Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I am so new to all of this. I too take lasix 10mg twice a day for the large (elephant) feet I have. So I'm really not very knowledgable but I want to let you know that I am praying for your husband to get better and for you too. Take care and keep us updated. ________________________________ To: livercirrhosissupport Sent: Monday, January 23, 2012 8:33 AM Subject: I need help please.  Was wondering if anyone can tell me anything about Stage 4 Liver Failure- Cirrhosis. My husband was admitted to hospital on the 4th of Jan. At the time he had horrible pitting edema and was swollen up beyond imagination. They have been giving him 80mg of Lasix day and night to keep the swelling down...and he looks better. His stomach was severely distended from Ascites, but they did an ultrasound and he has barely any fluid in his abdomen. It is softer and more pliable now, and doesn't quite look ready to explode. He spent 2 weeks in ICU (Was on a ventilator for several days). He had out of control ammonia levels (98 when he first came in). They have to keep giving him lactulose to try and keep the number down. Think it is at 40ish about now. He also has been having complications from pneumonia and they say his kidneys are trying to fail...and they are giving him albumin to try and " kickstart " them. Right now they say that his liver is " decompensated " and that they are crossing their fingers that they can get it to compensate again. Has anyone experienced anything similar? He is still in the hospital, but currently in the DOU (One step down from ICU). He has a lot of trouble speaking, failed his swallow evaluation, has a feeding tube in his nose, and is often confused and disoriented when I go to see him. They say this is from the ammonia level. He will have been in the hospital 3 days on Wednesday. I just want to know what this means, what might happen, find some information. Any help would be greatly appreciated. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 Hi. My name is Bobby Aragon. I was both a caretaker for a dear loved one who passed away from liver disease, and I also have end stage liver disease from alcoholism. I will try to clear up a couple of things for you. First, stage 4 is a biopsy finding, not a statement on how the patient is doing. It is like saying " diabetes " . A person can be diagnosed with diabetes, but that does not say how the patient is doing. Liver failure is another story altogether. Liver failure means that the liver is not working all the way. The question to ask the doctors is this " is he a possible liver transplant candidate? "   Stage 4 is considered the final stage of liver disease, aka " end stage liver disease " . The only treatment for ESLD is a liver transplant. Have they told you this? Story of my loved one- http://sweetlorrane.blogspot.com/ good luck.        Bobby ________________________________ To: livercirrhosissupport Sent: Monday, January 23, 2012 8:33 AM Subject: I need help please.  Was wondering if anyone can tell me anything about Stage 4 Liver Failure- Cirrhosis. My husband was admitted to hospital on the 4th of Jan. At the time he had horrible pitting edema and was swollen up beyond imagination. They have been giving him 80mg of Lasix day and night to keep the swelling down...and he looks better. His stomach was severely distended from Ascites, but they did an ultrasound and he has barely any fluid in his abdomen. It is softer and more pliable now, and doesn't quite look ready to explode. He spent 2 weeks in ICU (Was on a ventilator for several days). He had out of control ammonia levels (98 when he first came in). They have to keep giving him lactulose to try and keep the number down. Think it is at 40ish about now. He also has been having complications from pneumonia and they say his kidneys are trying to fail...and they are giving him albumin to try and " kickstart " them. Right now they say that his liver is " decompensated " and that they are crossing their fingers that they can get it to compensate again. Has anyone experienced anything similar? He is still in the hospital, but currently in the DOU (One step down from ICU). He has a lot of trouble speaking, failed his swallow evaluation, has a feeding tube in his nose, and is often confused and disoriented when I go to see him. They say this is from the ammonia level. He will have been in the hospital 3 days on Wednesday. I just want to know what this means, what might happen, find some information. Any help would be greatly appreciated. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2012 Report Share Posted January 23, 2012 I'm just on the edge of having to learn all about these things. I do know that the ammonia effects just about everything and brings on encephalopathy. That's the reason for confusion. How long have you known that your husband had liver disease?? I will pray that your husband can make a full recovery from this very bad turn. Gloria ________________________________ Was wondering if anyone can tell me anything about Stage 4 Liver Failure- Cirrhosis. My husband was admitted to hospital on the 4th of Jan. At the time he had horrible pitting edema and was swollen up beyond imagination. They have been giving him 80mg of Lasix day and night to keep the swelling down...and he looks better. His stomach was severely distended from Ascites, but they did an ultrasound and he has barely any fluid in his abdomen. It is softer and more pliable now, and doesn't quite look ready to explode. He spent 2 weeks in ICU (Was on a ventilator for several days). He had out of control ammonia levels (98 when he first came in). They have to keep giving him lactulose to try and keep the number down. Think it is at 40ish about now. He also has been having complications from pneumonia and they say his kidneys are trying to fail...and they are giving him albumin to try and " kickstart " them. Right now they say that his liver is " decompensated " and that they are crossing their fingers that they can get it to compensate again. Has anyone experienced anything similar? He is still in the hospital, but currently in the DOU (One step down from ICU). He has a lot of trouble speaking, failed his swallow evaluation, has a feeding tube in his nose, and is often confused and disoriented when I go to see him. They say this is from the ammonia level. He will have been in the hospital 3 days on Wednesday. I just want to know what this means, what might happen, find some information. Any help would be greatly appreciated. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 Thankyou Gloria and Moonlight. I realized I had made a mistake on the post I made. He has been in the hospital for 3 weeks not 3 days. (Lack of Caffeine talking). He was diagnosed with the stage 4 liver failure in the hospital. Thanks for your kind words and well wishes, sometimes you really just need someone to talk to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2012 Report Share Posted January 24, 2012 You bet ya - everybody needs somebody at sometime. LOL I think that everyone of us here has just needed to talk to someone somewhere. So come here often and you will find help. ________________________________  Thankyou Gloria and Moonlight. I realized I had made a mistake on the post I made. He has been in the hospital for 3 weeks not 3 days. (Lack of Caffeine talking). He was diagnosed with the stage 4 liver failure in the hospital. Thanks for your kind words and well wishes, sometimes you really just need someone to talk to. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2012 Report Share Posted January 26, 2012 Bobby, They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? Love, and prayers , Bobby ________________________________ To: livercirrhosissupport Sent: Thursday, January 26, 2012 7:00 PM Subject: Re: I need help please.  Bobby, They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months.  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Sunday, January 29, 2012 4:38 AM >Subject: Re: I need help please. > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > >Love, and prayers , Bobby > >________________________________ > >To: livercirrhosissupport >Sent: Thursday, January 26, 2012 7:00 PM >Subject: Re: I need help please. > > > > >Bobby, > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Another thing that would be difficult, is that everyone is not the same!! For me, I've been ESLD knowingly for 3 years now. I have met or spoken with others that have been in that stage 4, for 15 yrs or more. For me, the cirrhosis would have been halted once the Hep C virus had been halted; but, I'm 1 of a small percentage of cirrhotic patients that went on to liver cancer. Actually, none of my Drs have used the word " terminal " at any time. But, that is likely because they know that I know the hopes. Like the ad on TV for the Cancer Centers.... definitely, there is nothing stamped on my feet. I've been aware about the cancer since early Sept and so far have not have even an iota of a symptom. The only reason I know about it in fact, is because I'd already been operated on for the cancer and then it came back in 15 months. If there had been no reason to check your Dad, then likely he was already sick before the 1st test. Our liver is the quietest organs in our body. It doesn't yell at the 1st sign of trouble. It waits until the last. Gloria ________________________________  Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months.  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Sunday, January 29, 2012 4:38 AM >Subject: Re: I need help please. > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > >Love, and prayers , Bobby > >________________________________ > >To: livercirrhosissupport >Sent: Thursday, January 26, 2012 7:00 PM >Subject: Re: I need help please. > > > > >Bobby, > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. SUE To: " livercirrhosissupport " <livercirrhosissupport > Sent: Sunday, January 29, 2012 6:04 AM Subject: Re: I need help please.  Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months.  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Sunday, January 29, 2012 4:38 AM >Subject: Re: I need help please. > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > >Love, and prayers , Bobby > >________________________________ > >To: livercirrhosissupport >Sent: Thursday, January 26, 2012 7:00 PM >Subject: Re: I need help please. > > > > >Bobby, > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 I don't want to interrupt this thread. Just reading all the emails for the last couple of days has made my eyes tear, and I don't have any tears, eyes too dry. But there is something I want to inform everybody about and I don't know how to start a thread. I have known for quite some time that some of my itching was being caused by something other than the cirrhosis. When I went to MN last May for my mother's funeral, I came home to a washer so full of soap it took 4 loads of washing nothing, just putting in a cup of vinegar in each load to get rid of some of the soap. The man I was living with washed his own clothes and had always used too much soap, had a rash on a good part of his body when I met him from all the soap left in his clothes. I got him to cut it down and the rash went away. But he still used too much, so I started running my clothes and the household laundry through two whole cycles to make sure the soap got out or so I thought. Well, after moving, getting my own new washer and dryer hooked up, using only about 2 T of soap to wash my clothes and none sometimes for my towels (This had been recommended by an article I read on how to do the laundry, especially with these new concentrated detergents) my itching is considerably less. Last week, it was cold here, so I put on a pair of leggings which I hadn't used since moving. I started itching like crazy again. When I took them off, the black leggings had white spots all over them, soap which had come out of them when I was wearing them. When I first mentioned seeing this white stuff on my black clothes I was told it was probably from the elastic they put in some of our clothes to give them a better fit. In some cases it may be, especially in older clothes, but if you wear dark clothes and notice white little spots all over them, and especially in areas where they are rubbed a lot, check your washer. Run some vinegar through it and make sure you see it after the wash cycle starts. I know some of you probably don't have this problem, but the regular itching from the cirrhosis is bad enough, we don't need to add to it by having soap in our clothes. The itching is a vicious cycle. If you itch enough that you bleed, then it forms a scab, the scab is full of the toxins which caused the itching in the first place, so causes more itching, bigger sore, and on and on. Until my washer was hooked up which took about 2 months, I had to go to the laundromat. The owner told me which machines to use, the older ones as they use more water and more apt to get the soap out, but they were still full of soap. If you don't have your own washer, do anything you can to get one. Test your clothes by putting them in the kitchen sink and swishing them around. You will probably see soap suds. Hope this helps someone. Jan > > > Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. > I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting. Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. > > SUE > > > To: " livercirrhosissupport " <livercirrhosissupport > > Sent: Sunday, January 29, 2012 6:04 AM > Subject: Re: I need help please. > > > > Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, > should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. > > A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was > alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. > > i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. > > > Sincerely, > E. Bassett > >>________________________________ >> >>To: " livercirrhosissupport " <livercirrhosissupport > >>Sent: Sunday, January 29, 2012 4:38 AM >>Subject: Re: I need help please. >> >> >> >>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >> >>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >> >>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >> >>Love, and prayers , Bobby >> >>________________________________ >> >>To: livercirrhosissupport >>Sent: Thursday, January 26, 2012 7:00 PM >>Subject: Re: I need help please. >> >> >> >> >>Bobby, >> >>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Oh Sue - that is sooo sad!! One waits and prays for a transplant and I don't hear of the ones it didn't work for. It is a ugly disease for sure. I did 2 Hep C treatments and a liver resection in Apr 2010. However, only 15 months later, the cancer is back. I am not willing to go through anymore chemo. Those 2 treatments did me in. Right now I'm working to try and catch my work up so that I can get rid of my business and have time to lay back under the awning of my RV this summer. At least, that's the plan in my mind. Gloria ________________________________  Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. SUE To: " livercirrhosissupport " <livercirrhosissupport > Sent: Sunday, January 29, 2012 6:04 AM Subject: Re: I need help please.  Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months.  