Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Thank you for letting me be a part of this group. You are most welcome Anne We are happy to have you here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Hi Anne, Welcome to the group. We are a motley crew, but all dedicated to improving our lives by eating in a more healthy way and by exercising on a regular basis. Steve and his journey are our inspiration. It is not easy to make a decision to leave home and family and set off into the unknown as he did. Those who nitpick about what he did do not appreciate what effort it took to put one foot in front of the other when the impact of around 400 pounds (plus gear) was coming down on those feet. The people who argue about the miles west of Albuquerque, easily discount the miles walked in the desert between desert California and Albuquerque. What he did under the circumstances as he walked them still floors me to think about. He walked on blisters, he walked on stress fractures, and he battled depression. And still he walked. He is a monument to tenacity!! What a privilege to make this journey in the company of nice people, and with inspiration of someone who did not give up. Glad you could join us. W Long Beach, Mississippi Introduction Hi everyone... I wanted to introduce myself. I'm Anne and I live in Florida. I started following Steve's story only a few months ago, but I have been a fan ever since. Steve, I know you are still fighting your own demons, and I know you've heard this before, but you really are an inspiration. I happen to be a psychologist and I happen to struggle with my own compulsive overeating issues. My husband is in the same boat, so our difficulties are often two-fold. One is in denial, the other is on the wagon so to speak. It's very difficult but I hope to find some strength here. Yes, therapists have their own issues too! :)Thank you for letting me be a part of this group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi! My name is , and I have joined due to my husband, (53), being diagnosed with Cirrhosis last week. He has had severe abdominal edema for the last two weeks. Now this has happened before, but diuretics helped before. They don't seem to be helping this time. In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, portal hypertension, and gastric & esophageal varices. From that, does anyone have an idea of how far this disease has progressed? The doc wanted to admit my husband, but for various reasons, he refused. He has spent SO much time in hospitals over the last few years, and he is not what one would call a 'cooperative patient', especially when he is in alot of pain. I suspect he will consent to being admitted later in the week. But my questions are many. What does he need to do at home to keep this from getting worse? It is not from alcohol, I know that, so it is not an issue for him to cut that out completely. He usually just has a drink on Christmas & New Year's Eve. Let me also add that he has been disabled for several years due to severe back issues, so pain has been long term. Two surgeries, a ton of blood clots and other issues have hospitalized him probably 15-20 over the last 8 or so years. I am a college student, as is my oldest daughter. My younger two are in high school, so our income is VERY limited. Even with Medicare paying 80%, the 20% is too much for us. Okay, I have said enough for now. Please let me know what ideas you may have about the progression and also what he can do at home until is willing to be admitted. Thank You in advance! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Welcome . My name is Bobby. I am a 45 year old man with end stage liver disease from alcoholism. I am so sorry that your husband is sick with liver disease. I am not a doctor. I have cirrhosis and portal hypertension, and also hepatic encephalopathy. One thing I do hear a lot is that people say " my husband has turned mean " or " my wife is being uncooperative " . These might be symptoms of hepatic encephalopathy. In cirrhosis, the liver becomes nodular and scarred. Each nodule is like a little tiny liver, separated from it's neighbors by scar tissue. The blood flow is slowed and there for it backs up in the portal vein , which is not built to take that much pressure. Off shoots then swell out of much smaller capillaries made to handle less pressure. These are called varicies. They can burst open and bleed. The mortality rate for the first bleed is 50%. His disease has progressed far. He needs a liver transplant. He needs a transplant evaluation and he needs it right away. Like yesterday. But transplants do not work for uncooperative people. They will not give you a donor liver if they do not believe that you are going to do everything in your power to live, survive, and treat that liver as