Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 He is an alcoholic, so no transplant. But he has stopped drinking. From: abijann <no_reply > Subject: Kim To: livercirrhosissupport Date: Sunday, November 23, 2008, 6:22 PM Only the doctors who can see your husbands test results and know his medical background, can even give you a " hint " as to how long a person has to live. If he is on the transplant list, the higher up on the Meld score he goes, the more likely he will die sooner if he doesn't have a transplant. People who are around a 6, are healthier and are considered to live longer without a transplant and may even be able to be taken off the list. Someone who is closer to the top of the list; for example, at 35 to 40, on their Meld score, have a shorter time to live and need a transplant very soon. I have to say, personally, that it did not seem to swell up until right before the transplant took place...but that is just us. Each mans body chemistry is different and each patient reacts differently and gets symptoms at different times. You can not be sure whether or not this is true for you or not. Some people don't even develop any symptoms or signs of cirrhosis at all and are walking around with this disease and don't even know it. Therefore, you cannot be sure unless the doctor can see something on the blood tests, films, etc, where he can give you an educated guess on his life ending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi, My husband was an alcoholic. He got a transplant. He did not know he was soo sick til it hit him right away. he had to get into rehab, but he did get a new lease on life. Which means he is with me now. Everything is not lost if you are alcoholic, it may be a new beginning. Sue From: abijann <no_reply@yahoogroup s.com> Subject: Kim To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, November 23, 2008, 6:22 PM Only the doctors who can see your husbands test results and know his medical background, can even give you a " hint " as to how long a person has to live. If he is on the transplant list, the higher up on the Meld score he goes, the more likely he will die sooner if he doesn't have a transplant. People who are around a 6, are healthier and are considered to live longer without a transplant and may even be able to be taken off the list. Someone who is closer to the top of the list; for example, at 35 to 40, on their Meld score, have a shorter time to live and need a transplant very soon. I have to say, personally, that it did not seem to swell up until right before the transplant took place...but that is just us. Each mans body chemistry is different and each patient reacts differently and gets symptoms at different times. You can not be sure whether or not this is true for you or not. Some people don't even develop any symptoms or signs of cirrhosis at all and are walking around with this disease and don't even know it. Therefore, you cannot be sure unless the doctor can see something on the blood tests, films, etc, where he can give you an educated guess on his life ending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 From what he told me, the docs said he is not a candidate until he's had a year of healthy living. He was trying to quit drinking on his own, but it was too late. Classic end stage everything. I don't think he wanted to live after he was shot in 2006. Then 2 back ops. and more pain. I don't know. I could never get through to him, even having a son didn't change his drinking. It's just sad that we'll be alone and it is horrible to see him suffer even more than before. From: abijann <no_reply@yahoogrou p s.com> Subject: Kim To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, November 23, 2008, 6:22 PM Only the doctors who can see your husbands test results and know his medical background, can even give you a " hint " as to how long a person has to live. If he is on the transplant list, the higher up on the Meld score he goes, the more likely he will die sooner if he doesn't have a transplant. People who are around a 6, are healthier and are considered to live longer without a transplant and may even be able to be taken off the list. Someone who is closer to the top of the list; for example, at 35 to 40, on their Meld score, have a shorter time to live and need a transplant very soon. I have to say, personally, that it did not seem to swell up until right before the transplant took place...but that is just us. Each mans body chemistry is different and each patient reacts differently and gets symptoms at different times. You can not be sure whether or not this is true for you or not. Some people don't even develop any symptoms or signs of cirrhosis at all and are walking around with this disease and don't even know it. Therefore, you cannot be sure unless the doctor can see something on the blood tests, films, etc, where he can give you an educated guess on his life ending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Hi, Kim, its Bobby. The standard time of sobriety you must have for a transplant is usually 6 months. THe doctors he saw might not know this. He needs to be seen by a hepatologist, a liver doctor. This will be helpfull weather or not he wants a transplant. Transplants are very difficult, and you give your self to the doctors and have to follow their instructions to the letter. They frown upon