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Sunday, January 29, 2012 4:38 AM >Subject: Re: I need help please. > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > >Love, and prayers , Bobby > >________________________________ > >To: livercirrhosissupport >Sent: Thursday, January 26, 2012 7:00 PM >Subject: Re: I need help please. > > > > >Bobby, > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Jan My son was born with excemafrom head to toe!! It runs in the family and he was blessed with a bad case. Because I had some cousins that had it bad, I knew that I would be lucky if I could use the so-called 99.9% pure products. I couldn't. I was fortunate enough to buy a small washer and dryer and hook it up in my apartment. To start with, absolutely no one was every allowed to run a load through and use those Bounce sheets and they had to use my laundry detergent. You don't want to know what those dryer sheets did to the son. When it came to laundry detergent, I finally started buying it from one of the multi-level businesses. Then, he didn't have problems. Absolutely nothing that had a scent to it, was another huge thing to be aware of. Baby powder or baby oil were definitely out!! He had cradle cap well into his teens, when it was up to him to be careful. His feet - oh his feet... He would wear and probably still does, sneakers all the time. The sweat etc caused him to have big hunks of dried skin between his toes. It was ugly. I was told when he was still a baby, that it was best that he had bare feet around the house. I ran out of disposable diapers at a time and so started using the cloth ones I had. Well, my mother forgot to tell me that 4 out of 5 of us were allergic to rubber pants. I thought that I had permanently disfigured his little private parts. To this very day, there are only 2 laundry products that I can use and thank heavens they are liquid now. I have not and will not use any dryer sheets. I was shown an absolutely wonderful way of softening my clothes. You take an old cloth of some kind, usually a bit bigger than a washcloth and just pore some cheap fabric softener on it and throw it in the dryer. That method has never bothered either one of us. I've had to go back on my anti-histamines because of the itchy. I buy a product that is dirt cheap and is the exact same as Chlortriplon. It goes a long way to stopping the itch. Gloria ________________________________  I don't want to interrupt this thread. Just reading all the emails for the last couple of days has made my eyes tear, and I don't have any tears, eyes too dry. But there is something I want to inform everybody about and I don't know how to start a thread. I have known for quite some time that some of my itching was being caused by something other than the cirrhosis. When I went to MN last May for my mother's funeral, I came home to a washer so full of soap it took 4 loads of washing nothing, just putting in a cup of vinegar in each load to get rid of some of the soap. The man I was living with washed his own clothes and had always used too much soap, had a rash on a good part of his body when I met him from all the soap left in his clothes. I got him to cut it down and the rash went away. But he still used too much, so I started running my clothes and the household laundry through two whole cycles to make sure the soap got out or so I thought. Well, after moving, getting my own new washer and dryer hooked up, using only about 2 T of soap to wash my clothes and none sometimes for my towels (This had been recommended by an article I read on how to do the laundry, especially with these new concentrated detergents) my itching is considerably less. Last week, it was cold here, so I put on a pair of leggings which I hadn't used since moving. I started itching like crazy again. When I took them off, the black leggings had white spots all over them, soap which had come out of them when I was wearing them. When I first mentioned seeing this white stuff on my black clothes I was told it was probably from the elastic they put in some of our clothes to give them a better fit. In some cases it may be, especially in older clothes, but if you wear dark clothes and notice white little spots all over them, and especially in areas where they are rubbed a lot, check your washer. Run some vinegar through it and make sure you see it after the wash cycle starts. I know some of you probably don't have this problem, but the regular itching from the cirrhosis is bad enough, we don't need to add to it by having soap in our clothes. The itching is a vicious cycle. If you itch enough that you bleed, then it forms a scab, the scab is full of the toxins which caused the itching in the first place, so causes more itching, bigger sore, and on and on. Until my washer was hooked up which took about 2 months, I had to go to the laundromat. The owner told me which machines to use, the older ones as they use more water and more apt to get the soap out, but they were still full of soap. If you don't have your own washer, do anything you can to get one. Test your clothes by putting them in the kitchen sink and swishing them around. You will probably see soap suds. Hope this helps someone. Jan > > > Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. > I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. > > SUE > > > To: " livercirrhosissupport " <livercirrhosissupport > > Sent: Sunday, January 29, 2012 6:04 AM > Subject: Re: I need help please. > > > > Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, > should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. > > A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was > alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. > > i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. > > > Sincerely, > E. Bassett > >>________________________________ >> >>To: " livercirrhosissupport " <livercirrhosissupport > >>Sent: Sunday, January 29, 2012 4:38 AM >>Subject: Re: I need help please. >> >> >> >>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >> >>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >> >>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >> >>Love, and prayers , Bobby >> >>________________________________ >> >>To: livercirrhosissupport >>Sent: Thursday, January 26, 2012 7:00 PM >>Subject: Re: I need help please. >> >> >> >> >>Bobby, >> >>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2012 Report Share Posted January 29, 2012 Gloria, I can't use fabric softener of any kind, and most cleaning products. I had to get rid of my cleaning lady bi weekly because she insisted on using products with a strong smell to sterilize this place. I don't care if it is sterile, been living in a very unsanitary house for years, but can't take the smelly cleaning products, or aerosols, take my breath away. My allergies really started full fledged with the birth of my youngest son. He would shoot out a fountain every time I took off his diaper, so I sprayed with lysol or other spray product so it didn't smell up the couch. Eventually had to take the couch out of the house and give it away. I use All Free and Clear and it seems to work pretty good. My kids couldn't use baby powder either, broke out in a rash, and it made me sneeze. They have fumigated ou building twice now in the last two weeks and it is really making sick, first and then really tired, sleep most of the time and I can't find my inhaler. /the second time they supposedly used something different which is supposed to be for people like me, but still bothered. I belonged to one of those multilevel marketing companies which sold laundry products which didn't bother me, and they made the point in their sales presentation that everybody is allergic to laundry products if you use too much and then start sweating. Will itch like crazy. But I still had trouble with their fabric softener because of the scent. Why can't we have a scentless world? Jan > Jan > > My son was born with excemafrom head to toe!! It runs in the family and he was blessed with a bad case. Because I had some cousins that had it bad, I knew that I would be lucky if I could use the so-called 99.9% pure products. I couldn't. > > I was fortunate enough to buy a small washer and dryer and hook it up in my apartment. To start with, absolutely no one was every allowed to run a load through and use those Bounce sheets and they had to use my laundry detergent. You don't want to know what those dryer sheets did to the son. When it came to laundry detergent, I finally started buying it from one of the multi-level businesses. Then, he didn't have problems. Absolutely nothing that had a scent to it, was another huge thing to be aware of. Baby powder or baby oil were definitely out!! > > He had cradle cap well into his teens, when it was up to him to be careful. His feet - oh his feet... He would wear and probably still does, sneakers all the time. The sweat etc caused him to have big hunks of dried skin between his toes. It was ugly. I was told when he was still a baby, that it was best that he had bare feet around the house. I ran out of disposable diapers at a time and so started using the cloth ones I had. Well, my mother forgot to tell me that 4 out of 5 of us were allergic to rubber pants. I thought that I had permanently disfigured his little private parts. > > To this very day, there are only 2 laundry products that I can use and thank heavens they are liquid now. I have not and will not use any dryer sheets. I was shown an absolutely wonderful way of softening my clothes. You take an old cloth of some kind, usually a bit bigger than a washcloth and just pore some cheap fabric softener on it and throw it in the dryer. That method has never bothered either one of us. > > I've had to go back on my anti-histamines because of the itchy. I buy a product that is dirt cheap and is the exact same as Chlortriplon. It goes a long way to stopping the itch. > > Gloria > > > > ________________________________ > > > > > I don't want to interrupt this thread. Just reading all the emails > for the last couple of days has made my eyes tear, and I don't have > any tears, eyes too dry. But there is something I want to inform > everybody about and I don't know how to start a thread. > > I have known for quite some time that some of my itching was being > caused by something other than the cirrhosis. When I went to MN last > May for my mother's funeral, I came home to a washer so full of soap > it took 4 loads of washing nothing, just putting in a cup of vinegar > in each load to get rid of some of the soap. The man I was living > with washed his own clothes and had always used too much soap, had a > rash on a good part of his body when I met him from all the soap left > in his clothes. I got him to cut it down and the rash went away. But > he still used too much, so I started running my clothes and the > household laundry through two whole cycles to make sure the soap got > out or so I thought. Well, after moving, getting my own new washer > and dryer hooked up, using only about 2 T of soap to wash my clothes > and none sometimes for my towels (This had been recommended by an > article I read on how to do the laundry, especially with these new > concentrated detergents) my itching is considerably less. Last week, > it was cold here, so I put on a pair of leggings which I hadn't used > since moving. I started itching like crazy again. When I took them > off, the black leggings had white spots all over them, soap which had > come out of them when I was wearing them. When I first mentioned > seeing this white stuff on my black clothes I was told it was probably > from the elastic they put in some of our clothes to give them a better > fit. In some cases it may be, especially in older clothes, but if you > wear dark clothes and notice white little spots all over them, and > especially in areas where they are rubbed a lot, check your washer. > Run some vinegar through it and make sure you see it after the wash > cycle starts. I know some of you probably don't have this problem, > but the regular itching from the cirrhosis is bad enough, we don't > need to add to it by having soap in our clothes. The itching is a > vicious cycle. If you itch enough that you bleed, then it forms a > scab, the scab is full of the toxins which caused the itching in the > first place, so causes more itching, bigger sore, and on and on. > Until my washer was hooked up which took about 2 months, I had to go > to the laundromat. The owner told me which machines to use, the older > ones as they use more water and more apt to get the soap out, but they > were still full of soap. If you don't have your own washer, do > anything you can to get one. Test your clothes by putting them in the > kitchen sink and swishing them around. You will probably see soap > suds. Hope this helps someone. Jan > > >> >> >> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting. Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >> >> SUE >> >> >> To: " livercirrhosissupport " <livercirrhosissupport > >> Sent: Sunday, January 29, 2012 6:04 AM >> Subject: Re: I need help please. >> >> >> >> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, >> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >> >> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >> >> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >> >> >> Sincerely, >> E. Bassett >> >>>________________________________ >>> >>>To: " livercirrhosissupport " <livercirrhosissupport > >>>Sent: Sunday, January 29, 2012 4:38 AM >>>Subject: Re: I need help please. >>> >>> >>> >>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>> >>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>> >>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>> >>>Love, and prayers , Bobby >>> >>>________________________________ >>> >>>To: livercirrhosissupport >>>Sent: Thursday, January 26, 2012 7:00 PM >>>Subject: Re: I need help please. >>> >>> >>> >>> >>>Bobby, >>> >>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Dear , first let me express my condolences for the loss of your father. " Patients with ESLD (end stage liver disease aka cirrhosis or stage 4 fibrosis of the liver on biopsy) who experiences their first major complication such as ascites, encephalopathy, variceal bleeding, liver failure, etc. should be evaluated for liver transplatation... " exerpt from " Hepatology- Practical guidelines: Evaluation of the patient for liver transplantation. " , a publication of the American association for the study of liver diseases.  