good as you can. But I dont even know your husband and I think that he has ammonia in his system that is making him uncooperative. It is just a hunch. A guess. I think that almost every human if given a choice will choose life over death. I am so sorry to give you this much bad news, but his doctor should be explaining all of this to you. Too much sodium is going to make the fluid retention worse. His doctor has a 24 hour pager. They need to advise him on a sodium intake limit if they want one. Most of us with ESLD are put on a 2000 milligram a day restriction of salt. Salt is in places you dont expect it so you need to read labels. But again, please do nothing based on what I say, call his doctor and ask if it is true, and ask, no request that they advise you on sodium. And tell them you want a referral to a hepatologist at a transplant center near you for a transplant evaluation. Bobby Aragon, moderator, Liver Cirrhosis Support Yahoo. Introduction Hi! My name is , and I have joined due to my husband, (53), being diagnosed with Cirrhosis last week. He has had severe abdominal edema for the last two weeks. Now this has happened before, but diuretics helped before. They don't seem to be helping this time. In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, portal hypertension, and gastric & esophageal varices. From that, does anyone have an idea of how far this disease has progressed? The doc wanted to admit my husband, but for various reasons, he refused. He has spent SO much time in hospitals over the last few years, and he is not what one would call a 'cooperative patient', especially when he is in alot of pain. I suspect he will consent to being admitted later in the week. But my questions are many. What does he need to do at home to keep this from getting worse? It is not from alcohol, I know that, so it is not an issue for him to cut that out completely. He usually just has a drink on Christmas & New Year's Eve. Let me also add that he has been disabled for several years due to severe back issues, so pain has been long term. Two surgeries, a ton of blood clots and other issues have hospitalized him probably 15-20 over the last 8 or so years. I am a college student, as is my oldest daughter. My younger two are in high school, so our income is VERY limited. Even with Medicare paying 80%, the 20% is too much for us. Okay, I have said enough for now. Please let me know what ideas you may have about the progression and also what he can do at home until is willing to be admitted. Thank You in advance! <!-- #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line-height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text-decoration:none;} --> <!-- #ygrp-sponsor #ygrp-lc{ font-family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp-lc .ad{ margin-bottom:10px;padding:0 0;} --> <!-- #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line-height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp-vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left{ float:left;white-space:nowrap;} ..bld{font-weight:bold;} #ygrp-grft{ font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font-family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-reco { margin-bottom:20px;padding:0px;} #ygrp-reco #reco-head { font-weight:bold;color:#ff7900;} #reco-grpname{ font-weight:bold;margin-top:10px;} #reco-category{ font-size:77%;} #reco-desc{ font-size:77%;} #ygrp-vital{ background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-transform:upp\ ercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font-weight:bold;color:#ff7900;float:right;width:2em;text-align:right;padding-ri\ ght:.5em;} #ygrp-vital ul li .cat{ font-weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style-type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background-color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font-weight:bold;color:#628c2a;font-size:100%;line-height:122%\ ;} #ygrp-sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} ..MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} ..replbq{margin:4;} --> ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! 