Discussions By Condition: Medical Stories

End Stage Liver Disease

Posted In: Medical Stories 15 Replies
  • Posted By: Anonymous
  • May 14, 2007
  • 09:14 PM

I had a brother 57 yrs old who passed away 5/6/07 from end stage liver disease. I am just trying to understand why he passed so quick. The onset date was 2/26/07. He was first diag. with kidney failure, gallbladder and then end state liver disease. We were in a out of hospital since 2/26/07. We were even lucky to visit Pfleger Liver Institute in L.A. Unfortunately, my brother was diag. with an acholol liver and therefore, had a six month soberity waiting period. My brother would have a beer or two in the evenings after working all day and on the weekends he would either have a few beers or Segram 7 drink. There were time when he did not drink at all. He was told by the gastrolgist his liver was at a C and the only treatment would be a liver transplant. I need to understand why my brother died so quick. There are people walking around with End State Liver Disease and still alive. My brother's last drink was Jan. 5, 2007 and he did not have anything to drink the month of November and most of December, 2006. From the onset my brothers MELD Scores were in the high 30's and intermitently in the 40's. Doctors would not tab his belly because is INR level was 2.4 and creatine 5.8 and low as 4.4, the bilrubins were 16.1 and higher at times. I am sad and confused and trust want to understand.

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15 Replies:

  • I have not received any replies. I guess no one is initerested in my brother's case, since he is dead.:confused:
    Cynthia Buttram 1 Replies Flag this Response
  • Cynthia - sorry to hear about your brother. Your liver is your most important organ. It tries to do self repair, but when it can't do that it continues to get worse. The liver can operate at only about 15 or 20% of its regular capacity and appear to be OK. So it can deteriorate quickly when it reaches a certain stage. I had a patient about 5 years ago that was mostly having difficulty swallowing. She got to the famous Mayo Clinic but they would not even see her and she passed away about 3 weeks later. They apparently knew it was the liver but felt they could not do anything about it. People can have the same official diagnosis yet it can express itself very differently in different people. Some people I have known personally have been major alcohol consumers for years with very few liver problems. Others (ex in-law) quit years of drinking, stayed alive another twelve years but still died ultimately from liver disease and cancer of the liver. If the liver does not or can not work well, nothing else in the body can either. Hope this helps you with some of the confusion. Any other questions please post.
    Anonymous 42789 Replies Flag this Response
  • I am sorry. I read your post earlier and honestly, it was a little too painful to reply.My MIL also died at age 57 of liver failure. She contracted Hep C about 20 years before, they think, during a blood transfusion and subsequent spleen removal. She was diagnosed with Hep C. 7 years before she died from it.When the liver starts failing other organs start to fail, too. The kidneys, especially. There is not yet a machine for liver "dialysis", but it is in the works, supposedly. She developed encephalopathy 6 weeks before she died. She died while waiting for a transplant. For me, I was so angry because she was my MIL, not my Mother and I could not act because my FIL wouldn't listen. I suspect her encephalopathy symptoms started long before, but he didn't take her to the hospital UNTIL she wouldn't wake up from sleeping all day. Stupid Man. It has taken me a long time to not hold this against him. He most certainly contributed to her death, but....he is an embicile when it comes to "these things" and a huge cynic who would never listen to a younger person, especially me, I feel.Sorry, this is a little painful, because my husband's family fell apart when she died and I was expecting my 1st child. She would have been delighted to see her first grandchild..... Unfortunately, she did not get on the transplant list until 5 weeks before she died. Then, they took her off the list, then back on. It is crazy and I don't understand how that works. I think at one point they took her "off" the list because she developed an infection from her 2nd or 3rd belly tap. I will never again let anyone be "tapped" without an ultrasound machine on hand.....she developed a hematoma at the tap site, aparently "common". I feel, too, responsible because I kept asking about the stupid belly taps. Maybe if she hadn't had one, she wouldn't have develped the infection and could have held out longer for a liver. Though, I know, that kind of thinking: blame, self blame can get you nowhere.It sounds as though your Brother's liver disease was mistaken for alcoholic chirrosis when it may not have been. There are other things that could cause liver failure. As illustrated through me, Hep. C. Was he ever tested for hemochromotosis (iron-overload)? Copper toxicity? When awaiting a transplant (she was in a coma at that point and bleeding from the eyes), many excuses were offered. I don't know why it is so....hard to figure out who deserves a transplant. I do know they told her the treatment Interferon/Ribavarin would not work on her when she was diagnosed with Hep C. because she was "too" advanced (7 years prior to dying). I do not know who talked her out of that. I would have tried it anyway.I hate to say this, the more you dig, the more questions will arise. Something went wrong with my MIL's death. The whole liver transplant list thing is enough in my mind. The teams of Doctors kept disagreeing on courses of action. One was a transplant team, then there was an ICU team and another team and so on. One liver that "came in" (you know someone had to die) was not good enough--a fatty liver. I do not know what the formula is for those who get a transplant in any area nor do I believe that it is necessarily "fair", even for those that will have a good outcome. I don't know who is to blame if anyone is to blame including me and my FIL. Ultimately, most everything was my MIL's decision until she became too incoherent with the encephalopathy. As said earlier, some people survive longer with the same ailment. My father was supposed to die 10 years before he did....I even moved up my wedding so he could walk me down the aisle!And also, I have thought: What if my MIL did survive the transplant? What would her quality of life have been? She was not the dependent type and her husband would have had a hard time delivering that kind of support.I, too, understand what you mean about people walking around with end-stage liver disease. I can not tell you how many "carrot-colored" people I saw walking around the hospital after my MIL died.I know these details of my situation may not help you. It is a difficult thing to understand what happens when people--loved ones-- die before they are "supposed" to.I hope you find some peace.
    Anonymous 42789 Replies Flag this Response
  • Dear Ralp & Unregistered:Thank you for your replies. Yes, you both have helped me a little. I understand the part about tapping, we were just the opposite, we wanted my brother to be tapped. He had only been tapped once at UCLA and boy! what a difference that made. At UCLA they said that he may have to be tapped once every two weeks or maybe even once a week. At Redlands Community he hospitalization physician would not tap him because his INR was 2.4, his creatinine was 4.4 and his bilrubin was 16.5. I understood the risk but what was there to loose, my brother was dying anyway. I still can't help but think that if they would have tapped him he could have lasted longer and maybe beat the 6 month soberity period (JUNE). I am so sorry for your loss Unregistered. LIFE SUCKS!!! I have a pretty strong faith, although I can't help but question it sometines. My mother keeps telling me that the Good Lord always has a reason, well right now I can't understand the reason. But I am sure I will get it one day. I learned a lot with my brother's illness and I say to myself it is unfortunate that we as human beings to not reach out to help people time of need until we unfortunately are in the same situtation. So, I say to anyone out there if you are dealing with this killer disease God Bless, and if I can answer any questions that I know the answer for sure, don't hesitate to ask. Ralph, sound like Dr. Ralph, thank you.
    Anonymous 42789 Replies Flag this Response
  • Hello. I am sorry to hear about your brother. I completley understand your frustration. My father has been diagnoised with near end liver disease. Doctors have also told us that there is nothing they can do for him. It is so depressing and frustrating that as doctors their mission is to help but some doctors refuse to do just that.
    Anonymous 42789 Replies Flag this Response
  • i am sorry anyone has to go thru this. my step dad is getting his stomach drained every 20 days and i am scared. i go online looking for something natural that can help him and i know even if i found anything he wouldn't try it. he salted his blt today and part of me wants to get mad the other part thinks why not? he stopped drinking when he got sick and now the emt told me now is when he should drink the most. i want to wake up tomorrow and have him back to his old self and doing good. no one should have to suffer like he is its just not fair. no one should have to watch anyone suffer like this either.