The standard of care dictates that any person who is in need of a liver transplant get one. This does not always happen. Regions differ in how many organs per week come available. If you live in California your time to transplant is faster than if you live in Kansas. You need a higher MELD score in California though. Circumstances vary as well. A ragamuffin off the street will not get a transplant unless there is someone there to make a stink. That's just the way it is. Miracle Aimee is a lady who's husband joined this group briefly in 2007. Aimee was found to be in early stages of liver failure in the fall of 2007. Her and her family lived in Pearl Harbor, her husband serving in the US Air force. As her condition worsened, she was airlifted in a giant hospital plane to Lackland Air force base, San Texas and placed on priority one standby for a transplant. She had some setbacks which prevented her from getting a liver right away, but after she had gotten past an infection, and they had her oxygen sats up, Aimee received a donor liver on the night of October 19, 2007. I guess it stands to reason that if you are active duty, they are going to be ny on the spot with that fresh liver when time comes. None of us, or our parents, brothers, sisters, and especially children are any different, in terms of fairness. We all deserve that chance. My biggest problem with liver disease care is that doctors seem to be the biggest chickens when it comes to telling us that our loved ones are going to expire soon unless someone can shell out a ton of cash, and the patient has not done anything to " deserve " liver disease. That is another subject for another day. Cirrhosis is such a strange disease. Last week we were talking about family members who poo poo this disease and say things like " oh, uncle hector lived for 20 years with cirrhosis. " My own father was guilty of this. I almost strangled him. Uncle never de-compensated!! People with de-compensated end stage liver disease have a 50/50 two year prognosis. Those are terrible stakes. I do not know why it is not more urgent to get folks evaluated for a transplant. On paper , it is, in reality, that is another story. Some people will howl at this, but I believe in an " opt out " donor rule rather than an " opt in " rule. This means they are going to harvest your organs unless you opt out while you are alive, or your family appeals on religious grounds. There would be no shortage of organs then, and we might not be having this conversation. Age does not seem to be that big a factor in getting a transplant green light as much as I thought it might. Even if the patient is eventually deemed to not be a good candidate, I believe people should be given a chance to be evaluated at the very least. In closing, to answer your question, (how long does it normally take for the transplant panel to get your request and review it?) No time at all, really. While you lie in ICU, the wheels can be set in motion, but only in a large, major hospital like a university teaching/transplant hospital. UC , Loma , Colorado University, Cleveland Clinic, s Hopkins, they are examples of hospitals where you could come in with acute hepatic failure from Tylenol       poisoning, and get an emergency liver transplant, especially children. My hepatologist wrote a paper on a Vietnamese lady who picked and ate poisonous mushrooms. http://journals.lww.com/jcge/Abstract/2002/09000/Liver_Transplantation_in_Mushro\ om_Poisoning.16.aspx She was not in the hospital but a few days, and received an emergency liver transplant. This is not uncommon. It is the reason those with chronic liver disease wait on a list. The Vietnamese lady did not survive. Again, my condolences for your father. Sorry for the rambling. Love, Bobby  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Sunday, January 29, 2012 5:04 AM Subject: Re: I need help please.  Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months.  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Sunday, January 29, 2012 4:38 AM >Subject: Re: I need help please. > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > >Love, and prayers , Bobby > >________________________________ > >To: livercirrhosissupport >Sent: Thursday, January 26, 2012 7:00 PM >Subject: Re: I need help please. > > > > >Bobby, > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012  I don't know if this would help, but we make our own laundry detergent and use vinegar as a fabric softner. My daughter used to have super sensitive skin and this was the only thing that wouldn't break her out. If anyone needs/wants it, I'll be happy to provide my recipe. 10$ worth of materials lasts use about 3 months for laundry, and we use the same stuff, in slightly different portions as dishwasher detergent. Yes, they are that similar.  Sincerely, E. Bassett >________________________________ > >To: livercirrhosissupport >Sent: Monday, January 30, 2012 1:25 AM >Subject: Re: I need help please. > > > >Gloria, I can't use fabric softener of any kind, and most cleaning >products. I had to get rid of my cleaning lady bi weekly because she >insisted on using products with a strong smell to sterilize this >place. I don't care if it is sterile, been living in a very >unsanitary house for years, but can't take the smelly cleaning >products, or aerosols, take my breath away. My allergies really >started full fledged with the birth of my youngest son. He would >shoot out a fountain every time I took off his diaper, so I sprayed >with lysol or other spray product so it didn't smell up the couch. >Eventually had to take the couch out of the house and give it away. I >use All Free and Clear and it seems to work pretty good. My kids >couldn't use baby powder either, broke out in a rash, and it made me >sneeze. They have fumigated ou building twice now in the last two >weeks and it is really making sick, first and then really tired, sleep >most of the time and I can't find my inhaler. /the second time they >supposedly used something different which is supposed to be for people >like me, but still bothered. I belonged to one of those multilevel >marketing companies which sold laundry products which didn't bother >me, and they made the point in their sales presentation that everybody >is allergic to laundry products if you use too much and then start >sweating. Will itch like crazy. But I still had trouble with their >fabric softener because of the scent. Why can't we have a scentless >world? Jan > > >> Jan >> >> My son was born with excemafrom head to toe!! It runs in the family and he was blessed with a bad case. Because I had some cousins that had it bad, I knew that I would be lucky if I could use the so-called 99.9% pure products. I couldn't. >> >> I was fortunate enough to buy a small washer and dryer and hook it up in my apartment. To start with, absolutely no one was every allowed to run a load through and use those Bounce sheets and they had to use my laundry detergent. You don't want to know what those dryer sheets did to the son. When it came to laundry detergent, I finally started buying it from one of the multi-level businesses. Then, he didn't have problems. Absolutely nothing that had a scent to it, was another huge thing to be aware of. Baby powder or baby oil were definitely out!! >> >> He had cradle cap well into his teens, when it was up to him to be careful. His feet - oh his feet... He would wear and probably still does, sneakers all the time. The sweat etc caused him to have big hunks of dried skin between his toes. It was ugly. I was told when he was still a baby, that it was best that he had bare feet around the house. I ran out of disposable diapers at a time and so started using the cloth ones I had. Well, my mother forgot to tell me that 4 out of 5 of us were allergic to rubber pants. I thought that I had permanently disfigured his little private parts. >> >> To this very day, there are only 2 laundry products that I can use and thank heavens they are liquid now. I have not and will not use any dryer sheets. I was shown an absolutely wonderful way of softening my clothes. You take an old cloth of some kind, usually a bit bigger than a washcloth and just pore some cheap fabric softener on it and throw it in the dryer. That method has never bothered either one of us. >> >> I've had to go back on my anti-histamines because of the itchy. I buy a product that is dirt cheap and is the exact same as Chlortriplon. It goes a long way to stopping the itch. >> >> Gloria >> >> >> >> ________________________________ >> >> >> >> >> I don't want to interrupt this thread.  Just reading all the emails >> for the last couple of days has made my eyes tear, and I don't have >> any tears, eyes too dry.  But there is something I want to inform >> everybody about and I don't know how to start a thread. >> >> I have known for quite some time that some of my itching was being >> caused by something other than the cirrhosis.  When I went to MN last >> May for my mother's funeral, I came home to a washer so full of soap >> it took 4 loads of washing nothing, just putting in a cup of vinegar >> in each load to get rid of some of the soap.  The man I was living >> with washed his own clothes and had always used too much soap, had a >> rash on a good part of his body when I met him from all the soap left >> in his clothes.  I got him to cut it down and the rash went away.  But >> he still used too much, so I started running my clothes and the >> household laundry through two whole cycles to make sure the soap got >> out or so I thought.  Well, after moving, getting my own new washer >> and dryer hooked up, using only about 2 T of soap to wash my clothes >> and none sometimes for my towels (This had been recommended by an >> article I read on how to do the laundry, especially with these new >> concentrated detergents) my itching is considerably less.  Last week, >> it was cold here, so I put on a pair of leggings which I hadn't used >> since moving.  I started itching like crazy again.  When I took them >> off, the black leggings had white spots all over them, soap which had >> come out of them when I was wearing them.  When I first mentioned >> seeing this white stuff on my black clothes I was told it was probably >> from the elastic they put in some of our clothes to give them a better >> fit.  In some cases it may be, especially in older clothes, but if you >> wear dark clothes and notice white little spots all over them, and >> especially in areas where they are rubbed a lot, check your washer. >> Run some vinegar through it and make sure you see it after the wash >> cycle starts.  I know some of you probably don't have this problem, >> but the regular itching from the cirrhosis is bad enough, we don't >> need to add to it by having soap in our clothes.  The itching is a >> vicious cycle.  If you itch enough that you bleed, then it forms a >> scab, the scab is full of the toxins which caused the itching in the >> first place, so causes more itching, bigger sore, and on and on. >> Until my washer was hooked up which took about 2 months, I had to go >> to the laundromat.  The owner told me which machines to use, the older >> ones as they use more water and more apt to get the soap out, but they >> were still full of soap.  If you don't have your own washer, do >> anything you can to get one.  Test your clothes by putting them in the >> kitchen sink and swishing them around.  You will probably see soap >> suds.  Hope this helps someone.  Jan >> >> >>> >>> >>> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >>> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >>> >>> SUE >>> >>> >>> To: " livercirrhosissupport " <livercirrhosissupport > >>> Sent: Sunday, January 29, 2012 6:04 AM >>> Subject: Re: I need help please. >>> >>> >>> >>> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, >>> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >>> >>> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >>> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >>> >>> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >>> >>> >>> Sincerely, >>> E. Bassett >>> >>>>________________________________ >>>> >>>>To: " livercirrhosissupport " <livercirrhosissupport > >>>>Sent: Sunday, January 29, 2012 4:38 AM >>>>Subject: Re: I need help please. >>>> >>>> >>>> >>>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>>> >>>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>>> >>>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >>>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>>> >>>>Love, and prayers , Bobby >>>> >>>>________________________________ >>>> >>>>To: livercirrhosissupport >>>>Sent: Thursday, January 26, 2012 7:00 PM >>>>Subject: Re: I need help please. >>>> >>>> >>>> >>>> >>>>Bobby, >>>> >>>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 How much vinegar do you put in the rinse for the softener? My granddaughter has a time breaking out all over with a rash. I thought this might help her. >>> >>> >>> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >>> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >>> >>> SUE >>> >>> >>> To: " livercirrhosissupport " <livercirrhosissupport > >>> Sent: Sunday, January 29, 2012 6:04 AM >>> Subject: Re: I need help please. >>> >>> >>> >>> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, >>> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >>> >>> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >>> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >>> >>> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >>> >>> >>> Sincerely, >>> E. Bassett >>> >>>>________________________________ >>>> >>>>To: " livercirrhosissupport " <livercirrhosissupport > >>>>Sent: Sunday, January 29, 2012 4:38 AM >>>>Subject: Re: I need help please. >>>> >>>> >>>> >>>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>>> >>>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>>> >>>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a transplant >>>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>>> >>>>Love, and prayers , Bobby >>>> >>>>________________________________ >>>> >>>>To: livercirrhosissupport >>>>Sent: Thursday, January 26, 2012 7:00 PM >>>>Subject: Re: I need help please. >>>> >>>> >>>> >>>> >>>>Bobby, >>>> >>>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>>> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Now, being as scientific as I am, I use a Downy ball for measuring and throw it in the wash with my laundry like you would traditional liquid fabric softener. However, for a medium or normal sized load, fill it to slightly above the lowest level on the ball and throw it in the wash. After the washer is done with the load, remove clothing pretty promptly, especially if it is warmer outside. If it sets in the water for a long period of time, you'll smell like a chip (again, it didn't hurt my daughter's skin even with that). It's not going to be like " Whoa! Soft! " or smell like a lavender mountain, but it definitely helps soften the laundry some and doesn't kill her skin or cause further irritation (and it deters static cling too). Ever since my daughter was born..and I became especially vigilant after my dad was diagnosed and I did a bunch of research on household products, and being that my mom has NASH, and I am currently being monitored by my specialist cuz my enzyme levels were high but went down..and the ultrasound showed some funkiness with my liver (GI doctor said pretty much think of it as late fatty liver -I am trying to be good and lose the weight and eat better so I help my liver out), I started making my own cleaning products because I don't want to be exposed to a lot and I don't want my daughter either. I've got a TON of home made products that I could share the makings for. Sorry for the digression! Sincerely, E. Bassett >________________________________ > >To: livercirrhosissupport >Sent: Monday, January 30, 2012 7:51 PM >Subject: Re: I need help please. > > > >How much vinegar do you put in the rinse for the softener? My granddaughter has a time breaking out all over with a rash. I thought this might help her. > > >>>> >>>> >>>> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >>>> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >>>> >>>> SUE >>>> >>>> >>>> To: " livercirrhosissupport " <livercirrhosissupport > >>>> Sent: Sunday, January 29, 2012 6:04 AM >>>> Subject: Re: I need help please. >>>> >>>> >>>> >>>> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% >chance, >>>> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >>>> >>>> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >>>> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >>>> >>>> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >>>> >>>> >>>> Sincerely, >>>> E. Bassett >>>> >>>>>________________________________ >>>>> >>>>>To: " livercirrhosissupport " <livercirrhosissupport > >>>>>Sent: Sunday, January 29, 2012 4:38 AM >>>>>Subject: Re: I need help please. >>>>> >>>>> >>>>> >>>>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>>>> >>>>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>>>> >>>>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a >transplant >>>>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>>>> >>>>>Love, and prayers , Bobby >>>>> >>>>>________________________________ >>>>> >>>>>To: livercirrhosissupport >>>>>Sent: Thursday, January 26, 2012 7:00 PM >>>>>Subject: Re: I need help please. >>>>> >>>>> >>>>> >>>>> >>>>>Bobby, >>>>> >>>>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Hi , I would like to get this recipe if you don't mind. Thanks so much! Roni > > > I don't know if this would help, but we make our own laundry > detergent and use vinegar as a fabric softner. My daughter used to > have super sensitive skin and this was the only thing that wouldn't > break her out. > If anyone needs/wants it, I'll be happy to provide my recipe. 