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Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi Bobby, Thank you for the welcome. I am so sorry to hear of your diagnosis. I do appreciate your willingness to share you story and wisdom. I did want to clarify a couple of things. First, my husband has always been uncooperative when it comes to medical issues. This is nothing new. He is a severe diabetic and does not check his blood sugar regularly or take his meds. Also, currently he is without a medical doctor. Our doctor left his practice in Dec to devote all of his time to people without any medical insurance, and because my husband has Medicare, he cannot go see him. Our county is seriously in need of medical doctors and this is a crisis that has been going on for some time. I have gotten him approved to see a PA at a local doctor's office, and have been playing phone tag with the scheduling dept. I hope to get up with them tomorrow and get an appt scheduled asap. I know that my husband is not a good candidate for a transplant, not to mention I just don't think he would be willing to do it even if it was suggested. We have talked about it a bit. He is also very fearful of going under general anesthesia, so there are probably procedures he would not be willing to do anyway. I do think that he understands the gravity of his illness, and I am not sure how hard he is willing to fight. He has so many other medical issues going on and this has been a devastating slam for him mentally, emotionally and spiritually, not to mention of course, physically. He is wondering, if he is willing to be admitted, what procedures they would likely want to do. I am assuming a paracentesis is in order, but do you know what else? Also, do they do a paracentesis under general or local? What meds would they likely administer? I know the ER doc told us she wanted to start him on IV antibiotics to prevent peritonitis, but not sure what else. Thanks again for the welcome. I have lots of questions. =0) Bob Aragon wrote: Welcome . My name is Bobby. I am a 45 year old man with end stage liver disease from alcoholism. I am so sorry that your husband is sick with liver disease. I am not a doctor. I have cirrhosis and portal hypertension, and also hepatic encephalopathy. One thing I do hear a lot is that people say " my husband has turned mean " or " my wife is being uncooperative " . These might be symptoms of hepatic encephalopathy. In cirrhosis, the liver becomes nodular and scarred. Each nodule is like a little tiny liver, separated from it's neighbors by scar tissue. The blood flow is slowed and there for it backs up in the portal vein , which is not built to take that much pressure. Off shoots then swell out of much smaller capillaries made to handle less pressure. These are called varicies. They can burst open and bleed. The mortality rate for the first bleed is 50%. His disease has progressed far. He needs a liver transplant. He needs a transplant evaluation and he needs it right away. Like yesterday. But transplants do not work for uncooperative people. They will not give you a donor liver if they do not believe that you are going to do everything in your power to live, survive, and treat that liver as good as you can. But I dont even know your husband and I think that he has ammonia in his system that is making him uncooperative. It is just a hunch. A guess. I think that almost every human if given a choice will choose life over death. I am so sorry to give you this much bad news, but his doctor should be explaining all of this to you. Too much sodium is going to make the fluid retention worse. His doctor has a 24 hour pager. They need to advise him on a sodium intake limit if they want one. Most of us with ESLD are put on a 2000 milligram a day restriction of salt. Salt is in places you dont expect it so you need to read labels. But again, please do nothing based on what I say, call his doctor and ask if it is true, and ask, no request that they advise you on sodium. And tell them you want a referral to a hepatologist at a transplant center near you for a transplant evaluation. Bobby Aragon, moderator, Liver Cirrhosis Support Yahoo. Introduction Hi! My name is , and I have joined due to my husband, (53), being diagnosed with Cirrhosis last week. He has had severe abdominal edema for the last two weeks. Now this has happened before, but diuretics helped before. They don't seem to be helping this time. In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, portal hypertension, and gastric & esophageal varices. From that, does anyone have an idea of how far this disease has progressed? The doc wanted to admit my husband, but for various reasons, he refused. He has spent SO much time in hospitals over the last few years, and he is not what one would call a 'cooperative patient', especially when he is in alot of pain. I suspect he will consent to being admitted later in the week. But my questions are many. What does he need to do at home to keep this from getting worse? It is not from alcohol, I know that, so it is not an issue for him to cut that out completely. He usually just has a drink on Christmas & New Year's Eve. Let me also add that he has been disabled for several years due to severe back issues, so pain has been long term. Two surgeries, a ton of blood clots and other issues have hospitalized him probably 15-20 over the last 8 or so years. I am a college student, as is my oldest daughter. My younger two are in high school, so