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Hi All, I've been away for a while. My dad has gotten worse. Just finished a stay in the hospital because his bilirubin numbers are way up. They are climbing daily. Everything else looks fine, but that damn bilirubin just won't stabilize. So this is the end. Dr says there's nothing more they can do. My question is, has anyone had to deal with end stage liver disease? I was told it would be at least a few months, that he would get more and more tired and weak, then stop eating... what about pain? I didn't ask about pain. Is it agonizing? I thought I was ready for this, tried to prepare. He doesn't know. It's better that way. His loose ends are tied up, no reason to have him give up when he has a couple of months to enjoy what's left. I don't like surprises. Does anyone know how it ends? Honest answers. I need to prepare. Thank you all so much.

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My husband was diagnosed with liver cirrhosis on October 14, 2015. He's been in and out of the hospital and I'm feeling so helpless. I keep telling myself he's going to get better, and I know I'm just fooling myself.. He was in the hospital for Hepatic Encephalopathy for a week. And then 3 days later he went back in again for the same thing, this time he not responding. Doctors were able to bring down his ammonia level. He is home, but all he does is sleep and doesn't really want to eat. I give him his lactolos and his other medications. He's had a fluids drained like a couple of months ago on his lungs. Has and enlarged spleen. I'm so scared and worried because I don't know what to expect from this disease.. I cry each time I see him this way.
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Hello my Mam had terminal liver cancer she lasted nine months after being diagnosed. In the days leading up to her death she was shopping cleaning up etc she just deteriorated one morning saying random things and losing control of her bowels. We rang doctor and he advised hospital within 48 hours of hospital she passed away peacefully aged 57 she never moaned or let her illness get to her
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My husband is dying of stage 4 cirrhosis he has blood all over our sheets he has swelling in his abdomen he had a fibroscan score of 48 normal is 10 it is very scary.. he has started the harvoni and ribavirin treatment for his hepatitis C he will not be on the transplant list as he has maJor heart problems a pacemaker defibrillator and heart valve he Has become very awnery and I hate it when he goes incoherent with the hepatic encephalopathy he looks like he's staring at the ceiling all the time in to space like nobody's there I call it the little bird look it takes so much time once 45 minutes just to get him in from the recliner into bed he gets arguing and combative I'm hanging in there I need four surgeries myself a hip replacement and two knee Replacements but he obviously can't care for me so I will care for him we are common law married we've been together 22 years it's a lot for a woman to go through who never got a marriage or a diamond ring but I love him and that's what you do when you love somebody you stand by them good luck to all of you
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God bless you! And I will enjoy my time with him. And try to stay strong.
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Also, all the symptoms you have described are either already present or starting with my dad. Fluid is his main comfort problem right now. Trying to get rid of it with medication. Doubling all his doses. As you said, it happens without warning. The doctor told me the same. I'm conflicted today because I had a out of state 3 day trip planned from February and I don't know if I should go. My daughter volunteered to stay with him, but I feel so guilty leaving. With you saying, it happens out of nowhere, I think I realize I need to stay with him
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Thank you! I'm so sorry about your wife. I will keep you in my prayers. And will spend these last days with my dad. He is deteriorating and it breaks my heart not being able to do anything for him
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Im so sorry. I just lost my wife to liver failure. IF IT ENDS UP WHERE HIS LIVER IS GOING TO FAIL.....
I have to say that it will come out of nowhere... atleast you know its going to happen. .. maybe my experiences can give you some idea what to expect so you can be ready to make every effort to make it as easy as possible for him and you both. i know it differs from person to person. With liver failure, the person with little time left could very well face kidney issues.. when function of one thing starts to go, others begin to follow...and one of the key complications when the liver fails, blood ammonia levels will most likely go up and will also likely experience delusions and confusion.. if that be the case then, just keep your loved one comfortable and BE READY to go to the hospital so steps can be mate to make him comfortable and try to prevent seizures that can happen because of the rise of blood enzymes and ammonia.
My wife knew her time was coming, so she began to drink to help ease some of the stress and discomfort...