10$ > worth of materials lasts use about 3 months for laundry, and we use > the same stuff, in slightly different portions as dishwasher > detergent. Yes, they are that similar. > > Sincerely, E. Bassett > > >________________________________ > > > >To: livercirrhosissupport > >Sent: Monday, January 30, 2012 1:25 AM > >Subject: Re: I need help please. > > > > > > > >Gloria, I can't use fabric softener of any kind, and most cleaning > >products. I had to get rid of my cleaning lady bi weekly because she > >insisted on using products with a strong smell to sterilize this > >place. I don't care if it is sterile, been living in a very > >unsanitary house for years, but can't take the smelly cleaning > >products, or aerosols, take my breath away. My allergies really > >started full fledged with the birth of my youngest son. He would > >shoot out a fountain every time I took off his diaper, so I sprayed > >with lysol or other spray product so it didn't smell up the couch. > >Eventually had to take the couch out of the house and give it away. I > >use All Free and Clear and it seems to work pretty good. My kids > >couldn't use baby powder either, broke out in a rash, and it made me > >sneeze. They have fumigated ou building twice now in the last two > >weeks and it is really making sick, first and then really tired, > sleep > >most of the time and I can't find my inhaler. /the second time they > >supposedly used something different which is supposed to be for > people > >like me, but still bothered. I belonged to one of those multilevel > >marketing companies which sold laundry products which didn't bother > >me, and they made the point in their sales presentation that > everybody > >is allergic to laundry products if you use too much and then start > >sweating. Will itch like crazy. But I still had trouble with their > >fabric softener because of the scent. Why can't we have a scentless > >world? Jan > > > >On Sun, Jan 29, 2012 at 11:36 PM, Gloria > wrote: > >> Jan > >> > >> My son was born with excemafrom head to toe!! It runs in the > family and he was blessed with a bad case. Because I had some > cousins that had it bad, I knew that I would be lucky if I could use > the so-called 99.9% pure products. I couldn't. > >> > >> I was fortunate enough to buy a small washer and dryer and hook > it up in my apartment. To start with, absolutely no one was every > allowed to run a load through and use those Bounce sheets and they > had to use my laundry detergent. You don't want to know what those > dryer sheets did to the son. When it came to laundry detergent, I > finally started buying it from one of the multi-level businesses. > Then, he didn't have problems. Absolutely nothing that had a scent > to it, was another huge thing to be aware of. Baby powder or baby > oil were definitely out!! > >> > >> He had cradle cap well into his teens, when it was up to him to > be careful. His feet - oh his feet... He would wear and probably > still does, sneakers all the time. The sweat etc caused him to have > big hunks of dried skin between his toes. It was ugly. I was told > when he was still a baby, that it was best that he had bare feet > around the house. I ran out of disposable diapers at a time and so > started using the cloth ones I had. Well, my mother forgot to tell > me that 4 out of 5 of us were allergic to rubber pants. I thought > that I had permanently disfigured his little private parts. > >> > >> To this very day, there are only 2 laundry products that I can > use and thank heavens they are liquid now. I have not and will not > use any dryer sheets. I was shown an absolutely wonderful way of > softening my clothes. You take an old cloth of some kind, usually a > bit bigger than a washcloth and just pore some cheap fabric softener > on it and throw it in the dryer. That method has never bothered > either one of us. > >> > >> I've had to go back on my anti-histamines because of the itchy. > I buy a product that is dirt cheap and is the exact same as > Chlortriplon. It goes a long way to stopping the itch. > >> > >> Gloria > >> > >> > >> > >> ________________________________ > >> > >> > >> > >> > >> I don't want to interrupt this thread. Just reading all the emails > >> for the last couple of days has made my eyes tear, and I don't have > >> any tears, eyes too dry. But there is something I want to inform > >> everybody about and I don't know how to start a thread. > >> > >> I have known for quite some time that some of my itching was being > >> caused by something other than the cirrhosis. When I went to MN > last > >> May for my mother's funeral, I came home to a washer so full of > soap > >> it took 4 loads of washing nothing, just putting in a cup of > vinegar > >> in each load to get rid of some of the soap. The man I was living > >> with washed his own clothes and had always used too much soap, > had a > >> rash on a good part of his body when I met him from all the soap > left > >> in his clothes. I got him to cut it down and the rash went > away. But > >> he still used too much, so I started running my clothes and the > >> household laundry through two whole cycles to make sure the soap > got > >> out or so I thought. Well, after moving, getting my own new washer > >> and dryer hooked up, using only about 2 T of soap to wash my > clothes > >> and none sometimes for my towels (This had been recommended by an > >> article I read on how to do the laundry, especially with these new > >> concentrated detergents) my itching is considerably less. Last > week, > >> it was cold here, so I put on a pair of leggings which I hadn't > used > >> since moving. I started itching like crazy again. When I took > them > >> off, the black leggings had white spots all over them, soap which > had > >> come out of them when I was wearing them. When I first mentioned > >> seeing this white stuff on my black clothes I was told it was > probably > >> from the elastic they put in some of our clothes to give them a > better > >> fit. In some cases it may be, especially in older clothes, but > if you > >> wear dark clothes and notice white little spots all over them, and > >> especially in areas where they are rubbed a lot, check your washer. > >> Run some vinegar through it and make sure you see it after the wash > >> cycle starts. I know some of you probably don't have this problem, > >> but the regular itching from the cirrhosis is bad enough, we don't > >> need to add to it by having soap in our clothes. The itching is a > >> vicious cycle. If you itch enough that you bleed, then it forms a > >> scab, the scab is full of the toxins which caused the itching in > the > >> first place, so causes more itching, bigger sore, and on and on. > >> Until my washer was hooked up which took about 2 months, I had to > go > >> to the laundromat. The owner told me which machines to use, the > older > >> ones as they use more water and more apt to get the soap out, but > they > >> were still full of soap. If you don't have your own washer, do > >> anything you can to get one. Test your clothes by putting them > in the > >> kitchen sink and swishing them around. You will probably see soap > >> suds. Hope this helps someone. Jan > >> > >> On Sun, Jan 29, 2012 at 3:00 PM, sue steffin > wrote: > >>> > >>> > >>> Time of diagnosis until time of passing varies on each > individual. The kind of liver damage and the diagnosis time frame > only a couple of many, many factors Drs. have to consider for > transplantation. There are limited numbers of doners and a patient > has to be able to endure the surgery. > >>> I my case- diagnosed in 2001, treatment that did not work 2002, > cancer developed 3 times ( liver cancer surgery, raydiation > therapies, etc. from then until I was listed in 2010. Gift of life > given April 2010 but body attacking new liver and rejecting. Had > shut put in for the ascites, lactalose for amonias for > encephalothopy. This is an ugly disease for the patient and the > caregivers. It truly in Gods hands now for me as it sounds like it > was for your father. I will pray for your family. > >>> > >>> SUE > >>> > >>> > >>> To: " livercirrhosissupport " <livercirrhosissupport > > > >>> Sent: Sunday, January 29, 2012 6:04 AM > >>> Subject: Re: I need help please. > >>> > >>> > >>> > >>> Whenever my father was diagnosed with ESLD, it took almost a 2 > months for my father to get rejected for a transplant. By the time > he was rejected from the first group, his condition was waning (a > few bad bouts of encephalopathy, skyrocketing ammonia, > uncontrollably high blood sugar, the ascities filling quicker which > needed more draining, more yellowing, more issues with taking in/ > holding in food, and more). We had been looking at going to Mayo > for about 3 wks and this made him go (going to Rochester, MN from > Tulsa). His original specialist and the one who broke the news said > he would advise us to do whatever we thought needed to do. I could > read his face like a book, and I know he felt bad telling my Dad and > Mom, since all the grandkids and my brother and myself were within > an earshot. Inconvenient or not, all of my family sticks together > even if it is in a hospital room the size of a small closet. I > asked even if there was a 1% chance, > >>> should we follow it - the doctor looked like he wanted us to > keep up hope but the prognosis was grim. He said one percent was > better then none - do what we needed to do and quick. > >>> > >>> A friend's boss offered to fly my dad to Mayo two days later and > an appointment was set. Dad went through 2 days of testing and > doctor's, and was told the opinion of his Mayo hepatologist that he > wouldn't advise the transplant, that day should go home and be > comfortable and not worry about his blood sugar, ammonia, sodium, > etc... I appreciate their efforts and for not wasting my dad's time. > The very next day, Dad came home. About 5 days after they got back, > my dad slipped into a coma and hospice was called in. I spent the > entire time that night, minus about 1.5 hours whenever my mom > relieved me, talking to him, turning the tv to law and order or csi > or ncis, reading his facebook to him, reading bible verses to him, > going through photo albums telling him what photos i was looking at, > anything to let him know someone was there - i wasn't sure if he was > there or not but if i were and i was coming in and out, i'd be > freaked out if i thought i was > >>> alone. during this time, too, whenever i'd be talking to him > about our family or my daughter who was just a year old, his eyes > would start watering like he was tearing up. i don't know if that > was him, but i sure hope he heard some of what i said. About 24 > hours after slipping into the coma, he passed with us at his side. > >>> > >>> i digress majorly...but how long does it normally take for the > transplant panel to get your request and review it? i cannot > remember why it took that long for my dad or maybe none of us > thought to ask in my family. from time or diagnosis to time of > death for my dad was just under 2.5 months. > >>> > >>> > >>> Sincerely, > >>> E. Bassett > >>> > >>>>________________________________ > >>>> > >>>>To: " livercirrhosissupport " <livercirrhosissupport > > > >>>>Sent: Sunday, January 29, 2012 4:38 AM > >>>>Subject: Re: I need help please. > >>>> > >>>> > >>>> > >>>>The shrunken liver makes sense to me. For most of us, our > liver's capsule hides the cirrhosis very well. Mine does. > >>>> > >>>>Is he at a transplant center? Are these doctors liver doctors? I > have just never heard of liver doctors " cross their fingers " that a > mans' liver will start " compensating " again , at least not in front > of the family. > >>>> > >>>>Hepatologists (liver doctors) are usually very scientific, and > have no sense of humor, and do not use slang, or at least rarely > do. . I hope that some one there can do a liver transplant. At some > point you might want to ask them point blank. If the patient is at a > hospital which does liver transplants, they will evaluate for > transplant for anyone who is not activly an alcoholic, or drug > addict, and has end stage liver disease, (stage 4 fibrosis) who has > experienced the first major complication, such as encephalopathy, > ascites, and certainly liver failure. Severe obesity and other major > health conditions might also affect the decision. A person in liver > failure will be placed in a priority position for an organ in their > region, which is why everyone waiting on the list have to wait. The > last word is up to the transplant surgeon, and no one below him, and > EVERYONE else is below him, except God. You might want to first find > o0ut if he is in a > transplant > >>>>hospital, and then if he is, ask the " question " . If he is not, > you might want to ask if he can be transferred to one if he is a > possible candidate. Have they even told you that a liver transplant > is the only treatment for this condition ? > >>>> > >>>>Love, and prayers , Bobby > >>>> > >>>>________________________________ > >>>> > >>>>To: livercirrhosissupport > >>>>Sent: Thursday, January 26, 2012 7:00 PM > >>>>Subject: Re: I need help please. > >>>> > >>>> > >>>> > >>>> > >>>>Bobby, > >>>> > >>>>They haven't mentioned anything about a liver transplant. Just > said they are crossing their fingers that his liver will start > 'compensating' again. He's having some pretty significant confusion > and lethargy. > >>>>He's been in the hospital for over 3 weeks now. They say his > kidneys aren't doing that hot, his ammonia is still elevated, and > all that kind of stuff. > >>>>He's on a pill to keep his blood pressure elevated, a pill to > keep his heart rate down in a normal range, they just took him off > the oxygen finally, they have him on lactulose 4 times a day, and > 80mg of Lasix twice a day. > >>>>He is also a diabetic, and is getting over pneumonia. They > haven't been able to give me much information about anything really. > Other than he is in Stage 4 liver failure with no need to biopsy > because they can see the cirrhosis on the catscan they did. They > said his liver is shrunken from the cirrhosis. > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Thanks for the idea. We are going to try it and see if it helps her. I do think all the chemicals in cleaning supplies, etc aren't good for a person to use. When I was young we only had about 4 basic things in the medicine cabinet and that seemed to cure all. The iodine for a cut or scrape, vicks vapor