our income is VERY limited. Even with Medicare paying 80%, the 20% is too much for us. Okay, I have said enough for now. Please let me know what ideas you may have about the progression and also what he can do at home until is willing to be admitted. Thank You in advance! #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line-height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text-decoration:none;} --> #ygrp-sponsor #ygrp-lc{ font-family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp-lc .ad{ margin-bottom:10px;padding:0 0;} --> #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line-height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp-vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left{ float:left;white-space:nowrap;} ..bld{font-weight:bold;} #ygrp-grft{ font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font-family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-reco { margin-bottom:20px;padding:0px;} #ygrp-reco #reco-head { font-weight:bold;color:#ff7900;} #reco-grpname{ font-weight:bold;margin-top:10px;} #reco-category{ font-size:77%;} #reco-desc{ font-size:77%;} #ygrp-vital{ background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-transform:upp\ ercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font-weight:bold;color:#ff7900;float:right;width:2em;text-align:right;padding-ri\ ght:.5em;} #ygrp-vital ul li .cat{ font-weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style-type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background-color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font-weight:bold;color:#628c2a;font-size:100%;line-height:122%\ ;} #ygrp-sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} ..MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} ..replbq{margin:4;} --> ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! 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Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 , I am glad you didn't take offense at me being so frank with you. It is shocking that so many who join here have been told so little about the true nature of where they are in the progression of their disease, it makes me wonder where many doctors get their degrees. It is very frustrating. There is a procedure that they sometimes do when people have very high portal pressure that can relieve some of it. It is called TIPS. TransJugular intrahepaticShunt. They go in through the Jugular and using a long catheter they insert a wire cage inside the liver to redirect some blood flow to a different vein, away from the portal vein. I will find a good link for you on the subject. This can sometimes buy some time. The really bad news is that this is a almost always fatal disease without a transplant, and either you will need the services of a good hepatologist, and transplant center or hospice. He at least deserves to be made as comfortable as possible, and have the complications managed. Does it ever seem if he is not the same to you from a mental standpoint? You will want to watch out for early signs of hepatic encephalopathy, especially if he has a big spleen, because that is a lot of blood that is not gonna get cleaned up enough. This is my problem. I take lactulose to manage my enceph. But it is a battle. A daily struggle to have as many bowel movements as possible. I fought with my wife all day today , and it is because I was losing the battle all day. I am hoping for a better night. I will post another in a few minutes. Love Bobby P S MaC, thanks, interesting stuff,,huh?!?!? Sent via BlackBerry from T-Mobile Re: Introduction Hi Bobby, Thank you for the welcome. I am so sorry to hear of your diagnosis. I do appreciate your willingness to share you story and wisdom. I did want to clarify a couple of things. First, my husband has always been uncooperative when it comes to medical issues. This is nothing new. He is a severe diabetic and does not check his blood sugar regularly or take his meds. Also, currently he is without a medical doctor. Our doctor left his practice in Dec to devote all of his time to people without any medical insurance, and because my husband has Medicare, he cannot go see him. Our county is seriously in need of medical doctors and this is a crisis that has been going on for some time. I have gotten him approved to see a PA at a local doctor's office, and have been playing phone tag with the scheduling dept. I hope to get up with them tomorrow and get an appt scheduled asap. I know that my husband is not a good candidate for a transplant, not to mention I just don't think he would be willing to do it even if it was suggested. We have talked about it a bit. He is also very fearful of going under general anesthesia, so there are probably procedures he would not be willing to do anyway. I do think that he