Guest guest Posted August 14, 2011 Report Share Posted August 14, 2011 Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. Let me ask this, what exactly did your husband get diagnosed with? Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby  ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Friday, August 12, 2011 10:40 PM Subject: Questions  Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. Is any of this familar? Is it normal? That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2011 Report Share Posted August 17, 2011 Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Wednesday, August 17, 2011 11:24 PM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 Hi Fran: Jackie here. All I can say is Thank God for Depends! I remember when my husband started on lactulose. The first thing I did was put depends on him. They worked like a charm. We were at home and particularly, when he was too tired to get out of bed he could get some sleep with peace of mind. Once he was awake he would want to get up and use the bathroom, which was next to the bedroom. I would get him into the shower and clean him up, then put on a new depend. They are like pull ups, so they fit good and nothing leaks out of them. After he was on lactulose for awhile his liver dr. added Xifaxin to the mix and that worked great. It eased the diaharrea and yet got rid of the toxins at the same time. There's alot you go thru as a caregiver of someone with this disease. Please keep that sense of humor. I have written a book about our experience. It's soon to be published. Jackie From: f_fwb <no_reply > To: livercirrhosissupport Sent: Thursday, August 18, 2011 1:24 AM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 Thanks for the laugh Fran ... got to laugh at ourselves sometimes .... janetB " Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson... " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 Bobby  How much root beer to the lactulose? To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 4:27 AM Subject: Re: Questions and answers  Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Wednesday, August 17, 2011 11:24 PM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 bobby, i am with you on the alcohol,in the beginning i blamed myself and didn't want the treatment or tp i didn't feel deserving.but my dr's said i was as deserving as anyone else and i sure didn't ask for this disease.and everyday i feel like crap and have problems after problems and all the suffering i am doing know i damn well deserve another chance.and if anyone who doesn't think so i say the same screw them.34 months sober yesterday thank god for aa. bev To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 2:27 AM Subject: Re: Questions and answers  Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Wednesday, August 17, 2011 11:24 PM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2011 Report Share Posted August 18, 2011 way to go Bev Annie > To: livercirrhosissupport > From: beverly_hurlock@... > Date: Thu, 18 Aug 2011 21:31:04 -0700 > Subject: Re: Questions and answers > > bobby, i am with you on the alcohol,in the beginning i blamed myself and didn't want the treatment or tp i didn't feel deserving.but my dr's said i was as deserving as anyone else and i sure didn't ask for this disease.and everyday i feel like crap and have problems after problems and all the suffering i am doing know i damn well deserve another chance.and if anyone who doesn't think so i say the same screw them.34 months sober yesterday thank god for aa. > bev > > > To: " livercirrhosissupport " <livercirrhosissupport > > Sent: Thursday, August 18, 2011 2:27 AM > Subject: Re: Questions and answers > > > > > Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. > I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my frustrations out. > They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. > Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! > So much for that lesson.... > > > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2011 Report Share Posted August 19, 2011 Thanks to all for comments and suggestions. Excuse me, but it is quicker to thank all in one reply, I do not thank one member more than the other. I learned hubby's ammonia level today, it has RISEN every time it is measured (correct term ?). 54 at admission, 69 this am. His dose of Lactulose was increased, then again. Now, another med I don't remember the name of at this time was added, I do remember it is in pill form. The main Dr said the gastro Dr knew of it and suggested it. He is just not responding, tummy getting bigger, (has not been drained, they said they hold that till last, wanting the fluid to be taken away with meds first) more slurred speech, sleeps or dozes unless awakened or disturbed. I understand each person is different as to their response. However, Dr said they are doing all they can, and it is not working. I was afraid to ask what this meant.... Is 69 dangerously high?? Does that mean coma is next? Fran > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2011 Report Share Posted August 19, 2011 Bev - You are probably a stronger person for having gotten sober and stayed sober for that long than many people who have never had a drink. Saying you can't have a transplant because you need because you used to drink too much is like saying you can't have your stomach reduced, or the other treatments they do for obese people because you are overweight. Jan > bobby, i am with you