rub for colds , vaseline , and caster oil!!! Look now whats all on the market for every little thing. I have started to take the Braggs Apple Cider Raw Unfiltered Organic Vinegar as someone told me all the benefits it has for a person's body. It can't be the distilled kind as that takes all the good things out of it. I feel better I think. Not sure if it's that or in my mind. Just started to take it. >>>> >>>> >>>> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >>>> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >>>> >>>> SUE >>>> >>>> >>>> To: " livercirrhosissupport " <livercirrhosissupport > >>>> Sent: Sunday, January 29, 2012 6:04 AM >>>> Subject: Re: I need help please. >>>> >>>> >>>> >>>> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% >chance, >>>> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >>>> >>>> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >>>> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >>>> >>>> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >>>> >>>> >>>> Sincerely, >>>> E. Bassett >>>> >>>>>________________________________ >>>>> >>>>>To: " livercirrhosissupport " <livercirrhosissupport > >>>>>Sent: Sunday, January 29, 2012 4:38 AM >>>>>Subject: Re: I need help please. >>>>> >>>>> >>>>> >>>>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>>>> >>>>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>>>> >>>>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a >transplant >>>>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>>>> >>>>>Love, and prayers , Bobby >>>>> >>>>>________________________________ >>>>> >>>>>To: livercirrhosissupport >>>>>Sent: Thursday, January 26, 2012 7:00 PM >>>>>Subject: Re: I need help please. >>>>> >>>>> >>>>> >>>>> >>>>>Bobby, >>>>> >>>>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>>>> >>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Hello , I also would like the recipes. Thank you so much! Lyncia To: livercirrhosissupport Sent: Monday, January 30, 2012 8:36 PM Subject: Re: I need help please. Hi , I would like to get this recipe if you don't mind. Thanks so much! Roni > > > I don't know if this would help, but we make our own laundry > detergent and use vinegar as a fabric softner. My daughter used to > have super sensitive skin and this was the only thing that wouldn't > break her out. > If anyone needs/wants it, I'll be happy to provide my recipe. 10$ > worth of materials lasts use about 3 months for laundry, and we use > the same stuff, in slightly different portions as dishwasher > detergent. Yes, they are that similar. > > Sincerely, E. Bassett > > >________________________________ > > > >To: livercirrhosissupport > >Sent: Monday, January 30, 2012 1:25 AM > >Subject: Re: I need help please. > > > > > > > >Gloria, I can't use fabric softener of any kind, and most cleaning > >products. I had to get rid of my cleaning lady bi weekly because she > >insisted on using products with a strong smell to sterilize this > >place. I don't care if it is sterile, been living in a very > >unsanitary house for years, but can't take the smelly cleaning > >products, or aerosols, take my breath away. My allergies really > >started full fledged with the birth of my youngest son. He would > >shoot out a fountain every time I took off his diaper, so I sprayed > >with lysol or other spray product so it didn't smell up the couch. > >Eventually had to take the couch out of the house and give it away. I > >use All Free and Clear and it seems to work pretty good. My kids > >couldn't use baby powder either, broke out in a rash, and it made me > >sneeze. They have fumigated ou building twice now in the last two > >weeks and it is really making sick, first and then really tired, > sleep > >most of the time and I can't find my inhaler. /the second time they > >supposedly used something different which is supposed to be for > people > >like me, but still bothered. I belonged to one of those multilevel > >marketing companies which sold laundry products which didn't bother > >me, and they made the point in their sales presentation that > everybody > >is allergic to laundry products if you use too much and then start > >sweating. Will itch like crazy. But I still had trouble with their > >fabric softener because of the scent. Why can't we have a scentless > >world? Jan > > > >On Sun, Jan 29, 2012 at 11:36 PM, Gloria > wrote: > >> Jan > >> > >> My son was born with excemafrom head to toe!! It runs in the > family and he was blessed with a bad case. Because I had some > cousins that had it bad, I knew that I would be lucky if I could use > the so-called 99.9% pure products. I couldn't. > >> > >> I was fortunate enough to buy a small washer and dryer and hook > it up in my apartment. To start with, absolutely no one was every > allowed to run a load through and use those Bounce sheets and they > had to use my laundry detergent. You don't want to know what those > dryer sheets did to the son. When it came to laundry detergent, I > finally started buying it from one of the multi-level businesses. > Then, he didn't have problems. Absolutely nothing that had a scent > to it, was another huge thing to be aware of. Baby powder or baby > oil were definitely out!! > >> > >> He had cradle cap well into his teens, when it was up to him to > be careful. His feet - oh his feet... He would wear and probably > still does, sneakers all the time. The sweat etc caused him to have > big hunks of dried skin between his toes. It was ugly. I was told > when he was still a baby, that it was best that he had bare feet > around the house. I ran out of disposable diapers at a time and so > started using the cloth ones I had. Well, my mother forgot to tell > me that 4 out of 5 of us were allergic to rubber pants. I thought > that I had permanently disfigured his little private parts. > >> > >> To this very day, there are only 2 laundry products that I can > use and thank heavens they are liquid now. I have not and will not > use any dryer sheets. I was shown an absolutely wonderful way of > softening my clothes. You take an old cloth of some kind, usually a > bit bigger than a washcloth and just pore some cheap fabric softener > on it and throw it in the dryer. That method has never bothered > either one of us. > >> > >> I've had to go back on my anti-histamines because of the itchy. > I buy a product that is dirt cheap and is the exact same as > Chlortriplon. It goes a long way to stopping the itch. > >> > >> Gloria > >> > >> > >> > >> ________________________________ > >> > >> > >> > >> > >> I don't want to interrupt this thread. Just reading all the emails > >> for the last couple of days has made my eyes tear, and I don't have > >> any tears, eyes too dry. But there is something I want to inform > >> everybody about and I don't know how to start a thread. > >> > >> I have known for quite some time that some of my itching was being > >> caused by something other than the cirrhosis. When I went to MN > last > >> May for my mother's funeral, I came home to a washer so full of > soap > >> it took 4 loads of washing nothing, just putting in a cup of > vinegar > >> in each load to get rid of some of the soap. The man I was living > >> with washed his own clothes and had always used too much soap, > had a > >> rash on a good part of his body when I met him from all the soap > left > >> in his clothes. I got him to cut it down and the rash went > away. But > >> he still used too much, so I started running my clothes and the > >> household laundry through two whole cycles to make sure the soap > got > >> out or so I thought. Well, after moving, getting my own new washer > >> and dryer hooked up, using only about 2 T of soap to wash my > clothes > >> and none sometimes for my towels (This had been recommended by an > >> article I read on how to do the laundry, especially with these new > >> concentrated detergents) my itching is considerably less. Last > week, > >> it was cold here, so I put on a pair of leggings which I hadn't > used > >> since moving. I started itching like crazy again. When I took > them > >> off, the black leggings had white spots all over them, soap which > had > >> come out of them when I was wearing them. When I first mentioned > >> seeing this white stuff on my black clothes I was told it was > probably > >> from the elastic they put in some of our clothes to give them a > better > >> fit. In some cases it may be, especially in older clothes, but > if you > >> wear dark clothes and notice white little spots all over them, and > >> especially in areas where they are rubbed a lot, check your washer. > >> Run some vinegar through it and make sure you see it after the wash > >> cycle starts. I know some of you probably don't have this problem, > >> but the regular itching from the cirrhosis is bad enough, we don't > >> need to add to it by having soap in our clothes. The itching is a > >> vicious cycle. If you itch enough that you bleed, then it forms a > >> scab, the scab is full of the toxins which caused the itching in > the > >> first place, so causes more itching, bigger sore, and on and on. > >> Until my washer was hooked up which took about 2 months, I had to > go > >> to the laundromat. The owner told me which machines to use, the > older > >> ones as they use more water and more apt to get the soap out, but > they > >> were still full of soap. If you don't have your own washer, do > >> anything you can to get one. Test your clothes by putting them > in the > >> kitchen sink and swishing them around. You will probably see soap > >> suds. Hope this helps someone. Jan > >> > >> On Sun, Jan 29, 2012 at 3:00 PM, sue steffin > wrote: > >>> > >>> > >>> Time of diagnosis until time of passing varies on each > individual. The kind of liver damage and the diagnosis time frame > only a couple of many, many factors Drs. have to consider for > transplantation. There are limited numbers of doners and a patient > has to be able to endure the surgery. > >>> I my case- diagnosed in 2001, treatment that did not work 2002, > cancer developed 3 times ( liver cancer surgery, raydiation > therapies, etc. from then until I was listed in 2010. Gift of life > given April 2010 but body attacking new liver and rejecting. Had > shut put in for the ascites, lactalose for amonias for > encephalothopy. This is an ugly disease for the patient and the > caregivers. It truly in Gods hands now for me as it sounds like it > was for your father. I will pray for your family. > >>> > >>> SUE > >>> > >>> > >>> To: " livercirrhosissupport " <livercirrhosissupport > > > >>> Sent: Sunday, January 29, 2012 6:04 AM > >>> Subject: Re: I need help please. > >>> > >>> > >>> > >>> Whenever my father was diagnosed with ESLD, it took almost a 2 > months for my father to get rejected for a transplant. By the time > he was rejected from the first group, his condition was waning (a > few bad bouts of encephalopathy, skyrocketing ammonia, > uncontrollably high blood sugar, the ascities filling quicker which > needed more draining, more yellowing, more issues with taking in/ > holding in food, and more). We had been looking at going to Mayo > for about 3 wks and this made him go (going to Rochester, MN from > Tulsa). His original specialist and the one who broke the news said > he would advise us to do whatever we thought needed to do. I could > read his face like a book, and I know he felt bad telling my Dad and > Mom, since all the grandkids and my brother and myself were within > an earshot. Inconvenient or not, all of my family sticks together > even if it is in a hospital room the size of a small closet. I > asked even if there was a 1% chance, > >>> should we follow it - the doctor looked like he wanted us to > keep up hope but the prognosis was grim. He said one percent was > better then none - do what we needed to do and quick. > >>> > >>> A friend's boss offered to fly my dad to Mayo two days later and > an appointment was set. Dad went through 2 days of testing and > doctor's, and was told the opinion of his Mayo hepatologist that he > wouldn't advise the transplant, that day should go home and be > comfortable and not worry about his blood sugar, ammonia, sodium, > etc... I appreciate their efforts and for not wasting my dad's time. > The very next day, Dad came home. About 5 days after they got back, > my dad slipped into a coma and hospice was called in. I spent the > entire time that night, minus about 1.5 hours whenever my mom > relieved me, talking to him, turning the tv to law and order or csi > or ncis, reading his facebook to him, reading bible verses to him, > going through photo albums telling him what photos i was looking at, > anything to let him know someone was there - i wasn't sure if he was > there or not but if i were and i was coming in and out, i'd be > freaked out if i thought i was > >>> alone. during this time, too, whenever i'd be talking to him > about our family or my daughter who was just a year old, his eyes > would start watering like he was tearing up. i don't know if that > was him, but i sure hope he heard some of what i said. About 24 > hours after slipping into the coma, he passed with us at his side. > >>> > >>> i digress majorly...but how long does it normally take for the > transplant panel to get your request and review it? i cannot > remember why it took that long for my dad or maybe none of us > thought to ask in my family. from time or diagnosis to time of > death for my dad was just under 2.5 months. > >>> > >>> > >>> Sincerely, > >>> E. Bassett > >>> > >>>>________________________________ > >>>> > >>>>To: " livercirrhosissupport " <livercirrhosissupport > > > >>>>Sent: Sunday, January 29, 2012 4:38 AM > >>>>Subject: Re: I need help please. > >>>> > >>>> > >>>> > >>>>The shrunken liver makes sense to me. For most of us, our > liver's capsule hides the cirrhosis very well. Mine does. > >>>> > >>>>Is he at a transplant center? Are these doctors liver doctors? I > have just never heard of liver doctors " cross their fingers " that a > mans' liver will start " compensating " again , at least not in front > of the family. > >>>> > >>>>Hepatologists (liver doctors) are usually very scientific, and > have no sense of humor, and do not use slang, or at least rarely > do. . I hope that some one there can do a liver transplant. At some > point you might want to ask them point blank. If the patient is at a > hospital which does liver transplants, they will evaluate for > transplant for anyone who is not activly an alcoholic, or drug > addict, and has end stage liver disease, (stage 4 fibrosis) who has > experienced the first major complication, such as encephalopathy, > ascites, and certainly liver failure. Severe obesity and other major > health conditions might also affect the decision. A person in liver > failure will be placed in a priority position for an organ in their > region, which is why everyone waiting on the list have to wait. The > last word is up to the transplant surgeon, and no one below him, and > EVERYONE else is below him, except God. You might want to first find > o0ut if he is in a > transplant > >>>>hospital, and then if he is, ask the " question " . If he is not, > you might want to ask if he can be transferred to one if he is a > possible candidate. Have they even told you that a liver transplant > is the only treatment for this condition ? > >>>> > >>>>Love, and prayers , Bobby > >>>> > >>>>________________________________ > >>>> > >>>>To: livercirrhosissupport > >>>>Sent: Thursday, January 26, 2012 7:00 PM > >>>>Subject: Re: I need help please. > >>>> > >>>> > >>>> > >>>> > >>>>Bobby, > >>>> > >>>>They haven't mentioned anything about a liver transplant. Just > said they are crossing their fingers that his liver will start > 'compensating' again. He's having some pretty significant confusion > and lethargy. > >>>>He's been in the hospital for over 3 weeks now. They say his > kidneys aren't doing that hot, his ammonia is still elevated, and > all that kind of stuff. > >>>>He's on a pill to keep his blood pressure elevated, a pill to > keep his heart rate down in a normal range, they just took him off > the oxygen finally, they have him on lactulose 4 times a day, and > 80mg of Lasix twice a day. > >>>>He is also a diabetic, and is getting over pneumonia. They > haven't been able to give me much information about anything really. > Other than he is in Stage 4 liver failure with no need to biopsy > because they can see the cirrhosis on the catscan they did. They > said his liver is shrunken from the cirrhosis. > >>>> > >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Heya! I just posted another thread with it in there!  