understands the gravity of his illness, and I am not sure how hard he is willing to fight. He has so many other medical issues going on and this has been a devastating slam for him mentally, emotionally and spiritually, not to mention of course, physically. He is wondering, if he is willing to be admitted, what procedures they would likely want to do. I am assuming a paracentesis is in order, but do you know what else? Also, do they do a paracentesis under general or local? What meds would they likely administer? I know the ER doc told us she wanted to start him on IV antibiotics to prevent peritonitis, but not sure what else. Thanks again for the welcome. I have lots of questions. =0) Bob Aragon <robwalkingeagle@ <mailto:robwalkingeagle%40yahoo.com> yahoo.com> wrote: Welcome . My name is Bobby. I am a 45 year old man with end stage liver disease from alcoholism. I am so sorry that your husband is sick with liver disease. I am not a doctor. I have cirrhosis and portal hypertension, and also hepatic encephalopathy. One thing I do hear a lot is that people say " my husband has turned mean " or " my wife is being uncooperative " . These might be symptoms of hepatic encephalopathy. In cirrhosis, the liver becomes nodular and scarred. Each nodule is like a little tiny liver, separated from it's neighbors by scar tissue. The blood flow is slowed and there for it backs up in the portal vein , which is not built to take that much pressure. Off shoots then swell out of much smaller capillaries made to handle less pressure. These are called varicies. They can burst open and bleed. The mortality rate for the first bleed is 50%. His disease has progressed far. He needs a liver transplant. He needs a transplant evaluation and he needs it right away. Like yesterday. But transplants do not work for uncooperative people. They will not give you a donor liver if they do not believe that you are going to do everything in your power to live, survive, and treat that liver as good as you can. But I dont even know your husband and I think that he has ammonia in his system that is making him uncooperative. It is just a hunch. A guess. I think that almost every human if given a choice will choose life over death. I am so sorry to give you this much bad news, but his doctor should be explaining all of this to you. Too much sodium is going to make the fluid retention worse. His doctor has a 24 hour pager. They need to advise him on a sodium intake limit if they want one. Most of us with ESLD are put on a 2000 milligram a day restriction of salt. Salt is in places you dont expect it so you need to read labels. But again, please do nothing based on what I say, call his doctor and ask if it is true, and ask, no request that they advise you on sodium. And tell them you want a referral to a hepatologist at a transplant center near you for a transplant evaluation. Bobby Aragon, moderator, Liver Cirrhosis Support Yahoo. Introduction Hi! My name is , and I have joined due to my husband, (53), being diagnosed with Cirrhosis last week. He has had severe abdominal edema for the last two weeks. Now this has happened before, but diuretics helped before. They don't seem to be helping this time. In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, portal hypertension, and gastric & esophageal varices. From that, does anyone have an idea of how far this disease has progressed? The doc wanted to admit my husband, but for various reasons, he refused. He has spent SO much time in hospitals over the last few years, and he is not what one would call a 'cooperative patient', especially when he is in alot of pain. I suspect he will consent to being admitted later in the week. But my questions are many. What does he need to do at home to keep this from getting worse? It is not from alcohol, I know that, so it is not an issue for him to cut that out completely. He usually just has a drink on Christmas & New Year's Eve. Let me also add that he has been disabled for several years due to severe back issues, so pain has been long term. Two surgeries, a ton of blood clots and other issues have hospitalized him probably 15-20 over the last 8 or so years. I am a college student, as is my oldest daughter. My younger two are in high school, so our income is VERY limited. Even with Medicare paying 80%, the 20% is too much for us. Okay, I have said enough for now. Please let me know what ideas you may have about the progression and also what he can do at home until is willing to be admitted. 