My brother was diagnosed with cirrhosis about a year ago and his doctor told him he needs a new liver. He told me about it about 8 weeks ago (we live 1500 miles apart and I do not see him very often). During the last 8 weeks, he has been in and out of the hospital because he keeps filling up with fluid. Yesterday he was taken by ambulance after I sent the police to his house to check on him because he wasn't answering his phone. They found him in a very confused and combative state. I spoke to his nurse this morning and they are going to drain his fluid again, but he is still very confused and combative. We have been trying to get him on a liver transplant list but he is not on one yet. I'm worried that he isn't going to live long enough to get a transplant. Has anyone gone through a similar experience? How much longer does he have? I feel so helpless.
End Stage Cirrhosis - how long?
Question posted by EM2014 on 5 Nov 2014
Last updated on 2 October 2021 by 1987ED
It has been a couple of months since you last posted. What ended up happening with your brother.
This is my first time posting on this forum. I am feeling very lost myself. My dadhashad cirrhosisfor many years. Now he has end stage liver failure and has been suffering with complications severely in the past couple months...
My mom and I admitted him into the hospital just after christmas of 2014.. his stomach was full of fluid, 4 litres were drained. He is jaindiced like crazy, has zero energy, no appetite, on top of that is an insuline dependent diabetic, had several blood transfusions... He had blood in his stool as well. They had him drinking lactulose to help with constipation and lower ammonium levels.. He did have a couple of ok days where we thought he might come around again but its just been a steady decline in health. His HE hasbeen getting worse and worse, behaving bizzarely and very irritable. He has been in hospital for almost a month now.
They released him after 3 weeks and that was a HUGE mistake. Took him home and he is so confused and mentally impaired now that my poor mom just cant look after him. She is a basket case. He wont do his blood sugar monitoring anymore or do his own insulin. She had to call the ambulance to take himback to thehospital. I just dont know how much time he has left. Doctor isnt telling us. He is under the care of a GI specialist... He told us his liver is completely shot but won't say how much time he has left. It is so terrible and upsetting to see a loved one deteriorate like this. I mean, how long will he be able to stay in hospital for?? He certainly can't come home. He would needa 24 hour nurse! I feel like he isnt my dad anymore, he will never be the same. I only hope the good lord has mercy on him and just take him. His quality of life is and will be very poor.
I forgot to mention he was an alcoholic all of his life. The reason he has diabetes is because he messed up his pancreas from the booze years ago. He hasn't drank in 2 months but too little too late.
What happens next? The lactulose isnt helping anymore and his mental state is getting worse by the day. They have to restrain him in the hospital bed and drug him up to calm him down. I wouldnt wish this on my worst enemy. Feeling lost and helpless.
After my brother got to that stage he lasted another year , he was mainly in the hospital 3-4 weeks at a time due to infections and uncontrollably vomiting of blood due to veracies bursting then needing blood transfusions
My fiance has end stages of cirrhosis. He has to be drained ever 2 to 3 weeks and his ammonia was really high to the point of passing out and then slipping into a coma for several days. Now he's doing better and as your have already learned from another post, Lactulose and Xifanax are important medications in preventing the high ammonia levels which cause the confusion and can lead to passing out or comas. In case he ever experiences any bleeding (watch for dark color stool or dark tarry vomiting) be sure and ask for an endoscopy to verify if there's enlarged veins that may be bleeding in the esophagus and if this ever occurs you need to discuss "banding" with the doctor. My fiance had this done as well. It saved his life. He had it done again about 1 month after getting out of the hospital as well as a simple out-patient procedure. These are things that need to be have eye kept on when in the end stages of liver disease.
They are important things than can provide more time with your loved one. I hope this helps. God bless you and your family. I pray for anyone going through what my fiance and I are going through. It's a scary and long road. Best wishes.
My dad, 64, just passed away in May from liver disease. He lived with me for the past 8 years. He went through the same problems of bloating and confusion as your brother is now. I would say that he had confusion problems for a couple of years before he passed away. He developed the bloating problems about a year before his death. Having lived with him and cared for him I know that some of his episodes were caused by poor consistency with taking his medicine, lactilose and xifaxan, that are critical for keeping the ammonia levels down. I eventually took full control of dispensing his medicine but even then there were times he would become too confused and would have to be taken to the hospital. I would say that towards the end he would have to be taken to the hospital more than before and the doctors all agreed it was time for hospice. He came home and lasted about two weeks before dying with us here.
He was offered to try out for the transplant list but they found liver cancer during the testing which kept him off of the list. I would say if your brother is offered to do a transplant then don't delay because things don't get any better and his condition can change fast. I would also recommend that someone check on him daily if he lives alone because the confused state can lead to a coma if not addressed quickly enough. Once in a coma most patients don't recover. When the person is confused they cannot take care of themselves at all. I hope this provides some insight into the seriousness and diligence required to care for someone in the late stages of liver failure. Just take a deep breath, accept things as they are and be aggressive in anything that is within your control. It would be good to have your brother authorize you to speak to his liver dr so that you can be more informed about his current condition and help in any way you can.
I went through what you are going through with my husband. Yes he has ensaphalopathy. It is a good thing he is in the hospital. They will give him something to help with his confusion. His amonia levels are high that is what causes the confusion and being combative. It is hard to see someone go through that. I also wanted to give half my liver to my husband but he did not want to take it because the transplant team said that i would possibly go through some bad complications. They said the one who gives is more at risk than the one who receives. He definitely needs to get on the list. How much longer only the doctors can say. It is not going to be easy just be there for him.
What he is experiencing is encephalopathy. His brain is effected because his liver isn't taking toxins out of his body. Have you considered being tested to see if you could donate part of a liver to him?
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