Sincerely, E. Bassett >________________________________ > >To: " livercirrhosissupport " <livercirrhosissupport > >Sent: Monday, January 30, 2012 9:13 PM >Subject: Re: I need help please. > > > >Hello , > >I also would like the recipes.  Thank you so much! > >Lyncia > > >To: livercirrhosissupport >Sent: Monday, January 30, 2012 8:36 PM >Subject: Re: I need help please. > >Hi , > >I would like to get this recipe if you don't mind. > >Thanks so much! >Roni > > > >> >> >> I don't know if this would help, but we make our own laundry >> detergent and use vinegar as a fabric softner. My daughter used to >> have super sensitive skin and this was the only thing that wouldn't >> break her out. >> If anyone needs/wants it, I'll be happy to provide my recipe. 10$ >> worth of materials lasts use about 3 months for laundry, and we use >> the same stuff, in slightly different portions as dishwasher >> detergent. Yes, they are that similar. >> >> Sincerely, E. Bassett >> >> >________________________________ >> > >> >To: livercirrhosissupport >> >Sent: Monday, January 30, 2012 1:25 AM >> >Subject: Re: I need help please. >> > >> > >> > >> >Gloria, I can't use fabric softener of any kind, and most cleaning >> >products. I had to get rid of my cleaning lady bi weekly because she >> >insisted on using products with a strong smell to sterilize this >> >place. I don't care if it is sterile, been living in a very >> >unsanitary house for years, but can't take the smelly cleaning >> >products, or aerosols, take my breath away. My allergies really >> >started full fledged with the birth of my youngest son. He would >> >shoot out a fountain every time I took off his diaper, so I sprayed >> >with lysol or other spray product so it didn't smell up the couch. >> >Eventually had to take the couch out of the house and give it away. I >> >use All Free and Clear and it seems to work pretty good. My kids >> >couldn't use baby powder either, broke out in a rash, and it made me >> >sneeze. They have fumigated ou building twice now in the last two >> >weeks and it is really making sick, first and then really tired, >> sleep >> >most of the time and I can't find my inhaler. /the second time they >> >supposedly used something different which is supposed to be for >> people >> >like me, but still bothered. I belonged to one of those multilevel >> >marketing companies which sold laundry products which didn't bother >> >me, and they made the point in their sales presentation that >> everybody >> >is allergic to laundry products if you use too much and then start >> >sweating. Will itch like crazy. But I still had trouble with their >> >fabric softener because of the scent. Why can't we have a scentless >> >world? Jan >> > >> >On Sun, Jan 29, 2012 at 11:36 PM, Gloria  >> wrote: >> >> Jan >> >> >> >> My son was born with excemafrom head to toe!! It runs in the >> family and he was blessed with a bad case. Because I had some >> cousins that had it bad, I knew that I would be lucky if I could use >> the so-called 99.9% pure products. I couldn't. >> >> >> >> I was fortunate enough to buy a small washer and dryer and hook >> it up in my apartment. To start with, absolutely no one was every >> allowed to run a load through and use those Bounce sheets and they >> had to use my laundry detergent. You don't want to know what those >> dryer sheets did to the son. When it came to laundry detergent, I >> finally started buying it from one of the multi-level businesses. >> Then, he didn't have problems. Absolutely nothing that had a scent >> to it, was another huge thing to be aware of. Baby powder or baby >> oil were definitely out!! >> >> >> >> He had cradle cap well into his teens, when it was up to him to >> be careful. His feet - oh his feet... He would wear and probably >> still does, sneakers all the time. The sweat etc caused him to have >> big hunks of dried skin between his toes. It was ugly. I was told >> when he was still a baby, that it was best that he had bare feet >> around the house. I ran out of disposable diapers at a time and so >> started using the cloth ones I had. Well, my mother forgot to tell >> me that 4 out of 5 of us were allergic to rubber pants. I thought >> that I had permanently disfigured his little private parts. >> >> >> >> To this very day, there are only 2 laundry products that I can >> use and thank heavens they are liquid now. I have not and will not >> use any dryer sheets. I was shown an absolutely wonderful way of >> softening my clothes. You take an old cloth of some kind, usually a >> bit bigger than a washcloth and just pore some cheap fabric softener >> on it and throw it in the dryer. That method has never bothered >> either one of us. >> >> >> >> I've had to go back on my anti-histamines because of the itchy. >> I buy a product that is dirt cheap and is the exact same as >> Chlortriplon. It goes a long way to stopping the itch. >> >> >> >> Gloria >> >> >> >> >> >> >> >> ________________________________ >> >> >> >> >> >> >> >> >> >> I don't want to interrupt this thread. Just reading all the emails >> >> for the last couple of days has made my eyes tear, and I don't have >> >> any tears, eyes too dry. But there is something I want to inform >> >> everybody about and I don't know how to start a thread. >> >> >> >> I have known for quite some time that some of my itching was being >> >> caused by something other than the cirrhosis. When I went to MN >> last >> >> May for my mother's funeral, I came home to a washer so full of >> soap >> >> it took 4 loads of washing nothing, just putting in a cup of >> vinegar >> >> in each load to get rid of some of the soap. The man I was living >> >> with washed his own clothes and had always used too much soap, >> had a >> >> rash on a good part of his body when I met him from all the soap >> left >> >> in his clothes. I got him to cut it down and the rash went >> away. But >> >> he still used too much, so I started running my clothes and the >> >> household laundry through two whole cycles to make sure the soap >> got >> >> out or so I thought. Well, after moving, getting my own new washer >> >> and dryer hooked up, using only about 2 T of soap to wash my >> clothes >> >> and none sometimes for my towels (This had been recommended by an >> >> article I read on how to do the laundry, especially with these new >> >> concentrated detergents) my itching is considerably less. Last >> week, >> >> it was cold here, so I put on a pair of leggings which I hadn't >> used >> >> since moving. I started itching like crazy again. When I took >> them >> >> off, the black leggings had white spots all over them, soap which >> had >> >> come out of them when I was wearing them. When I first mentioned >> >> seeing this white stuff on my black clothes I was told it was >> probably >> >> from the elastic they put in some of our clothes to give them a >> better >> >> fit. In some cases it may be, especially in older clothes, but >> if you >> >> wear dark clothes and notice white little spots all over them, and >> >> especially in areas where they are rubbed a lot, check your washer. >> >> Run some vinegar through it and make sure you see it after the wash >> >> cycle starts. I know some of you probably don't have this problem, >> >> but the regular itching from the cirrhosis is bad enough, we don't >> >> need to add to it by having soap in our clothes. The itching is a >> >> vicious cycle. If you itch enough that you bleed, then it forms a >> >> scab, the scab is full of the toxins which caused the itching in >> the >> >> first place, so causes more itching, bigger sore, and on and on. >> >> Until my washer was hooked up which took about 2 months, I had to >> go >> >> to the laundromat. The owner told me which machines to use, the >> older >> >> ones as they use more water and more apt to get the soap out, but >> they >> >> were still full of soap. If you don't have your own washer, do >> >> anything you can to get one. Test your clothes by putting them >> in the >> >> kitchen sink and swishing them around. You will probably see soap >> >> suds. Hope this helps someone. Jan >> >> >> >> On Sun, Jan 29, 2012 at 3:00 PM, sue steffin >> wrote: >> >>> >> >>> >> >>> Time of diagnosis until time of passing varies on each >> individual. The kind of liver damage and the diagnosis time frame >> only a couple of many, many factors Drs. have to consider for >> transplantation. There are limited numbers of doners and a patient >> has to be able to endure the surgery. >> >>> I my case- diagnosed in 2001, treatment that did not work 2002, >> cancer developed 3 times ( liver cancer surgery, raydiation >> therapies, etc. from then until I was listed in 2010. Gift of life >> given April 2010 but body attacking new liver and rejecting. Had >> shut put in for the ascites, lactalose for amonias for >> encephalothopy. This is an ugly disease for the patient and the >> caregivers. It truly in Gods hands now for me as it sounds like it >> was for your father. I will pray for your family. >> >>> >> >>> SUE >> >>> >> >>> >> >>> To: " livercirrhosissupport " <livercirrhosissupport >> > >> >>> Sent: Sunday, January 29, 2012 6:04 AM >> >>> Subject: Re: I need help please. >> >>> >> >>> >> >>> >> >>> Whenever my father was diagnosed with ESLD, it took almost a 2 >> months for my father to get rejected for a transplant. By the time >> he was rejected from the first group, his condition was waning (a >> few bad bouts of encephalopathy, skyrocketing ammonia, >> uncontrollably high blood sugar, the ascities filling quicker which >> needed more draining, more yellowing, more issues with taking in/ >> holding in food, and more). We had been looking at going to Mayo >> for about 3 wks and this made him go (going to Rochester, MN from >> Tulsa). His original specialist and the one who broke the news said >> he would advise us to do whatever we thought needed to do. I could >> read his face like a book, and I know he felt bad telling my Dad and >> Mom, since all the grandkids and my brother and myself were within >> an earshot. Inconvenient or not, all of my family sticks together >> even if it is in a hospital room the size of a small closet. I >> asked even if there was a 1% chance, >> >>> should we follow it - the doctor looked like he wanted us to >> keep up hope but the prognosis was grim. He said one percent was >> better then none - do what we needed to do and quick. >> >>> >> >>> A friend's boss offered to fly my dad to Mayo two days later and >> an appointment was set. Dad went through 2 days of testing and >> doctor's, and was told the opinion of his Mayo hepatologist that he >> wouldn't advise the transplant, that day should go home and be >> comfortable and not worry about his blood sugar, ammonia, sodium, >> etc... I appreciate their efforts and for not wasting my dad's time. >> The very next day, Dad came home. About 5 days after they got back, >> my dad slipped into a coma and hospice was called in. I spent the >> entire time that night, minus about 1.5 hours whenever my mom >> relieved me, talking to him, turning the tv to law and order or csi >> or ncis, reading his facebook to him, reading bible verses to him, >> going through photo albums telling him what photos i was looking at, >> anything to let him know someone was there - i wasn't sure if he was >> there or not but if i were and i was coming in and out, i'd be >> freaked out if i thought i was >> >>> alone. during this time, too, whenever i'd be talking to him >> about our family or my daughter who was just a year old, his eyes >> would start watering like he was tearing up. i don't know if that >> was him, but i sure hope he heard some of what i said. About 24 >> hours after slipping into the coma, he passed with us at his side. >> >>> >> >>> i digress majorly...but how long does it normally take for the >> transplant panel to get your request and review it? i cannot >> remember why it took that long for my dad or maybe none of us >> thought to ask in my family. from time or diagnosis to time of >> death for my dad was just under 2.5 months. >> >>> >> >>> >> >>> Sincerely, >> >>> E. Bassett >> >>> >> >>>>________________________________ >> >>>> >> >>>>To: " livercirrhosissupport " <livercirrhosissupport >> > >> >>>>Sent: Sunday, January 29, 2012 4:38 AM >> >>>>Subject: Re: I need help please. >> >>>> >> >>>> >> >>>> >> >>>>The shrunken liver makes sense to me. For most of us, our >> liver's capsule hides the cirrhosis very well. Mine does. >> >>>> >> >>>>Is he at a transplant center? Are these doctors liver doctors? I >> have just never heard of liver doctors " cross their fingers " that a >> mans' liver will start " compensating " again , at least not in front >> of the family. >> >>>> >> >>>>Hepatologists (liver doctors) are usually very scientific, and >> have no sense of humor, and do not use slang, or at least rarely >> do. . I hope that some one there can do a liver transplant. At some >> point you might want to ask them point blank. If the patient is at a >> hospital which does liver transplants, they will evaluate for >> transplant for anyone who is not activly an alcoholic, or drug >> addict, and has end stage liver disease, (stage 4 fibrosis) who has >> experienced the first major complication, such as encephalopathy, >> ascites, and certainly liver failure. Severe obesity and other major >> health conditions might also affect the decision. A person in liver >> failure will be placed in a priority position for an organ in their >> region, which is why everyone waiting on the list have to wait. The >> last word is up to the transplant surgeon, and no one below him, and >> EVERYONE else is below him, except God. You might want to first find >> o0ut if he is in a >> transplant >> >>>>hospital, and then if he is, ask the " question " . If he is not, >> you might want to ask if he can be transferred to one if he is a >> possible candidate. Have they even told you that a liver transplant >> is the only treatment for this condition ? >> >>>> >> >>>>Love, and prayers , Bobby >> >>>> >> >>>>________________________________ >> >>>> >> >>>>To: livercirrhosissupport >> >>>>Sent: Thursday, January 26, 2012 7:00 PM >> >>>>Subject: Re: I need help please. >> >>>> >> >>>> >> >>>> >> >>>> >> >>>>Bobby, >> >>>> >> >>>>They haven't mentioned anything about a liver transplant. Just >> said they are crossing their fingers that his liver will start >> 'compensating' again. He's having some pretty significant confusion >> and lethargy. >> >>>>He's been in the hospital for over 3 weeks now. They say his >> kidneys aren't doing that hot, his ammonia is still elevated, and >> all that kind of stuff. >> >>>>He's on a pill to keep his blood pressure elevated, a pill to >> keep his heart rate down in a normal range, they just took him off >> the oxygen finally, they have him on lactulose 4 times a day, and >> 80mg of Lasix twice a day. >> >>>>He is also a diabetic, and is getting over pneumonia. They >> haven't been able to give me much information about anything really. >> Other than he is in Stage 4 liver failure with no need to biopsy >> because they can see the cirrhosis on the catscan they did. They >> said his liver is shrunken from the cirrhosis. >> >>>> >> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 I started reading up on plastics...and how they break down..and all the cleaning products containing this or that..and what is thought to be absorbed through the skin, and it just totally freaks me out. We use tea tree oil, vinegar, and lemon oil for a lot of our sanitizing items. Baking Soda instead of Carpet fresh. We clean our garbage disposal with orange/lemon peels, ice, and baking soda. We also use a lot of homeopathic items and have like lavender oil (for antiseptic), red clover oil (for pimples, small infections, and inflammations) and arnica (for burns and chaps) around the house. I am a little bit of a hippy.. I put my recipe for the detergent on another post to keep from further jacking this one!  