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Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi again Bobby! Thanks for getting back to me so quickly. I appreciate your frankness actually. I don't want to be in the dark. Thankfully I guess, I have a background in nursing (almost became an RN), so a lot of this is familiar to me, tho it has been a few years since I was in school. I remember learning about TIPS, of course, it was all so clinical. Never thought it would ever be referenced to a loved one, you know? Actually the doc in the ER thought he might be in early stages? I thought that sounded nuts with the varices and enlarged spleen. What do you think? So what is the deal with the BMs? I assume to get toxins out of the body? What does the Lactulose do? Break down food enzymes? You asked about his mental standpoint. There are times that I think he seems confused, but it is usually when I am trying to wake him up. Once he is awake, he seems clear. Tho he did tell me today that he has noticed that he is not getting his words out likes he plans sometimes. It is not noticeable to me. We spend virtually all our time together (by choice), so I am very attuned to his body and signals from him. I have made our kids aware of things to look for. Fever, confusion/disorientation, coughing or vomiting blood, that any of those things are a sign that 911 needs to be called. The ascites is terrible. The scales at the ER appeared to be 30-40 pounds more than we expected. Now he is a big guy, but not that big. I have thought about hospice, but I have no comprehension of how long we are talking. Doesn't it have to be guessed to be within six months? Do you really think that could be all the time we are talking about? I am silently freaking out. He told the kids that he might only have six months and I told them I thought it would be a lot longer, but I have no way of knowing. I just wish I knew more. We do have to get him into a doc quick. Again, I am hoping to get him scheduled with a PA tomorrow. BTW, I am very impressed! You type quite well with a Blackberry. I would think that would take a lot longer. Thank you for taking the time to send me that message. =0) robwalkingeagle@... wrote: , I am glad you didn't take offense at me being so frank with you. It is shocking that so many who join here have been told so little about the true nature of where they are in the progression of their disease, it makes me wonder where many doctors get their degrees. It is very frustrating. There is a procedure that they sometimes do when people have very high portal pressure that can relieve some of it. It is called TIPS. TransJugular intrahepaticShunt. They go in through the Jugular and using a long catheter they insert a wire cage inside the liver to redirect some blood flow to a different vein, away from the portal vein. I will find a good link for you on the subject. This can sometimes buy some time. The really bad news is that this is a almost always fatal disease without a transplant, and either you will need the services of a good hepatologist, and transplant center or hospice. He at least deserves to be made as comfortable as possible, and have the complications managed. Does it ever seem if he is not the same to you from a mental standpoint? You will want to watch out for early signs of hepatic encephalopathy, especially if he has a big spleen, because that is a lot of blood that is not gonna get cleaned up enough. This is my problem. I take lactulose to manage my enceph. But it is a battle. A daily struggle to have as many bowel movements as possible. I fought with my wife all day today , and it is because I was losing the battle all day. I am hoping for a better night. I will post another in a few minutes. Love Bobby P S MaC, thanks, interesting stuff,,huh?!?!? Sent via BlackBerry from T-Mobile Re: Introduction Hi Bobby, Thank you for the welcome. I am so sorry to hear of your diagnosis. I do appreciate your willingness to share you story and wisdom. I did want to clarify a couple of things. First, my husband has always been uncooperative when it comes to medical issues. This is nothing new. He is a severe diabetic and does not check his blood sugar regularly or take his meds. Also, currently he is without a medical doctor. Our doctor left his practice in Dec to devote all of his time to people without any medical insurance, and because my husband has Medicare, he cannot go see him. Our county is seriously in need of medical doctors and this is a crisis that has been going on for some time. I have gotten him approved to see a PA at a local doctor's office, and have been playing phone tag with the scheduling dept. I hope to get up with them tomorrow and get an appt scheduled asap. I know that my husband is not a good candidate for a transplant, not to mention I just don't think he would be willing to do it even if it was suggested. We have talked about it a bit. He is also very fearful of going under general anesthesia, so there are probably procedures he would not be willing to do anyway. I do think that he understands the gravity of his illness, and I am not sure