any treatment. You should be aware that with the new drugs available, Hep C has an extremely high rate of successful treatment.

Very important to remember that it is very hard work, physically and emotionally caring for someone with serious liver disease. so don't forget to make sure you get time and help for your needs as well as your husband.

Take care,

Jim

[Melita17 in reply to LAJ123]

Hi Laj123, can you tell me where you had the transplant. My brother has liver cancer and is on a new chemo drug. He's been told he has less than a year. Thanks.

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So all doctor said was he'll likely have to be regularly drained and be at risk of stomach bleeding..

to take his lactulose. He is so sick looking can eat however he smokes med. MJ. But I feel helpless why don't doctors tell you " he's only got so much time or a lot of life." Don't know who to go to. No fam help. Work and have to take care of home. I feel like running away and leaving. This is so hard!! There is no way he'd go into Care he'd die alone in his home. At least if he'd be in HE again I could put him in Care. Can't even find a good GP. Do nurses come into the home too.?

[Teri8672 in reply to Hidden]

Yes nurses do come to the home ask his dr for home health and they also give a bed a toilet wheelchair and ect. Hospice is what it is called it helps tremendously gives you a piece of mind. They didn’t offer transplant?

[Hidden]

I'm sorry to say I'm out of my depth here.

I would have thought that in your husbands case, if the brain damage caused by the hepatic encephalopathy was so server, then surely this could be classed as being a psychiatric problem. He could then be admitted into a psychiatric ward and sectioned under the mental health act. It could also be said, that when he's suffering with an episode, he is a danger to himself and to others. Specialist trained staff who work with psychiatric patients would be far better placed to treat this poor man. After all his outbursts and mood swings are chemically driven, and he most likely is unaware of what he's doing.

Hepatic Encephalopathy, can be permanent, depending upon the amount of damage caused. He really needs to be assessed by a gastroenterologist/hepatologist with a referral to see a mental health specialist. Are you in a large city, or is he being treated in a local hospital?

I'd be interested to hear what others think about about this problem.

[elle-boop]

Hi, it’s sounds very like he’s suffering from encephalopathy. The lactulose is supposed to help with the ammonia levels that cause this problem. This stage of liver disease is very very difficult. Is he being seen by a hepatologist? Is he on the transplant list? All you have described is quite typical of this stage of the disease. I’m sorry your going through such a bad time, you will be very stressed and the unusual behaviour he’s exhibiting is frightening for you I’m sure. E

[elle-boop]

Further to above. You should be asking for assistance from a social worker who could organise a care package so that you have some support. If you are his career night and day then you can’t continue on your own. There is more help out there, I’m sure of it. A gp can make a referral to the social work department for you and class it as urgent. The other thing is that there may be other medications that are available for encephalopathy, if the lactulose isn’t working or he can’t keep it down etc. The mood and behaviour changes will be due to high levels of ammonia that get into the blood stream because of the liver failing. He will be totally unaware and unable to control this. He may even be very frightened by what he thinks he can see or is going on around him. This really does need some professional intervention soon.

No doctor I know will tell you if and when someone is dying etc unless it’s blatantly hopeless. Let’s hope if he’s seen by the right people soon he and you can get some relief. E

[Teri8672]

Is he a drinker and how didn’t his doctors not know he had a liver issue? My dad had that same thing happen to him at his last 30 days but he was always told by his dr he has liver failure. He passed away in 30 days from complete liver failure from cerosis of the liver caused by alcohol

[Hidden]

Thank you to all for replying just being able to share with understanding people is SO comforting. My husband doesn't drink since a year ago however the doctor who discharged him said my husband was off his unit for a long time and came back smelling like alcohol but I KNOW my husband didnt drink..doc had his story mixed up.. He smelt like MJ. We have access to city an be away (live in a small town) I believe my husband has some permanent HE, and he was told about transplant however the specialist told us at our initial visit that Native people never get transplants! Asked why he said he didn't know. I'm back to square 1 and that's to find another GP the one he has is not good he's hardly around. So for now my husband remains bed bound hardly able to move often confused anticipating the next bout of Acites. doctor said that's the future ..to be drained regularly and is at risk of a bleeding stomach..just to mention when He he was drained of almost 13 litres it was bright red bile? I thought bile was yellow. He hears things gets severe cramps, in pain...I just wonder how long he will last. Each story is different.. but I know with stage 4liver disease (irreversible) without chance of a transplant there is only one ending...

[mncold in reply to Hidden]

Hi again,

My husband has cirrhosis so I may understand how difficult it is when you feel his doctor is not paying attention.

We are in the US so there may some differences in care, but I don't understand either what you mean by Native peope or why that wouldl make a difference in transplant options. It sounds as if you may need to get him to a different hospital with different caretakers quickly, if that is at all possible for you.

I wish you both the best

Mary

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OH my God this is a fricken rollercoaster. My husband had yet the 101 hospital stay AGAIN 4 days ago. This time he was unconscious, unresponsive and eyes in the back of his head only whites showing. I thought it was the end for sure. Hospital staff informed me of his E of Life decisions and theyde just make him as comfortable as possible until he leaves. AMAZINGLY he came to after MANY faithful prayers and I truly do believe in prayers. However hes back at home suffering with one thing or another. Yday was terrible PAINFUL SHOULDER and bad taste in his mouth, short of breath AGAIN. Im wondering why he was not seen by specialists , why his bile was bright red. Can HE become permanent? HE did have an episode of HE for 6months at which they expected him to die. He came out of it. Thats why i say its a rollercoaster ride. I try to compare my story to find out more but each story Is SO DIFFERENT..how long does he have?? I wish i could find out exactly how much functioning his liver has? Thank you for your replies and i wish i could admit him to a Care home but as long as hes mentally capable theres not much i can do.. Also is it normal to be given human blood? I recd a letter stating that and they did not consult me nor tell me what for.