Sincerely, E. Bassett >________________________________ > >To: livercirrhosissupport >Sent: Monday, January 30, 2012 8:52 PM >Subject: Re: I need help please. > > > >Thanks for the idea. We are going to try it and see if it helps her. I do think all the chemicals in cleaning supplies, etc aren't good for a person to use. When I was young we only had about 4 basic things in the medicine cabinet and that seemed to cure all. The iodine for a cut or scrape, vicks vapor rub for colds , vaseline , and caster oil!!! Look now whats all on the market for every little thing. I have started to take the Braggs Apple Cider Raw Unfiltered Organic Vinegar as someone told me all the benefits it has for a person's body. It can't be the distilled kind as that takes all the good things out of it. I feel better I think. Not sure if it's that or in my mind. Just started to take it. > > >>>>> >>>>> >>>>> Time of diagnosis until time of passing varies on each individual. The kind of liver damage and the diagnosis time frame only a couple of many, many factors Drs. have to consider for transplantation. There are limited numbers of doners and a patient has to be able to endure the surgery. >>>>> I my case- diagnosed in 2001, treatment that did not work 2002, cancer developed 3 times ( liver cancer surgery, raydiation therapies, etc. from then until I was listed in 2010. Gift of life given April 2010 but body attacking new liver and rejecting.  Had shut put in for the ascites, lactalose for amonias for encephalothopy. This is an ugly disease for the patient and the caregivers. It truly in Gods hands now for me as it sounds like it was for your father. I will pray for your family. >>>>> >>>>> SUE >>>>> >>>>> >>>>> To: " livercirrhosissupport " <livercirrhosissupport > >>>>> Sent: Sunday, January 29, 2012 6:04 AM >>>>> Subject: Re: I need help please. >>>>> >>>>> >>>>> >>>>> Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% >>chance, >>>>> should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. >>>>> >>>>> A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought i was >>>>> alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. >>>>> >>>>> i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. >>>>> >>>>> >>>>> Sincerely, >>>>> E. Bassett >>>>> >>>>>>________________________________ >>>>>> >>>>>>To: " livercirrhosissupport " <livercirrhosissupport > >>>>>>Sent: Sunday, January 29, 2012 4:38 AM >>>>>>Subject: Re: I need help please. >>>>>> >>>>>> >>>>>> >>>>>>The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. >>>>>> >>>>>>Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. >>>>>> >>>>>>Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a >>transplant >>>>>>hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? >>>>>> >>>>>>Love, and prayers , Bobby >>>>>> >>>>>>________________________________ >>>>>> >>>>>>To: livercirrhosissupport >>>>>>Sent: Thursday, January 26, 2012 7:00 PM >>>>>>Subject: Re: I need help please. >>>>>> >>>>>> >>>>>> >>>>>> >>>>>>Bobby, >>>>>> >>>>>>They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. >>>>>>He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. >>>>>>He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. >>>>>>He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. >>>>>> >>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Heya! I just posted it in another thread to keep from further jacking this one! Sincerely, E. Bassett >________________________________ > >To: livercirrhosissupport >Sent: Monday, January 30, 2012 8:36 PM >Subject: Re: I need help please. > >Hi , > >I would like to get this recipe if you don't mind. > >Thanks so much! >Roni > > > > >> >> >> I don't know if this would help, but we make our own laundry >> detergent and use vinegar as a fabric softner. My daughter used to >> have super sensitive skin and this was the only thing that wouldn't >> break her out. >> If anyone needs/wants it, I'll be happy to provide my recipe. 10$ >> worth of materials lasts use about 3 months for laundry, and we use >> the same stuff, in slightly different portions as dishwasher >> detergent. Yes, they are that similar. >> >> Sincerely, E. Bassett >> >> >________________________________ >> > >> >To: livercirrhosissupport >> >Sent: Monday, January 30, 2012 1:25 AM >> >Subject: Re: I need help please. >> > >> > >> > >> >Gloria, I can't use fabric softener of any kind, and most cleaning >> >products. I had to get rid of my cleaning lady bi weekly because she >> >insisted on using products with a strong smell to sterilize this >> >place. I don't care if it is sterile, been living in a very >> >unsanitary house for years, but can't take the smelly cleaning >> >products, or aerosols, take my breath away. My allergies really >> >started full fledged with the birth of my youngest son. He would >> >shoot out a fountain every time I took off his diaper, so I sprayed >> >with lysol or other spray product so it didn't smell up the couch. >> >Eventually had to take the couch out of the house and give it away. I >> >use All Free and Clear and it seems to work pretty good. My kids >> >couldn't use baby powder either, broke out in a rash, and it made me >> >sneeze. They have fumigated ou building twice now in the last two >> >weeks and it is really making sick, first and then really tired, >> sleep >> >most of the time and I can't find my inhaler. /the second time they >> >supposedly used something different which is supposed to be for >> people >> >like me, but still bothered. I belonged to one of those multilevel >> >marketing companies which sold laundry products which didn't bother >> >me, and they made the point in their sales presentation that >> everybody >> >is allergic to laundry products if you use too much and then start >> >sweating. Will itch like crazy. But I still had trouble with their >> >fabric softener because of the scent. Why can't we have a scentless >> >world? Jan >> > >> >On Sun, Jan 29, 2012 at 11:36 PM, Gloria >> wrote: >> >> Jan >> >> >> >> My son was born with excemafrom head to toe!! It runs in the >> family and he was blessed with a bad case. Because I had some >> cousins that had it bad, I knew that I would be lucky if I could use >> the so-called 99.9% pure products. I couldn't. >> >> >> >> I was fortunate enough to buy a small washer and dryer and hook >> it up in my apartment. To start with, absolutely no one was every >> allowed to run a load through and use those Bounce sheets and they >> had to use my laundry detergent. You don't want to know what those >> dryer sheets did to the son. When it came to laundry detergent, I >> finally started buying it from one of the multi-level businesses. >> Then, he didn't have problems. Absolutely nothing that had a scent >> to it, was another huge thing to be aware of. Baby powder or baby >> oil were definitely out!! >> >> >> >> He had cradle cap well into his teens, when it was up to him to >> be careful. His feet - oh his feet... He would wear and probably >> still does, sneakers all the time. The sweat etc caused him to have >> big hunks of dried skin between his toes. It was ugly. I was told >> when he was still a baby, that it was best that he had bare feet >> around the house. I ran out of disposable diapers at a time and so >> started using the cloth ones I had. Well, my mother forgot to tell >> me that 4 out of 5 of us were allergic to rubber pants. I thought >> that I had permanently disfigured his little private parts. >> >> >> >> To this very day, there are only 2 laundry products that I can >> use and thank heavens they are liquid now. I have not and will not >> use any dryer sheets. I was shown an absolutely wonderful way of >> softening my clothes. You take an old cloth of some kind, usually a >> bit bigger than a washcloth and just pore some cheap fabric softener >> on it and throw it in the dryer. That method has never bothered >> either one of us. >> >> >> >> I've had to go back on my anti-histamines because of the itchy. >> I buy a product that is dirt cheap and is the exact same as >> Chlortriplon. It goes a long way to stopping the itch. >> >> >> >> Gloria >> >> >> >> >> >> >> >> ________________________________ >> >> >> >> >> >> >> >> >> >> I don't want to interrupt this thread. Just reading all the emails >> >> for the last couple of days has made my eyes tear, and I don't have >> >> any tears, eyes too dry. But there is something I want to inform >> >> everybody about and I don't know how to start a thread. >> >> >> >> I have known for quite some time that some of my itching was being >> >> caused by something other than the cirrhosis. When I went to MN >> last >> >> May for my mother's funeral, I came home to a washer so full of >> soap >> >> it took 4 loads of washing nothing, just putting in a cup of >> vinegar >> >> in each load to get rid of some of the soap. The man I was living >> >> with washed his own clothes and had always used too much soap, >> had a >> >> rash on a good part of his body when I met him from all the soap >> left >> >> in his clothes. I got him to cut it down and the rash went >> away. But >> >> he still used too much, so I started running my clothes and the >> >> household laundry through two whole cycles to make sure the soap >> got >> >> out or so I thought. Well, after moving, getting my own new washer >> >> and dryer hooked up, using only about 2 T of soap to wash my >> clothes >> >> and none sometimes for my towels (This had been recommended by an >> >> article I read on how to do the laundry, especially with these new >> >> concentrated detergents) my itching is considerably less. Last >> week, >> >> it was cold here, so I put on a pair of leggings which I hadn't >> used >> >> since moving. I started itching like crazy again. When I took >> them >> >> off, the black leggings had white spots all over them, soap which >> had >> >> come out of them when I was wearing them. When I first mentioned >> >> seeing this white stuff on my black clothes I was told it was >> probably >> >> from the elastic they put in some of our clothes to give them a >> better >> >> fit. In some cases it may be, especially in older clothes, but >> if you >> >> wear dark clothes and notice white little spots all over them, and >> >> especially in areas where they are rubbed a lot, check your washer. >> >> Run some vinegar through it and make sure you see it after the wash >> >> cycle starts. I know some of you probably don't have this problem, >> >> but the regular itching from the cirrhosis is bad enough, we don't >> >> need to add to it by having soap in our clothes. The itching is a >> >> vicious cycle. If you itch enough that you bleed, then it forms a >> >> scab, the scab is full of the toxins which caused the itching in >> the >> >> first place, so causes more itching, bigger sore, and on and on. >> >> Until my washer was hooked up which took about 2 months, I had to >> go >> >> to the laundromat. The owner told me which machines to use, the >> older >> >> ones as they use more water and more apt to get the soap out, but >> they >> >> were still full of soap. If you don't have your own washer, do >> >> anything you can to get one. Test your clothes by putting them >> in the >> >> kitchen sink and swishing them around. You will probably see soap >> >> suds. Hope this helps someone. Jan >> >> >> >> On Sun, Jan 29, 2012 at 3:00 PM, sue steffin >> wrote: >> >>> >> >>> >> >>> Time of diagnosis until time of passing varies on each >> individual. The kind of liver damage and the diagnosis time frame >> only a couple of many, many factors Drs. have to consider for >> transplantation. There are limited numbers of doners and a patient >> has to be able to endure the surgery. >> >>> I my case- diagnosed in 2001, treatment that did not work 2002, >> cancer developed 3 times ( liver cancer surgery, raydiation >> therapies, etc. from then until I was listed in 2010. Gift of life >> given April 2010 but body attacking new liver and rejecting. Had >> shut put in for the ascites, lactalose for amonias for >> encephalothopy. This is an ugly disease for the patient and the >> caregivers. It truly in Gods hands now for me as it sounds like it >> was for your father. I will pray for your family. >> >>> >> >>> SUE >> >>> >> >>> >> >>> To: " livercirrhosissupport " <livercirrhosissupport >> > >> >>> Sent: Sunday, January 29, 2012 6:04 AM >> >>> Subject: Re: I need help please. >> >>> >> >>> >> >>> >> >>> Whenever my father was diagnosed with ESLD, it took almost a 2 >> months for my father to get rejected for a transplant. By the time >> he was rejected from the first group, his condition was waning (a >> few bad bouts of encephalopathy, skyrocketing ammonia, >> uncontrollably high blood sugar, the ascities filling quicker which >> needed more draining, more yellowing, more issues with taking in/ >> holding in food, and more). We had been looking at going to Mayo >> for about 3 wks and this made him go (going to Rochester, MN from >> Tulsa). His original specialist and the one who broke the news said >> he would advise us to do whatever we thought needed to do. I could >> read his face like a book, and I know he felt bad telling my Dad and >> Mom, since all the grandkids and my brother and myself were within >> an earshot. Inconvenient or not, all of my family sticks together >> even if it is in a hospital room the size of a small closet. I >> asked even if there was a 1% chance, >> >>> should we follow it - the doctor looked like he wanted us to >> keep up hope but the prognosis was grim. He said one percent was >> better then none - do what we needed to do and quick. >> >>> >> >>> A friend's boss offered to fly my dad to Mayo two days later and >> an appointment was set. Dad went through 2 days of testing and >> doctor's, and was told the opinion of his Mayo hepatologist that he >> wouldn't advise the transplant, that day should go home and be >> comfortable and not worry about his blood sugar, ammonia, sodium, >> etc... I appreciate their efforts and for not wasting my dad's time. >> The very next day, Dad came home. About 5 days after they got back, >> my dad slipped into a coma and hospice was called