how hard he is willing to fight. He has so many other medical issues going on and this has been a devastating slam for him mentally, emotionally and spiritually, not to mention of course, physically. He is wondering, if he is willing to be admitted, what procedures they would likely want to do. I am assuming a paracentesis is in order, but do you know what else? Also, do they do a paracentesis under general or local? What meds would they likely administer? I know the ER doc told us she wanted to start him on IV antibiotics to prevent peritonitis, but not sure what else. Thanks again for the welcome. I have lots of questions. =0) Bob Aragon yahoo.com> wrote: Welcome . My name is Bobby. I am a 45 year old man with end stage liver disease from alcoholism. I am so sorry that your husband is sick with liver disease. I am not a doctor. I have cirrhosis and portal hypertension, and also hepatic encephalopathy. One thing I do hear a lot is that people say " my husband has turned mean " or " my wife is being uncooperative " . These might be symptoms of hepatic encephalopathy. In cirrhosis, the liver becomes nodular and scarred. Each nodule is like a little tiny liver, separated from it's neighbors by scar tissue. The blood flow is slowed and there for it backs up in the portal vein , which is not built to take that much pressure. Off shoots then swell out of much smaller capillaries made to handle less pressure. These are called varicies. They can burst open and bleed. The mortality rate for the first bleed is 50%. His disease has progressed far. He needs a liver transplant. He needs a transplant evaluation and he needs it right away. Like yesterday. But transplants do not work for uncooperative people. They will not give you a donor liver if they do not believe that you are going to do everything in your power to live, survive, and treat that liver as good as you can. But I dont even know your husband and I think that he has ammonia in his system that is making him uncooperative. It is just a hunch. A guess. I think that almost every human if given a choice will choose life over death. I am so sorry to give you this much bad news, but his doctor should be explaining all of this to you. Too much sodium is going to make the fluid retention worse. His doctor has a 24 hour pager. They need to advise him on a sodium intake limit if they want one. Most of us with ESLD are put on a 2000 milligram a day restriction of salt. Salt is in places you dont expect it so you need to read labels. But again, please do nothing based on what I say, call his doctor and ask if it is true, and ask, no request that they advise you on sodium. And tell them you want a referral to a hepatologist at a transplant center near you for a transplant evaluation. Bobby Aragon, moderator, Liver Cirrhosis Support Yahoo. Introduction Hi! My name is , and I have joined due to my husband, (53), being diagnosed with Cirrhosis last week. He has had severe abdominal edema for the last two weeks. Now this has happened before, but diuretics helped before. They don't seem to be helping this time. In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, portal hypertension, and gastric & esophageal varices. From that, does anyone have an idea of how far this disease has progressed? The doc wanted to admit my husband, but for various reasons, he refused. He has spent SO much time in hospitals over the last few years, and he is not what one would call a 'cooperative patient', especially when he is in alot of pain. I suspect he will consent to being admitted later in the week. But my questions are many. What does he need to do at home to keep this from getting worse? It is not from alcohol, I know that, so it is not an issue for him to cut that out completely. He usually just has a drink on Christmas & New Year's Eve. Let me also add that he has been disabled for several years due to severe back issues, so pain has been long term. Two surgeries, a ton of blood clots and other issues have hospitalized him probably 15-20 over the last 8 or so years. I am a college student, as is my oldest daughter. My younger two are in high school, so our income is VERY limited. Even with Medicare paying 80%, the 20% is too much for us. Okay, I have said enough for now. Please let me know what ideas you may have about the progression and also what he can do at home until is willing to be admitted. Thank You in advance! #ygrp-mkp{ border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} #ygrp-mkp hr{ border:1px solid #d8d8d8;} #ygrp-mkp #hd{ color:#628c2a;font-size:85%;font-weight:bold;line-height:122%;margin:10px 0px;} #ygrp-mkp #ads{ margin-bottom:10px;} #ygrp-mkp .ad{ padding:0 0;} #ygrp-mkp .ad a{ color:#0000ff;text-decoration:none;} --> #ygrp-sponsor #ygrp-lc{ font-family:Arial;} #ygrp-sponsor #ygrp-lc #hd{ margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;} #ygrp-sponsor #ygrp-lc .ad{ margin-bottom:10px;padding:0 0;} --> #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line-height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0;} #ygrp-tpmsgs{ font-family:Arial; clear:both;} #ygrp-vitnav{ padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} #ygrp-vitnav a{ padding:0 1px;} #ygrp-actbar{ clear:both;margin:25px 0;white-space:nowrap;color:#666;text-align:right;} #ygrp-actbar .left{ float:left;white-space:nowrap;} ..bld{font-weight:bold;} #ygrp-grft{ font-family:Verdana;font-size:77%;padding:15px 0;} #ygrp-ft{ font-family:verdana;font-size:77%;border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px;} #ygrp-reco { margin-bottom:20px;padding:0px;} #ygrp-reco #reco-head { font-weight:bold;color:#ff7900;} #reco-grpname{ font-weight:bold;margin-top:10px;} #reco-category{ font-size:77%;} #reco-desc{ font-size:77%;} #ygrp-vital{ background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;} #ygrp-vital #vithd{ font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text-transform:upp\ ercase;} #ygrp-vital ul{ padding:0;margin:2px 0;} #ygrp-vital ul li{ list-style-type:none;clear:both;border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font-weight:bold;color:#ff7900;float:right;width:2em;text-align:right;padding-ri\ ght:.5em;} #ygrp-vital ul li .cat{ font-weight:bold;} #ygrp-vital a{ text-decoration:none;} #ygrp-vital a:hover{ text-decoration:underline;} #ygrp-sponsor #hd{ color:#999;font-size:77%;} #ygrp-sponsor #ov{ padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} #ygrp-sponsor #ov ul{ padding:0 0 0 8px;margin:0;} #ygrp-sponsor #ov li{ list-style-type:square;padding:6px 0;font-size:77%;} #ygrp-sponsor #ov li a{ text-decoration:none;font-size:130%;} #ygrp-sponsor #nc{ background-color:#eee;margin-bottom:20px;padding:0 8px;} #ygrp-sponsor .ad{ padding:8px 0;} #ygrp-sponsor .ad #hd1{ font-family:Arial;font-weight:bold;color:#628c2a;font-size:100%;line-height:122%\ ;} #ygrp-sponsor .ad a{ text-decoration:none;} #ygrp-sponsor .ad a:hover{ text-decoration:underline;} #ygrp-sponsor .ad p{ margin:0;} o{font-size:0;} ..MsoNormal{ margin:0 0 0 0;} #ygrp-text tt{ font-size:120%;} blockquote{margin:0 0 0 4px;} ..replbq{margin:4;} --> __________________________________________________________ Be a better friend, newshound, and know-it-all with Yahoo! 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Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi and welcome to the group. I am really surprised that the ER doctor did not explain how dangerous it is for your hubby to have the portal hypertention with at least 2 varices. This is life threatening as he can quickly bleed to death without warning until those varices are banded. I too am the most uncooperative patient, it comes from spending way too much time in hospitals. Please get your husband to his gastro or hepatologist asap. He is very ill and playing with loaded gun. Youve been added to my prayer list. God Bless, Debra > > Hi! > My name is , and I have joined due to my husband, (53), > being diagnosed with Cirrhosis last week. He has had severe abdominal > edema for the last two weeks. Now this has happened before, but > diuretics helped before. They don't seem to be helping this time. > In the ER on Tuesday, the CT showed Cirrhosis, an enlarged spleen, > portal hypertension, and gastric & esophageal varices. From that, > does anyone have an idea of how far this disease has progressed? > The doc wanted to admit my husband, but for various reasons, he > refused. He has spent SO much time in hospitals over the last few > years, and he is not what one would call a 'cooperative patient', > especially when he is in alot of pain. > I suspect he will consent to being admitted later in the week. But my > questions are many. What does he need to do at home to keep this from > getting worse? It is not from alcohol, I know that, so it is not an > issue for him to cut that out completely. He usually just has a drink > on Christmas & New Year's Eve. > Let me also add that he has been disabled for several years due to > severe back issues, so pain has been long term. Two surgeries, a ton > of blood clots and other issues have hospitalized him probably 15- 20 > over the last 8 or so years. > I am a college student, as is my oldest daughter. My younger two are > in high school, so our income is VERY limited. Even with Medicare > paying 80%, the 20% is too much for us. > Okay, I have said enough for now. Please let me know what ideas you > may have about the progression and also what he can do at home until > is willing to be admitted. > Thank You in advance! > > Quote Link to comment Share on other sites More sharing options...
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