Soon Her ammonia levels along with other toxins in the blood affected the brain and she began to cease. .. i mannaged to get her to the hospital before that began so the hospital tepated her and , still had a hard time going. But all in all, it was just the body and the nervous system that dramatize the scene. She was under... first it was a drug induced coma, then the machine was breathing for her.... truthfuly she was medicated through most of the end process of passing.. any time a person begins to die, even though the main organs required to live begin to shut down, the nervous system tends to be the longest part of the hump... also, the heart ive learned is very resilient...
dont be alarmed, because what appears to be a struggle , really isnt as bad as it may look. As long as he is tebated, the medication stills the mind and brain activity where he shouldnt be aware of the seporation of mind and body.... when the time comes to take the tube, it wont take long..... ofcourse THOSE WERE THE ABSOLUTE LONGEST MINUTES OF MY LIFE, EVER !!! Even though she is gone, and life to her now is nothing more than a blink... the hardest part is having to go on without your loved one hoping every day that i can bee with her again....
Just be strong, and appreciate every single moment you can while you can.
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Im so sorry. I just lost my wife to liver failure. IF IT ENDS UP WHERE HIS LIVER IS GOING TO FAIL.....
I have to say that it will come out of nowhere... atleast you know its going to happen. .. maybe my experiences can give you some idea what to expect so you can be ready to make every effort to make it as easy as possible for him and you both. i know it differs from person to person. With liver failure, the person with little time left could very well face kidney issues.. when function of one thing starts to go, others begin to follow...and one of the key complications when the liver fails, blood ammonia levels will most likely go up and will also likely experience delusions and confusion.. if that be the case then, just keep your loved one comfortable and BE READY to go to the hospital so steps can be mate to make him comfortable and try to prevent seizures that can happen because of the rise of blood enzymes and ammonia.
My wife knew her time was coming, so she began to drink to help ease some of the stress and discomfort...
Soon Her ammonia levels along with other toxins in the blood affected the brain and she began to cease. .. i mannaged to get her to the hospital before that began so the hospital tepated her and , still had a hard time going. But all in all, it was just the body and the nervous system that dramatize the scene. She was under... first it was a drug induced coma, then the machine was breathing for her.... truthfuly she was medicated through most of the end process of passing.. any time a person begins to die, even though the main organs required to live begin to shut down, the nervous system tends to be the longest part of the hump... also, the heart ive learned is very resilient...
dont be alarmed, because what appears to be a struggle , really isnt as bad as it may look. As long as he is tebated, the medication stills the mind and brain activity where he shouldnt be aware of the seporation of mind and body.... when the time comes to take the tube, it wont take long..... ofcourse THOSE WERE THE ABSOLUTE LONGEST MINUTES OF MY LIFE, EVER !!! Even though she is gone, and life to her now is nothing more than a blink... the hardest part is having to go on without your loved one hoping every day that i can bee with her again....
Just be strong, and appreciate every single moment you can while you can.
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My dad was recently diagnosed with ESLD. He also has two tumors on his liver. Biopsy results show dead tissue. The oncologist said there is nothing he can do for him. I have him on hospice, which he doesn't know. He doesn't know how sick he is. Me and my daughter are going to talk to him this weekend. Its sad because he started having symptoms 8 months ago and was misdiagnosed. If they had caught it earlier, his outlook would have been better.
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Im so sorry to all those with a loved one with livrr failure. Its gut wrenching to watch. My mom was in end stage liver failure. She could no longer walk, feed herself, or hold a intelligible conversation . She was in the hospital every week and often slipped into comas. She received a livrr transplant. I was comforted to find that she had very little memory of the last year she was sick and no memory of the last 30 days of her illness prior to the transplant. I hope you find some peace and comfort in the comments by those who went thru similar experiences . Many hugs.
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I am sorry to hear about your dad's illness. My dad was also dignosed with end stage liver problem. He has been hospitalized twice for fluid in his abdomen and feet. He is very confused, he doesn't know where he is or remember our names most of the time. He is not eating at all. Always sleeping and tired. He can barely walk but not fast enough to get to the bathroom on time so he is always in diapers. He is bleeding for his mouth and nose. The doctors said there is nothing more they can do. They cannot tell us how much time he has left. The only thing they told us is that he will not feel pain. The new thing about his condition is that he is moaning and talking to himself all night with few understandable words. I don't know if it happened to anyone you know.
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My mom passed away the next day after my first post. Thankfully she did not go through pain and delirium. The nurses were sad as she was courageous and held strong till the last moments. My advice to you all would be to get your loved one cared for by specialised medical staff and also to provide full familial support.