on the alcohol,in the beginning i blamed myself and > didn't want the treatment or tp i didn't feel deserving.but my dr's said i > was as deserving as anyone else and i sure didn't ask for this disease.and > everyday i feel like crap and have problems after problems and all the > suffering i am doing know i damn well deserve another chance.and if anyone > who doesn't think so i say the same screw them.34 months sober yesterday > thank god for aa. > bev > > > To: " livercirrhosissupport " > <livercirrhosissupport > > Sent: Thursday, August 18, 2011 2:27 AM > Subject: Re: Questions and answers > > > > > Dear Fran, I totally get what you are saying about the lactulose problem in > the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, the ICU > will actually use lactulose enemas. Now I am talking about a totally > unconscious patient here. I am sure that the therapy is not for the faint of > heart. They say it is like bringing them back from the dead. They clear out > the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and on a > draw sheet with a chux, which is a blue plastic pad which can easily be > rolled up after the patient makes a mess. It was really no problem for them > at all. After being transfered to the regular floor, they tried an adult > diaper, which was much much worse. The mess was 10 times worse! This was > because there was one nurse for 10 patients, instead of two nurses for one > patient. The thing I learned though, after spending about 100 days total in > the hospital by her side, is that the good nurses and CNA'S are really used > to this job, and make it look easy. It is not your husbands fault he has a > sick liver. Disease happens. You can eat all healthy, never drink alcohol, > or smoke , and still die of a disease. Alcoholism is a disease. In the > future, you should put a well written sign on his room door with exactly > what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each nursing shift > will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I say screw > them, they will get to spend time on a potty chair waiting for some one to > come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail on > ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I took > hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the dosage, as > there was hardly any improvement on the low doses. It was explained to me > that they start low and increase dosage as necessary, so as not to swing the > balance too far in the other direction. > I have had lots of talks with doctors and nurses, and since the kidneys are > not affected, he has a good chance of staying at the level he is now, with > the medications. No talk yet of stomach drainage, other than it may be in > the future if the fluid does not lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my frustrations > out. > They give him a strong laxative and a sedative at the same time! I asked how > that could possibly work the best, and they said if he soils the bed, > they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is > necessary. Most times I have to go find a nurse, as the buzzer is seldom > answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic > Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they feel > put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how to best > manage the male urinal bottle. With IV's connected to IV's, his output was > massive. I wanted to know if it was best for him to lie flat on his back, > etc. > Nurse Lesson Giver said no, with the head elevated, and she proceeded to > demonstrate. I gave hubby the OK the unrinal was in the correct position, > and he released the flow. Nothing. I said can't you go? He said I am going, > in fact, I am through. There was nothing in the urinal, but there was plenty > under him and on his gown! > So much for that lesson.... > > >> >> Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out >> by being a moderator here. I am not a doctor, the things I know come from >> taking care of my dearest friend Ardis who died of liver disease 5 years >> ago this month, and then I was diagnosed with the exact same thing a short >> while after her death. Both if us were drinkers, but after she died, I >> quit for good, and have been sober and a member of AA since. >> >> >> Let me ask this, what exactly did your husband get diagnosed with? >> >> Swelling in the feet and belly is a sign of chronic end stage liver >> disease, also called cirrhosis of the liver, but the slow speech and >> mental status changes are considered by many to be a medical emergency >> situation. There is a medicine which helps clear toxins that the sick >> liver cannot clear, but it doesnt sound as though your husband is taking >> this. It is called Lactulose. If he seems slurred speech or like he is >> having dementia, he should really be seen asap. Some folks would actually >> call 911,... I know I did when Ardis had these symptoms. Once I found her >> sitting in her bathtub dressed only in a t shirt, and she couldnt get out, >> so she went in the ambulance, and they got her squared away in a few >> days... The condition she had is called hepatic encephalopathy. I also >> have this as well as several of us, and keep in under control by taking >> lactulose every day. Write back, and let us know how it goes, and good >> luck. Love, Bobby >> >>  >> >> >> ________________________________ >> From: f_fwb <no_reply > >> To: livercirrhosissupport >> Sent: Friday, August 12, 2011 10:40 PM >> Subject: Questions >> >> >>  >> Hello to all. I have questions I can't find answers to by reading about >> cirrhosis on the Internet. My active, self-employed 72 yr old husband was >> diagnosed just over a year ago, but was not told to come back for regular >> checkups, etc. Neither the primary doctor or the gastroenterogist seemed >> willing to give us the time to ask. We have an appointment with a liver >> specialist on Aug 22, but I am concerned my husband will get worse before >> then, if I don't get answers to something I may need to know before then. >> He has appeared to have no symptoms, until recently when I noticed he >> seemed to pay more attention to something in the room than his dinner >> plate. He started tiring easily, and his nights of insomnia suddenly went >> from 1 every 3 months to 2-3 per week. The part that started my worrying >> me was his feet started swelling about a month ago, then I realized his >> stomach had been gradually swelling for longer than that, and we just >> thought he was gaining weight. Now, he has no naval indention, and he >> looks like he is 9 months pregnant. Two weeks ago, he started walking and >> talking as if in slow motion, and he has a different look in his eyes. He >> has trouble focusing even with his glasses, but the look in his eyes is >> one I can't describe, it is as if he is drugged. He had not changed or >> added medication up to this point. >> Is any of this familar? Is it normal? >> That far-a-way look in his eyes concerns me that I should consider not >> waiting until the 22nd, but seek medical attention by taking him to an ER >> if he gets worse. The primary doctor did not give his eyes any attention >> when I pointed this out to him this past Monday. He was seeing the doctor >> for what was diagnosed as bursitis of the elbow, it was drained, and had >> no infection. He had not injured his elbow, so could it be related to the >> other swellings? >> Thank you for any advice, we have basically lived a normal life in the >> year since he was diagnosed, and were not prepared for this sudden turn of >> events. >> >> Fran >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2011 Report Share Posted August 19, 2011 Good for you, Bev! Sticking to it is hard and though I don't know you, I am proud of you. Questions > > > Â > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 thanks jan,that helped see it another way also. take care bev To: livercirrhosissupport Sent: Friday, August 19, 2011 2:25 PM Subject: Re: Questions and answers  Bev - You are probably a stronger person for having gotten sober and stayed sober for that long than many people who have never had a drink. Saying you can't have a transplant because you need because you used to drink too much is like saying you can't have your stomach reduced, or the other treatments they do for obese people because you are overweight. Jan > bobby, i am with you on the alcohol,in the beginning i blamed myself and > didn't want the treatment or tp i didn't feel deserving.but my dr's said i > was as deserving as anyone else and i sure didn't ask for this disease.and > everyday i feel like crap and have problems after problems and all the > suffering i am doing know i damn well deserve another chance.and if anyone > who doesn't think so i say the same screw them.34 months sober yesterday > thank god for aa. > bev > > > To: " livercirrhosissupport " > <livercirrhosissupport > > Sent: Thursday, August 18, 2011 2:27 AM > Subject: Re: Questions and answers > > > > > Dear Fran, I totally get what you are saying about the lactulose problem in > the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, the ICU > will actually use lactulose enemas. Now I am talking about a totally > unconscious patient here. I am sure that the therapy is not for the faint of > heart. They say it is like bringing them back from the dead. They clear out > the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and on a > draw sheet with a chux, which is a blue plastic pad which can easily be > rolled up after the patient makes a mess. It was really no problem for them > at all. After being transfered to the regular floor, they tried an adult > diaper, which was much much worse. The mess was 10 times worse! This was > because there was one nurse for 10 patients, instead of two nurses for one > patient. The thing I learned though, after spending about 100 days total in > the hospital by her side, is that the good nurses and CNA'S are really used > to this job, and make it look easy. It is not your husbands fault he has a > sick liver. Disease happens. You can eat all healthy, never drink alcohol, > or smoke , and still die of a disease. Alcoholism is a disease. In the > future, you should put a well written sign on his room door with exactly > what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each nursing shift > will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I say screw > them, they will get to spend time on a potty chair waiting for some one to > come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail on > ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I took > hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the dosage, as > there was hardly any improvement on the low doses. It was explained to me > that they start low and increase dosage as necessary, so as not to swing the > balance too far in the other direction. > I have had lots of talks with doctors and nurses, and since the kidneys are > not affected, he has a