    Anonymous 42789 Replies Flag this Response
  • I had a brother 57 yrs old who passed away 5/6/07 from end stage liver disease. I am just trying to understand why he passed so quick. The onset date was 2/26/07. He was first diag. with kidney failure, gallbladder and then end state liver disease. We were in a out of hospital since 2/26/07. We were even lucky to visit Pfleger Liver Institute in L.A. Unfortunately, my brother was diag. with an acholol liver and therefore, had a six month soberity waiting period. My brother would have a beer or two in the evenings after working all day and on the weekends he would either have a few beers or Segram 7 drink. There were time when he did not drink at all. He was told by the gastrolgist his liver was at a C and the only treatment would be a liver transplant. I need to understand why my brother died so quick. There are people walking around with End State Liver Disease and still alive. My brother's last drink was Jan. 5, 2007 and he did not have anything to drink the month of November and most of December, 2006. From the onset my brothers MELD Scores were in the high 30's and intermitently in the 40's. Doctors would not tab his belly because is INR level was 2.4 and creatine 5.8 and low as 4.4, the bilrubins were 16.1 and higher at times. I am sad and confused and trust want to understand.I am the Mother of a 31 year old who was told he had end stage liver desease he has all the systems they can not do a tap we have seen 6 doctors and they all say the liver is to far gone there is nothing they can do. One doctor me not to bother taking him to the hospital if he gets worse because they can not help him.So he gets short of breath and I am to sit back and watch him gasp for air are they kidding.He vomits alot and is in pain most of the time and they tell me they can not do anything,where is their humanity or is it all about the money.I am so angry this is my Son they are dismissing like he is an animal.
    Anonymous 42789 Replies Flag this Response
  • so sorry for your son,god bless you bolth.my sister who is 45 and is an alcoholic was put in the hospital yesterday, they took fluid out of her belly and said she has liver failure. Shes skin and bone with popped out eyes and looks 9 months pregnant.what should we expect?
    Anonymous 42789 Replies Flag this Response
  • so sorry for your son,god bless you bolth.my sister who is 45 and is an alcoholic was put in the hospital yesterday, they took fluid out of her belly and said she has liver failure. Shes skin and bone with popped out eyes and looks 9 months pregnant.what should we expect?My name is Amy.My sister Missy passed away last October. She was only 38. she suffered many illnesses throughout her life. It started with Leukemia when she was 10. I was her donor for her bone marrow transplant. I was 9. The chemo and radiation really put a toll on her body. She developed diabetes at age 11. Later, at 30, she had a heart attack, and had to undergo a dbl bypass. Then, a few yrs later, she had a kidney removed, and then a cpl yrs after, she had to have a breast misectomy. Then for about a year before she died, she started to vomit, she was always cold, she would lse and gain weight. And she was so weak. 2 weeks and 3 days before she died, she was incoherant. She was was holusinogenic. So she was life flighted to the university hospital. She was put on dialysis because her liver was shutting down her kidney. After a few days she was feeling better. She was eating, laughing, and almoost back to herself. But then she started to go back downhill. We were losing her. The Drs really never told us that she was dying. Not until the day she actually died. Missy was a Christian and she loved God. I knew she was going to be in heaven, but I wasnt ready to let go of her. We started singing praise songs to her and it was then that she looked as if she was peaceful and ready to go. No more pain..no m0re suffering. She had been through s0 much in this crazy w0rld. G0d gave us almost 30 m0re years with her and it was time for Him t0 have her back. Its ok. We all miss her s0 much but we kn0w that s0meday we will be with her again.....I pray for each and every pers0n on here that is hurting fr0m l0sing a l0ved 0ne. There is a heaven! And life d0es exist after death! With s0me0ne who l0ves us more than anyone else in this world. I am g0ing to see my sissy again!!!!! Through God, I have peace.
    Anonymous 42789 Replies Flag this Response
  • I am the Mother of a 31 year old who was told he had end stage liver desease he has all the systems they can not do a tap we have seen 6 doctors and they all say the liver is to far gone there is nothing they can do. One doctor me not to bother taking him to the hospital if he gets worse because they can not help him.So he gets short of breath and I am to sit back and watch him gasp for air are they kidding.He vomits alot and is in pain most of the time and they tell me they can not do anything,where is their humanity or is it all about the money.I am so angry this is my Son they are dismissing like he is an animal.Hello my name is Mike, I am so sorry for what you are going through. My father passed away from ESLD in Spetember at 50 yrs old. He had no health insurance, and the doctors did not seem to care nor want to help him. I too felt angry, I would say if you fell your son needs to go to the hospital at any time take him, who care what they say. Has your Son been put on a transplant list? If this is still an option I would do what you can to try to get him on the list if you havent already.If not then one thing I would suggest is to look into Hospice care. In the last few days of my dads life we had him on Hospice, and it was wonderful. The one thing to keep in mind with Hoispice is they do not treat the disease but rather focus on comfort, they will do everything possible to minimze the pain and make him comfortable. This can be done right in your home.I know this is not very comforting and I am truly sorry, my heart goes out to you. If you dont mind me asking what symptoms is your son exhibiting? There are certain medications and such that can help manage certain symptoms to make him more comfortable. Lactulose - helps removes toxins to bring down ammonia levelsLoads of vitaminsDiareticsetc.