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Dear Van6042,-My dad passed away with those same symptoms with mets in the liver. My mom did not want him to know, afraid that he would stop eating. He had no appetite anyway and he did not complain of pain. So, He turned a mustard yellow and passed away in his sleep. He was yellow for about 2 months progressively and then appetite stopped. Sometimes you will see him stare lup to the ceiling where there may be a light or fixture. He would be preparing to leave this world and you can tell him that it is O.K. to go to the light, to the other side. Sometimes family members linger on cause family doesn't want them to leave. You can give them the O.K. and soon they will. Just say all that you want to say, even if you think they don't understand or hear you. They do.!! And if he passes away and you're not in the room, it is because they couldn't leave you and it was meant that they needed to go without a family member present. May God give you and your family strength.
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My mom's condition has deteriorated so fast, its just unbeleivable. She has liver mets and now liver failure with acute jaundice and water retention. Just saw her today....she is confused and didn't recognise my dad! Its quite hard for him. We are taking mom home so thst her last days are with her family.
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My sister in law had peritoneal CANCER that matastized in her liver. She was in pain but it was controlled with 2 pain meds. She tried marisol(?) but it knocked her out too much. She was told chemo was no longer working. She became weaker and weaker and her appetite decreased. She slept most of the day and would only get up for small meals. This lasted about 3 weeks. Although hospice was involved, she didn't want a hospital bed nor the services of an aid to bathe her. After the 3 weeks her husband needed the help and more hospice services were provided. By this time her pain did increase and she was given morphine. She lasted another 3 days and died peacefully in the arms of her loving husband. I just wish that when docs said chemo was not working but they would give her 2 more cycles she would have stopped the xhemi then and just signed up for hospice. She was dick this entire time and to me, this was precious time she could have had with her family. Her pain was controlled and her death was pain fee contrary to a lot of things that we had read. There was only one issue with breathing that happened shortly before Her death which was controlled by the meds in the hospice box . My advice to you, get hospice involved asap and spend as much time as you can with your dad.
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Oh, I am so sorry. I posted in the wrong place. Could someone please move my post to where you ask new questions? I am just so upset, I got confused when posting.
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I am so angry, I don't know what to do with myself. My mom is dying, and I knew she was going to, but I sure didn't know it would be like this. We were lied to by hospice, and there have been all sorts of ways in which people dropped the ball, and now my mom is paying the price---from a fractured hip that no one seems to know how it happened.........to bedsores.........to antibiotics that were promised to be continued but weren't. I am not only angry, it's killing me inside, and I don't know where to turn. My mom will be gone in a few days, there's no changing that, but it should not have happened the way it has. What can I do with all this anger and rage against caregivers who failed her, especially while I try to be there to provide calm comfort and reassurance as she makes this final transition?
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My husband was given 2 weeks left to live on March 27,2005. We cried and cried. We found out accidently he had the liver disease in December and then they were going to get him on the transplant list and find a liver for him But by the time we went out to pittsburgh for his appointment he was dieing..His skin color was grey,his eyes yellow,he was on lactalose to keep from poisoning from ammonia buildup,he had 5 tumors, 1 being over 5 cms which precluded him from being on the transplant list,all tumors were in the liver ,he had hepatitis C ,serosis,hemocromotosis and of course the cancer. They said he has 2 weeks left to live and if they tried chemo he would die from that his body couldn't take it. He spent most of the day sleeping in between trying to stay awake and do things. He still ate well but I remember he was very swollen and had really high blood pressure.But he was strong ,still chopping wood outside for our woodstove even though his nose would bleed all the time and his mouth ,the gums would bleed Then they found out my son and myself were willing to be tested to be live donors. So we came back after the weekend for the grueling week of crazy tests to find out if either of us could be a donor .They decided it was worth a try when I was able to be a match and did warn us anything could happen he could die on the table even i could die on the table.So o April14,2005 we went in ,I went first and they got me opened up and took out the right lobe of my liver which was 60% of mine and then opened him up and stuck it in him ,of course its not that easy thers a matter of skin, bones, organs,nerves,veins including the portal vein which you die without and they had to make a new one for him to go with his new healthy piece of liver. Well, we were both about 10 to 11 hours in the operating room and to make my story short we just celebrated 10 years even though he has had a stroke and is in a wheel chair now.But my point is has anyone been tested to donate as a live donoror is he too old?