those unable or unwilling to do so. Most family doctors and GP doctors do not know all the facts about transplant programs, I know mine sure didn't. She didn't know the difference between compensated and decompensated. I just think the " one year clean " thing is false. That would be the strictest program in the entire country. Love Bobby Sent via BlackBerry from T-Mobile Kim To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, November 23, 2008, 6:22 PM Only the doctors who can see your husbands test results and know his medical background, can even give you a " hint " as to how long a person has to live. If he is on the transplant list, the higher up on the Meld score he goes, the more likely he will die sooner if he doesn't have a transplant. People who are around a 6, are healthier and are considered to live longer without a transplant and may even be able to be taken off the list. Someone who is closer to the top of the list; for example, at 35 to 40, on their Meld score, have a shorter time to live and need a transplant very soon. I have to say, personally, that it did not seem to swell up until right before the transplant took place...but that is just us. Each mans body chemistry is different and each patient reacts differently and gets symptoms at different times. You can not be sure whether or not this is true for you or not. Some people don't even develop any symptoms or signs of cirrhosis at all and are walking around with this disease and don't even know it. Therefore, you cannot be sure unless the doctor can see something on the blood tests, films, etc, where he can give you an educated guess on his life ending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Thanks for the info. I'm going to see what I can figure out tomorrow, since offices are open again. When we left the hospital, we had a list of medications he needed to take and the nurse said, " low-salt diet. " Nothing else, no paperwork, but that's probably my husbands rush out the door.... You can lead a horse to water... I'm going to call for info on his diet etc. He told me that they were giving him liquid tylenol in the hospital. I thought that was bad for liver failure? Kim From: abijann <no_reply@yahoogrou p s.com> Subject: Kim To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Sunday, November 23, 2008, 6:22 PM Only the doctors who can see your husbands test results and know his medical background, can even give you a " hint " as to how long a person has to live. If he is on the transplant list, the higher up on the Meld score he goes, the more likely he will die sooner if he doesn't have a transplant. People who are around a 6, are healthier and are considered to live longer without a transplant and may even be able to be taken off the list. Someone who is closer to the top of the list; for example, at 35 to 40, on their Meld score, have a shorter time to live and need a transplant very soon. I have to say, personally, that it did not seem to swell up until right before the transplant took place...but that is just us. Each mans body chemistry is different and each patient reacts differently and gets symptoms at different times. You can not be sure whether or not this is true for you or not. Some people don't even develop any symptoms or signs of cirrhosis at all and are walking around with this disease and don't even know it. Therefore, you cannot be sure unless the doctor can see something on the blood tests, films, etc, where he can give you an educated guess on his life ending. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 Thank you for helping. He doesn't take care of himself or see doctors without being dragged. It's like he wants to die and doesn't want to die. He isn't drinking now. I don't think he will again. Maybe once your life really does stare you in the face, it means more? Why didn't he care all these years that everyone was warning him? He refused to believe even his doctor's last warning. When I asked him these things, he only says that, " " There is not point in blaim now. I am sorry and I just have to move forward. " I can accept and appreciate that, but it doesn't help. We're trying to just be the same as we always have been with each other. It's as normal as it can be. There aren't " problems " between us, he is just irrational about his health. He wants help, he doesn't want to go get it. Makes no sense, but I'm going to keep trying. Thanks for being here to help all of us. Your efforts are angelic, really. Kim From: abijann <no_reply > Subject: Kim To: livercirrhosissupport Date: Sunday, November 23, 2008, 6:53 PM At one time, a person who drank alcohol, was not even considered for a transplant unless they stopped drinking for a period of six months. Now, they take it on a case by case basis. Your husband has two hurdles to climb over now, the alcohol addiction and also the cirrhosis of the liver. He needs encouragement and understanding and support to get through all this. However, it isn't easy to make someone who drinks alcohol to understand things. It seems the doctors are doing all they can for him...but, if he doesn't follow their orders....then the end doesn't sound good. The hospital usually have detox centers where they can give the patient medication to help with the symptoms of coming off the alcohol...it makes it much more easy than trying to do this on his