    Anonymous 42789 Replies Flag this Response
  • so sorry for your son,god bless you bolth.my sister who is 45 and is an alcoholic was put in the hospital yesterday, they took fluid out of her belly and said she has liver failure. Shes skin and bone with popped out eyes and looks 9 months pregnant.what should we expect?my father in law is 57 and has been in the hospital since last wednesday (6/30/2010) and sounds like the exact same thing. i have been combing message boards to find someone who can relate or help with unanswered questions. he was also in acute renal failure, his kidneys are functioning less than 10%, creatinine has been over 5 since he was admitted, not much change. his ammonia just went up yesterday for the first time, to 84, he has been on lactulose since yesterday, 2x a day, seems to be doing its job, but haven't gotten labs back yet. we are only 28 and seems like we are too young to be going through this already! he has only been drinking heavily for the last 12 years or so... i guess his liver just had enough! he is in end stage liver disease, they opted to not do a biopsy on his liver or kidneys. transplant is not an option nor is dialysis... they had drained 6 liters of fluid off (he had lost a lot of weight everywhere, except his belly, which looked 9 months pregnant) and now they have a ostomy bag to drain. we are not sure what to expect next, either, so anything you have is greatly appreciated. oh and his BUN is 84 (blood uria...) i hope i could be of assistance in your time of need! it is frustrating to just watch your loved one deteriorate and they say there is nothing more they can do, he is fighting hard though!
    karioare 2 Replies Flag this Response
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  • Hello my name is Mike, I am so sorry for what you are going through. My father passed away from ESLD in Spetember at 50 yrs old. He had no health insurance, and the doctors did not seem to care nor want to help him. I too felt angry, I would say if you fell your son needs to go to the hospital at any time take him, who care what they say. Has your Son been put on a transplant list? If this is still an option I would do what you can to try to get him on the list if you havent already.If not then one thing I would suggest is to look into Hospice care. In the last few days of my dads life we had him on Hospice, and it was wonderful. The one thing to keep in mind with Hoispice is they do not treat the disease but rather focus on comfort, they will do everything possible to minimze the pain and make him comfortable. This can be done right in your home.I know this is not very comforting and I am truly sorry, my heart goes out to you. If you dont mind me asking what symptoms is your son exhibiting? There are certain medications and such that can help manage certain symptoms to make him more comfortable. Lactulose - helps removes toxins to bring down ammonia levelsLoads of vitaminsDiareticsetc.i do not have much to offer in the way of answers, but i also have alot of unanswered questions. i was just replying to another post and i saw this one so i am pasting my reply to the other post...any advice is greatly appreciated.my father in law is 57 and has been in the hospital since last wednesday (6/30/2010) and sounds like the exact same thing. i have been combing message boards to find someone who can relate or help with unanswered questions. he was also in acute renal failure, his kidneys are functioning less than 10%, creatinine has been over 5 since he was admitted, not much change. his ammonia just went up yesterday for the first time, to 84, he has been on lactulose since yesterday, 2x a day, seems to be doing its job, but haven't gotten labs back yet. we are only 28 and seems like we are too young to be going through this already! he has only been drinking heavily for the last 12 years or so... i guess his liver just had enough! he is in end stage liver diseasehttp://images.intellitxt.com/ast/adTypes/2_11pxw.gif, they opted to not do a biopsy on his liver or kidneys. transplant is not an option nor is dialysis... they had drained 6 liters of fluid off (he had lost a lot of weight everywhere, except his belly, which looked 9 months pregnant) and now they have a ostomy bag to drain. we are not sure what to expect next, either, so anything you have is greatly appreciated. oh and his BUN is 84 (blood uria...) i hope i could be of assistance in your time of need! it is frustrating to just watch your loved one deteriorate and they say there is nothing more they can do, he is fighting hard though! http://forums.wrongdiagnosis.com/images/misc/progress.gif http://forums.wrongdiagnosis.com/images/buttons/edit.gif
    karioare 2 Replies Flag this Response