in. I spent the >> entire time that night, minus about 1.5 hours whenever my mom >> relieved me, talking to him, turning the tv to law and order or csi >> or ncis, reading his facebook to him, reading bible verses to him, >> going through photo albums telling him what photos i was looking at, >> anything to let him know someone was there - i wasn't sure if he was >> there or not but if i were and i was coming in and out, i'd be >> freaked out if i thought i was >> >>> alone. during this time, too, whenever i'd be talking to him >> about our family or my daughter who was just a year old, his eyes >> would start watering like he was tearing up. i don't know if that >> was him, but i sure hope he heard some of what i said. About 24 >> hours after slipping into the coma, he passed with us at his side. >> >>> >> >>> i digress majorly...but how long does it normally take for the >> transplant panel to get your request and review it? i cannot >> remember why it took that long for my dad or maybe none of us >> thought to ask in my family. from time or diagnosis to time of >> death for my dad was just under 2.5 months. >> >>> >> >>> >> >>> Sincerely, >> >>> E. Bassett >> >>> >> >>>>________________________________ >> >>>> >> >>>>To: " livercirrhosissupport " <livercirrhosissupport >> > >> >>>>Sent: Sunday, January 29, 2012 4:38 AM >> >>>>Subject: Re: I need help please. >> >>>> >> >>>> >> >>>> >> >>>>The shrunken liver makes sense to me. For most of us, our >> liver's capsule hides the cirrhosis very well. Mine does. >> >>>> >> >>>>Is he at a transplant center? Are these doctors liver doctors? I >> have just never heard of liver doctors " cross their fingers " that a >> mans' liver will start " compensating " again , at least not in front >> of the family. >> >>>> >> >>>>Hepatologists (liver doctors) are usually very scientific, and >> have no sense of humor, and do not use slang, or at least rarely >> do. . I hope that some one there can do a liver transplant. At some >> point you might want to ask them point blank. If the patient is at a >> hospital which does liver transplants, they will evaluate for >> transplant for anyone who is not activly an alcoholic, or drug >> addict, and has end stage liver disease, (stage 4 fibrosis) who has >> experienced the first major complication, such as encephalopathy, >> ascites, and certainly liver failure. Severe obesity and other major >> health conditions might also affect the decision. A person in liver >> failure will be placed in a priority position for an organ in their >> region, which is why everyone waiting on the list have to wait. The >> last word is up to the transplant surgeon, and no one below him, and >> EVERYONE else is below him, except God. You might want to first find >> o0ut if he is in a >> transplant >> >>>>hospital, and then if he is, ask the " question " . If he is not, >> you might want to ask if he can be transferred to one if he is a >> possible candidate. Have they even told you that a liver transplant >> is the only treatment for this condition ? >> >>>> >> >>>>Love, and prayers , Bobby >> >>>> >> >>>>________________________________ >> >>>> >> >>>>To: livercirrhosissupport >> >>>>Sent: Thursday, January 26, 2012 7:00 PM >> >>>>Subject: Re: I need help please. >> >>>> >> >>>> >> >>>> >> >>>> >> >>>>Bobby, >> >>>> >> >>>>They haven't mentioned anything about a liver transplant. Just >> said they are crossing their fingers that his liver will start >> 'compensating' again. He's having some pretty significant confusion >> and lethargy. >> >>>>He's been in the hospital for over 3 weeks now. They say his >> kidneys aren't doing that hot, his ammonia is still elevated, and >> all that kind of stuff. >> >>>>He's on a pill to keep his blood pressure elevated, a pill to >> keep his heart rate down in a normal range, they just took him off >> the oxygen finally, they have him on lactulose 4 times a day, and >> 80mg of Lasix twice a day. >> >>>>He is also a diabetic, and is getting over pneumonia. They >> haven't been able to give me much information about anything really. >> Other than he is in Stage 4 liver failure with no need to biopsy >> because they can see the cirrhosis on the catscan they did. They >> said his liver is shrunken from the cirrhosis. >> >>>> >> >>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2012 Report Share Posted January 30, 2012 Thank you, Bob. I am pretty much a realist - I can handle bad news just so it can be dealt with, ya know? but the time from diagnosis to his passing seemed to have just happened in the blink of an eye - like we didn't have much time to think, just act and react if that makes sense. I couldn't ever really get a clear answer from his doctors about the wait and I know some things take time, but I guess I just didn't understand why it took so long (or what seemed like forever) to get to the stage where they would either reject or accept him. I mean I don't know what was worse - seeing him going through all that or not having him around anymore. He wasn't even 60. I am glad he's not sick anymore. It kills me that my daughter, who was barely one, won't get the chance to get have him and know him as her grandpa. *sigh* I miss him horribly. You just gotta keep your chin up and let the universe do what it is going to do. Love never dies, ya know? It just changes form. > > Dear , > > first let me express my condolences for the loss of your father. > " Patients with ESLD (end stage liver disease aka cirrhosis or stage 4 fibrosis of the liver on biopsy) who experiences their first major complication such as ascites, encephalopathy, variceal bleeding, liver failure, etc. should be evaluated for liver transplatation... " exerpt from " Hepatology- Practical guidelines: Evaluation of the patient for liver transplantation. " , a publication of the American association for the study of liver diseases. > >  The standard of care dictates that any person who is in need of a liver transplant get one. This does not always happen. Regions differ in how many organs per week come available. If you live in California your time to transplant is faster than if you live in Kansas. You need a higher MELD score in California though. Circumstances vary as well. A ragamuffin off the street will not get a transplant unless there is someone there to make a stink. That's just the way it is. Miracle Aimee is a lady who's husband joined this group briefly in 2007. Aimee was found to be in early stages of > liver failure in > > the fall of 2007. Her and her family lived in Pearl Harbor, her husband serving in the US Air force. As her condition worsened, she was airlifted in a giant hospital plane to Lackland Air force base, San Texas and placed on priority one standby for a transplant. She had some setbacks which prevented her from getting a liver right away, but after she had gotten past an infection, and they had her oxygen sats up, Aimee received a donor liver on the night of October 19, 2007. I guess it stands to reason that if you are active duty, they are going to be ny on the spot with that fresh liver when time comes. None of us, or our parents, brothers, sisters, and especially children are any different, in terms of fairness. We all deserve that chance. My biggest problem with liver disease care is that doctors seem to be the biggest chickens when it comes to telling us that our loved ones are going to expire soon unless someone can shell out a ton of > cash, and the patient has not done anything to " deserve " liver disease. That is another subject for another day. > Cirrhosis is such a strange disease. Last week we were talking about family members who poo poo this disease and say things like " oh, uncle hector lived for 20 years with cirrhosis. " My own father was guilty of this. I almost strangled him. Uncle never de-compensated!! People with de-compensated end stage liver disease have a 50/50 two year prognosis. Those are terrible stakes. I do not know why it is not more urgent to get folks evaluated for a transplant. On paper , it is, in reality, that is another story. Some people will howl at this, but I believe in an " opt out " donor rule rather than an " opt in " rule. This means they are going to harvest your organs unless you opt out while you are alive, or your family appeals on religious grounds. There would be no shortage of organs then, and we might not be having this conversation. > Age does not seem to be that big a factor in getting a transplant green light as much as I thought it might. Even if the patient is eventually deemed to not be a good candidate, I believe people should be given a chance to be evaluated at the very least. > > > In closing, to answer your question, (how long does it normally take for the transplant panel to get your request and review it?) No time at all, really. While you lie in ICU, the wheels can be set in motion, but only in a large, major hospital like a university teaching/transplant hospital. > UC , Loma , Colorado University, Cleveland Clinic, s Hopkins, they are examples of hospitals where you could come in with acute hepatic failure from Tylenol       poisoning, and get an emergency liver transplant, especially children. > > My hepatologist wrote a paper on a Vietnamese lady who picked and ate poisonous mushrooms. > > http://journals.lww.com/jcge/Abstract/2002/09000/Liver_Transplantation_in_Mushro\ om_Poisoning.16.aspx > > She was not in the hospital but a few days, and received an emergency liver transplant. This is not uncommon. It is the reason those with chronic liver disease wait on a list. The Vietnamese lady did not survive. > > Again, my condolences for your father. Sorry for the rambling. Love, Bobby > >  > > > ________________________________ > > To: " livercirrhosissupport " <livercirrhosissupport > > Sent: Sunday, January 29, 2012 5:04 AM > Subject: Re: I need help please. > > >  > Whenever my father was diagnosed with ESLD, it took almost a 2 months for my father to get rejected for a transplant. By the time he was rejected from the first group, his condition was waning (a few bad bouts of encephalopathy, skyrocketing ammonia, uncontrollably high blood sugar, the ascities filling quicker which needed more draining, more yellowing, more issues with taking in/holding in food, and more). We had been looking at going to Mayo for about 3 wks and this made him go (going to Rochester, MN from Tulsa). His original specialist and the one who broke the news said he would advise us to do whatever we thought needed to do. I could read his face like a book, and I know he felt bad telling my Dad and Mom, since all the grandkids and my brother and myself were within an earshot. Inconvenient or not, all of my family sticks together even if it is in a hospital room the size of a small closet. I asked even if there was a 1% chance, > should we follow it - the doctor looked like he wanted us to keep up hope but the prognosis was grim. He said one percent was better then none - do what we needed to do and quick. > > A friend's boss offered to fly my dad to Mayo two days later and an appointment was set. Dad went through 2 days of testing and doctor's, and was told the opinion of his Mayo hepatologist that he wouldn't advise the transplant, that day should go home and be comfortable and not worry about his blood sugar, ammonia, sodium, etc... I appreciate their efforts and for not wasting my dad's time. The very next day, Dad came home. About 5 days after they got back, my dad slipped into a coma and hospice was called in. I spent the entire time that night, minus about 1.5 hours whenever my mom relieved me, talking to him, turning the tv to law and order or csi or ncis, reading his facebook to him, reading bible verses to him, going through photo albums telling him what photos i was looking at, anything to let him know someone was there - i wasn't sure if he was there or not but if i were and i was coming in and out, i'd be freaked out if i thought > i was > alone. during this time, too, whenever i'd be talking to him about our family or my daughter who was just a year old, his eyes would start watering like he was tearing up. i don't know if that was him, but i sure hope he heard some of what i said. About 24 hours after slipping into the coma, he passed with us at his side. > > i digress majorly...but how long does it normally take for the transplant panel to get your request and review it? i cannot remember why it took that long for my dad or maybe none of us thought to ask in my family. from time or diagnosis to time of death for my dad was just under 2.5 months. > >  > Sincerely, > E. Bassett > > >________________________________ > > > >To: " livercirrhosissupport " <livercirrhosissupport > > >Sent: Sunday, January 29, 2012 4:38 AM > >Subject: Re: I need help please. > > > > > > > >The shrunken liver makes sense to me. For most of us, our liver's capsule hides the cirrhosis very well. Mine does. > > > >Is he at a transplant center? Are these doctors liver doctors? I have just never heard of liver doctors " cross their fingers " that a mans' liver will start " compensating " again , at least not in front of the family. > > > >Hepatologists (liver doctors) are usually very scientific, and have no sense of humor, and do not use slang, or at least rarely do. . I hope that some one there can do a liver transplant. At some point you might want to ask them point blank. If the patient is at a hospital which does liver transplants, they will evaluate for transplant for anyone who is not activly an alcoholic, or drug addict, and has end stage liver disease, (stage 4 fibrosis) who has experienced the first major complication, such as encephalopathy, ascites, and certainly liver failure. Severe obesity and other major health conditions might also affect the decision. A person in liver failure will be placed in a priority position for an organ in their region, which is why everyone waiting on the list have to wait. The last word is up to the transplant surgeon, and no one below him, and EVERYONE else is below him, except God. You might want to first find o0ut if he is in a > transplant > >hospital, and then if he is, ask the " question " . If he is not, you might want to ask if he can be transferred to one if he is a possible candidate. Have they even told you that a liver transplant is the only treatment for this condition ? > > > >Love, and prayers , Bobby > > > >________________________________ > > > >To: livercirrhosissupport > >Sent: Thursday, January 26, 2012 7:00 PM > >Subject: Re: I need help please. > > > > > > > > > >Bobby, > > > >They haven't mentioned anything about a liver transplant. Just said they are crossing their fingers that his liver will start 'compensating' again. He's having some pretty significant confusion and lethargy. > >He's been in the hospital for over 3 weeks now. They say his kidneys aren't doing that hot, his ammonia is still elevated, and all that kind of stuff. > >He's on a pill to keep his blood pressure elevated, a pill to keep his heart rate down in a normal range, they just took him off the oxygen finally, they have him on lactulose 4 times a day, and 80mg of Lasix twice a day. > >He is also a diabetic, and is getting over pneumonia. They haven't been able to give me much information about anything really. Other than he is in Stage 4 liver failure with no need to biopsy because they can see the cirrhosis on the catscan they did. They said his liver is shrunken from the cirrhosis. > > > > Quote Link to comment Share on other sites More sharing options...
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