own. Your husband may or may not be in denial right now. Almost in shock from what the doctor told him. It will take time till he comes to terms with all this. It would be best if he talked with you about it and not shut you out. Since this condition may have been brought on by his alcoholic consumption, which is something he did that " may " have caused it (there are many things that cause cirrhosis of the liver) then he might feel he is being pointed out and guilt may develop from it. There are alot of people here who has the same problem he is going through...it would be wonderful if they could talk with him on this group site. He has to learn to forgive himself and go on from this point on and not look back to pass mistakes or disappointments. For you, there are alot of caregivers in this group and those who have lost loved ones to this disease. Ask any questions you need to, share with us how you feel about things....we are here to stand by you and help. One thing I would do is see about having an advance directive drawn up or a power of attorney form signs by him giving you rights to talk to his doctor and handle his affairs. Privacy laws, now, make it very hard on a spouse. There will come a time when his mind will not be very good at all in this disease and you will have to handle all things. The condition is known as encephalopathy. ..where the patient's thinking isn't right and his memory isn't good. Usually a problem with the liver starts out as inflammation inside the liver, which causes the liver to enlarge. Not only does the liver enlarge, but the spleen...located on the other side of the body from the liver, will also enlarge. The spleen enlarges because the blood isn't able to flow through the liver well anymore and it backs up into other areas. The spleen is one of them, however, it does back up into vessels too small to handle this amount of blood and causes varicose veins. These places are usually the esophagus, rectum, and belly button area. Since these veins are weaker, they can balloon out just like and balloon and break open. If you ever see blood from his rectum or he throws up red blood, purple looking blood, or coffee ground like substances.. .it is a definite emergency to get him to the hospital immediately otherwise he could bleed out completely or have internal bleeding. If his belly has fluid build up in it, then they have a procedure where they can drain the fluid which will give him instant relief...known as a paracentesis. Remember one thing: you have to take care of you, otherwise you won't be there to take care of him. I'm sorry that he isn't speaking to you now. It takes a very gentle voice and hand to let him know how much you care and to open up to you. If you tell him that you want to go through this with him, that you will be there for him no matter what... even if he is trying to push you away, you will still be there... then he might open up to you. Please remember also: the patient has a right to refuse medical attention. If the doctors feel they will be held accountable for something happening to him cause he isn't following their orders or their recommendations, then they might ask him to sign a release form which will remove them from his care and being sued by him. I hope this give you some info. Look at the links section here... there are alot of good sites where you can find alot of info on this disease. Here is a good place to start: http://www.medicine net.com/cirrhosi s/article. htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 There is a book called alcoholics anonymous, it is referred to as " the big book " .. The online link is http://www.anonpress.org/bb/ This book has a chapter called " more about alcohol " . The chapter called " the doctors opinion has a quote from a Dr. Silkworth who said " Men and women drink essentially because they like the effect produced by alcohol. The sensation is so elusive that, while they admit it is injurious, they cannot after a time differentiate the true from the false. To them, their alcoholic life seems the only normal one. " I found that as I looked back into my past, this was very very true for me. Years ago (1989)I had quit drinking, and after 2 full years of sobriety I made a deal with myself to only drink beer and never let it affect my job, health, and above all never get behind the wheel after drinking " . Well, I kept that deal for 16 years untill end stage liver disease robbed me of my job, my health, and I know for a fact now that every morning I drove to work with a defective liver, and elevated BAC but didn't know it. I suspected it, but I was in full denial. Reading some of this book will help you understand and possibly have a better relationship with him, even if he never goes to one meeting. There are many facts about alcoholism which mystify us, but are not out of reach. Good luck, God bless you. Love, Bobby. Ps- the irational behavior might be hepatic encephalopathy. Most of us here have it to some degree. Toxins in the brain. He really really needs to see a hepatogist. Sent via BlackBerry from T-Mobile Kim To: livercirrhosissupport Date: Sunday, November 23, 2008, 6:53 PM At one time, a person who drank alcohol, was not even considered for a transplant unless they stopped drinking for a period of six months. Now, they take it on a case by case basis. Your husband has two hurdles