  • my father in law is 57 and has been in the hospital since last wednesday (6/30/2010) and sounds like the exact same thing. i have been combing message boards to find someone who can relate or help with unanswered questions. he was also in acute renal failure, his kidneys are functioning less than 10%, creatinine has been over 5 since he was admitted, not much change. his ammonia just went up yesterday for the first time, to 84, he has been on lactulose since yesterday, 2x a day, seems to be doing its job, but haven't gotten labs back yet. we are only 28 and seems like we are too young to be going through this already! he has only been drinking heavily for the last 12 years or so... i guess his liver just had enough! he is in end stage liver disease, they opted to not do a biopsy on his liver or kidneys. transplant is not an option nor is dialysis... they had drained 6 liters of fluid off (he had lost a lot of weight everywhere, except his belly, which looked 9 months pregnant) and now they have a ostomy bag to drain. we are not sure what to expect next, either, so anything you have is greatly appreciated. oh and his BUN is 84 (blood uria...) i hope i could be of assistance in your time of need! it is frustrating to just watch your loved one deteriorate and they say there is nothing more they can do, he is fighting hard though!My father is also 57 and has ESLD. The doctors put a said that his liver was so far gone the best they could do was to put a stint in it so that food could pass through it normally. They gave him 2weeks to 2 months to live and told him they couldn't do anything more for him. Their advice was to drink more juice and change his diet and his liver may not deteriorate as quickly. I realize that my father is an Alcoholic and that this was his own doing but a little compassion from a Doctor is not to much to ask for I would think.
    Anonymous 42789 Replies
    • September 21, 2010
    • 04:56 AM
    • 0
    Flag this Response
  • My father is also 57 and has ESLD. The doctors put a said that his liver was so far gone the best they could do was to put a stint in it so that food could pass through it normally. They gave him 2weeks to 2 months to live and told him they couldn't do anything more for him. Their advice was to drink more juice and change his diet and his liver may not deteriorate as quickly. I realize that my father is an Alcoholic and that this was his own doing but a little compassion from a Doctor is not to much to ask for I would think.I completely agree...the doctors don't seem to have much compassion for a man facing the end of his life. My father-in-law has improved sooooooo much since June 30, 2010 when he first went to the ER. He also has a Denver cath that they were draining about 1500cc every other day, now they only drain about once a week. They actually told us to get hospice because they didn't think his kidney's would ever function again, but they did turn around!!! He is now living on borrowed time because noone knows how long someone can live in their situation. He has defied what the doctors have said so far, so we just keep hoping for the best days!! I just recommend spending as much good quality time as you can, not focus on the negative, which it sounds like you are trying to do! The will to live is a strong thing, hope you can find some comfort in these tough times....
    Anonymous 42789 Replies
    • September 21, 2010
    • 09:53 PM
    • 0
    Flag this Response
  • I read these posts with shock and deep sadness. Four years ago I became very ill. Strange numbness in my legs, difficulty breathing, and a gradually swelling that moved up from feet until my belly was huge. I could not walk without great effort, and became very short of breath within 9 months. After spending 3 weeks laying in a hospital, with doctors finally saying that my liver was failing ("and it must be due to alcohol"), and I should prepare for the end. But a miracle happened. One man, the gastroenterologist who happened to be on call when my liver biopsy was performed, saw something different. He ordered more blood tests. Finally there was an accurate diagnosis: Alpha-1-Antitrypsin Deficiency. It is hereditary, and if you get the trait from both parents - odds are good that you will have early lung disease. Some of us are fortunate enough to develop cirrhosis without any explanation. I was finally diagnosed with less than 6 weeks to live. MELD score of 25. It is by Grace that I received my transplant 4 weeks later. I hope the previous posters on this thread will receive my message. Have hope for your loved ones! Ask, or beg, for Alpha-1-Antitrypsin Deficiency testing. And please have your entire family tested.
    A1ALiverTransplant 1 Replies Flag this Response
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