He was 2 weeks left to live and very sick but wanted to just keep doing what he could until the end.God spared him for some reason so i can't tell you from him the last few days. my dad died from kidney failure and was delirious but didnt go out until aa little bit before he died. I hope my Dad wasnt in a lot of pain. We had to tell him it was okay to leave us.We held hands till the end and then I saw his spirit lift up and I closed his eyes for him which is what i had promised him I would do.It was peaceful ,his death so he must not have been in pain!I hope somehow I helped a little bit.these are my experiences.
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My husband has stage 4 Congestive Heart Failure and now is showing signs of liver failure. Itching all over, yellowish tint in the skin around the eyes. Weakness. He is on hospice but they don't tell me much about how much time he has. I know that is up to God. I just want to make sure all family and friends get the chance to visit with him.
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ilovemom, so sorry for your loss! I hope that your being there is a huge positive for you emotionally going forward, and would bet it meant something to Dad even if it was hard to tell due to limited responses... hugs hugs hugs
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During this whole ordeal, he was secretive he didn't tell his dentist about the liver cancer. Someone prescribed codeine. OOPS, not good on liver...Just keep him comfortable, and give him treats or whatever he wants to taste...Dad died early morning......Spent the whole night with him at his home....
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My dad had liver cancer. He did not complain about pain..He was tough. He lived 13 months from diagnosis. It usually starts somewhere else in the body, and dumps into the liver...QUALITY TIME is what you need to worry about....Spend precious time with him....Take care.
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I went through the exact same thing with my dad. It does not have to be the end. Get him CBD Oil immediately! !!! My dad's belliruben was high!!!! They put in a stint in his bile duct. He got bad last. Nov 2015 they gave him 2 weeks to live and gave him waaayyy to much morphine. HE WASN'T IN PAIN! Long story short my husband & I administered him CBD Oil and after a day he was talking to me and in 2 weeks his belliruben was normal!!!! He is still alive and goes to church. PRAISE JESUS!!! CBD oil works for so many conditions. I urge everyone to look it up.
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Clark, find another doctor! Pain should rarely go untreated, especially if it is from something terminal...maybe there is a reason, but if there is it better be good.
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My husband is experiencing abdominal pain and back pain - the doctor told him he could not take any pain relievers. What can I do to help
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I am so sorry that you have to experience this upcoming loss. My dad had cancer that metastasized into the liver. I did everything I could to try and save him, but that was not within my control. His liver had been consumed with several tumors. I saw the MRI. which helped me to not call 911 when I knew he was in his last hours. I wanted him to die at home, not in the emergency room.
I knew I could do nothing more. What we observed was yellowing of his skin, and that worsened. He wasn't able to eat much and had loose stools. Make sure you have hospice or other support around for you. Enjoy the time you have together, and talk alot about all that is important . My dad didn't really complain of much pain, but each case is different. May god Bless.
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There was just a "Piece of My Mind" essay in JAMA about someone who died at home with liver disease - it was described as "a good death" though very sadly premature, not much pain but just decreasing alerness until unconcsiousness. I am very sorry you are going through this too, and I hope it is no harder than it has to be...hugs and God bless you all...
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I am so sorry your dad is facing this, but it is good that he has you there. Have you asked about hospice involvement? A good hospice agencey should be very helpful with pain control. There is really no excuse for someone to have inadequate pain control at the end of life. Patients usually "know" even if things aren't discussed. This is a very difficult time for everyone, reach out for all the help you can find.
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You will never know exactly how your Father's last days will be until they happen. I was warned about how painful and possible troublesome my friend's Moms last days would be and it was nothing like what they prepared us for. If you look for the bad your last days with your Dad will be exactly that worry. Instead enjoy the days you have, Pray for guidance during this time and wake up each day to the joy of life that you have and make each one special. I know that this is a hard time for you but please look for the end. When the time is near make sure you tell your Father it is okay to leave you. This lets them know that you are aware of what is going on and you will miss them but you know that it is time to release this wore out body and he will be whole again with those who have gone before him and sit with God and all his angles in Heaven. God Bless you during this time and know that I will pray for strength and peace to your heart to accept each day and not look for the end but think of it as the begining.
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