to climb over now, the alcohol addiction and also the cirrhosis of the liver. He needs encouragement and understanding and support to get through all this. However, it isn't easy to make someone who drinks alcohol to understand things. It seems the doctors are doing all they can for him...but, if he doesn't follow their orders....then the end doesn't sound good. The hospital usually have detox centers where they can give the patient medication to help with the symptoms of coming off the alcohol...it makes it much more easy than trying to do this on his own. Your husband may or may not be in denial right now. Almost in shock from what the doctor told him. It will take time till he comes to terms with all this. It would be best if he talked with you about it and not shut you out. Since this condition may have been brought on by his alcoholic consumption, which is something he did that " may " have caused it (there are many things that cause cirrhosis of the liver) then he might feel he is being pointed out and guilt may develop from it. There are alot of people here who has the same problem he is going through...it would be wonderful if they could talk with him on this group site. He has to learn to forgive himself and go on from this point on and not look back to pass mistakes or disappointments. For you, there are alot of caregivers in this group and those who have lost loved ones to this disease. Ask any questions you need to, share with us how you feel about things....we are here to stand by you and help. One thing I would do is see about having an advance directive drawn up or a power of attorney form signs by him giving you rights to talk to his doctor and handle his affairs. Privacy laws, now, make it very hard on a spouse. There will come a time when his mind will not be very good at all in this disease and you will have to handle all things. The condition is known as encephalopathy. ..where the patient's thinking isn't right and his memory isn't good. Usually a problem with the liver starts out as inflammation inside the liver, which causes the liver to enlarge. Not only does the liver enlarge, but the spleen...located on the other side of the body from the liver, will also enlarge. The spleen enlarges because the blood isn't able to flow through the liver well anymore and it backs up into other areas. The spleen is one of them, however, it does back up into vessels too small to handle this amount of blood and causes varicose veins. These places are usually the esophagus, rectum, and belly button area. Since these veins are weaker, they can balloon out just like and balloon and break open. If you ever see blood from his rectum or he throws up red blood, purple looking blood, or coffee ground like substances.. .it is a definite emergency to get him to the hospital immediately otherwise he could bleed out completely or have internal bleeding. If his belly has fluid build up in it, then they have a procedure where they can drain the fluid which will give him instant relief...known as a paracentesis. Remember one thing: you have to take care of you, otherwise you won't be there to take care of him. I'm sorry that he isn't speaking to you now. It takes a very gentle voice and hand to let him know how much you care and to open up to you. If you tell him that you want to go through this with him, that you will be there for him no matter what... even if he is trying to push you away, you will still be there... then he might open up to you. Please remember also: the patient has a right to refuse medical attention. If the doctors feel they will be held accountable for something happening to him cause he isn't following their orders or their recommendations, then they might ask him to sign a release form which will remove them from his care and being sued by him. I hope this give you some info. Look at the links section here... there are alot of good sites where you can find alot of info on this disease. Here is a good place to start: http://www.medicine net.com/cirrhosi s/article. htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Thank you for your help, everyone. Hearing from people who know is the best. Kim Subject: kim To: livercirrhosissupport Date: Sunday, November 23, 2008, 10:11 PM Hello Kim,sorry to hear of your husbands stuberness,and I doubt they gave him Tylenol at the hospital it is very toxic to the liver even aspirin is no good! When I was in and in intensive care the only thing I got was a very low dose 2 1/2 mg.of morphine.As far as your husband wanting and not wanting help is very common,I also was told to quit for a year and that was the wrong thing to hear because an alcoholic That is too far for comprehention, I had to get very ill and hospitalized with varices (the bleeding that was discribed to you)and literally in fear of waking up before I smelled the coffee,everyone is different.Chin up though,I was not suppose to make it through the night,I did.Know one thought I would quit drinking ,I did.The transplant process is a slow one,maybe your husband just needs time to soak all this information in.This site has brightened up some of the worst pathetic days I have had lately and am thankfull for it.My prayers are with you and your family. God bless. Quote Link to comment Share on other sites More sharing options...
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