good chance of staying at the level he is now, with > the medications. No talk yet of stomach drainage, other than it may be in > the future if the fluid does not lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my frustrations > out. > They give him a strong laxative and a sedative at the same time! I asked how > that could possibly work the best, and they said if he soils the bed, > they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is > necessary. Most times I have to go find a nurse, as the buzzer is seldom > answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic > Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they feel > put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how to best > manage the male urinal bottle. With IV's connected to IV's, his output was > massive. I wanted to know if it was best for him to lie flat on his back, > etc. > Nurse Lesson Giver said no, with the head elevated, and she proceeded to > demonstrate. I gave hubby the OK the unrinal was in the correct position, > and he released the flow. Nothing. I said can't you go? He said I am going, > in fact, I am through. There was nothing in the urinal, but there was plenty > under him and on his gown! > So much for that lesson.... > > >> >> Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out >> by being a moderator here. I am not a doctor, the things I know come from >> taking care of my dearest friend Ardis who died of liver disease 5 years >> ago this month, and then I was diagnosed with the exact same thing a short >> while after her death. Both if us were drinkers, but after she died, I >> quit for good, and have been sober and a member of AA since. >> >> >> Let me ask this, what exactly did your husband get diagnosed with? >> >> Swelling in the feet and belly is a sign of chronic end stage liver >> disease, also called cirrhosis of the liver, but the slow speech and >> mental status changes are considered by many to be a medical emergency >> situation. There is a medicine which helps clear toxins that the sick >> liver cannot clear, but it doesnt sound as though your husband is taking >> this. It is called Lactulose. If he seems slurred speech or like he is >> having dementia, he should really be seen asap. Some folks would actually >> call 911,... I know I did when Ardis had these symptoms. Once I found her >> sitting in her bathtub dressed only in a t shirt, and she couldnt get out, >> so she went in the ambulance, and they got her squared away in a few >> days... The condition she had is called hepatic encephalopathy. I also >> have this as well as several of us, and keep in under control by taking >> lactulose every day. Write back, and let us know how it goes, and good >> luck. Love, Bobby >> >>  >> >> >> ________________________________ >> From: f_fwb <no_reply > >> To: livercirrhosissupport >> Sent: Friday, August 12, 2011 10:40 PM >> Subject: Questions >> >> >>  >> Hello to all. I have questions I can't find answers to by reading about >> cirrhosis on the Internet. My active, self-employed 72 yr old husband was >> diagnosed just over a year ago, but was not told to come back for regular >> checkups, etc. Neither the primary doctor or the gastroenterogist seemed >> willing to give us the time to ask. We have an appointment with a liver >> specialist on Aug 22, but I am concerned my husband will get worse before >> then, if I don't get answers to something I may need to know before then. >> He has appeared to have no symptoms, until recently when I noticed he >> seemed to pay more attention to something in the room than his dinner >> plate. He started tiring easily, and his nights of insomnia suddenly went >> from 1 every 3 months to 2-3 per week. The part that started my worrying >> me was his feet started swelling about a month ago, then I realized his >> stomach had been gradually swelling for longer than that, and we just >> thought he was gaining weight. Now, he has no naval indention, and he >> looks like he is 9 months pregnant. Two weeks ago, he started walking and >> talking as if in slow motion, and he has a different look in his eyes. He >> has trouble focusing even with his glasses, but the look in his eyes is >> one I can't describe, it is as if he is drugged. He had not changed or >> added medication up to this point. >> Is any of this familar? Is it normal? >> That far-a-way look in his eyes concerns me that I should consider not >> waiting until the 22nd, but seek medical attention by taking him to an ER >> if he gets worse. The primary doctor did not give his eyes any attention >> when I pointed this out to him this past Monday. He was seeing the doctor >> for what was diagnosed as bursitis of the elbow, it was drained, and had >> no infection. He had not injured his elbow, so could it be related to the >> other swellings? >> Thank you for any advice, we have basically lived a normal life in the >> year since he was diagnosed, and were not prepared for this sudden turn of >> events. >> >> Fran >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 fran, is your husband on a flood pill.aor aldactone? i am on xifaxan to help with my enceptalopathy. i am not sure about the ammonia level numbers but i will check and see what the ranges should be and get back to you. prayers are with you and your husband. bev,tx From: f_fwb <no_reply > To: livercirrhosissupport Sent: Friday, August 19, 2011 2:15 PM Subject: Re: Questions and answers  Thanks to all for comments and suggestions. Excuse me, but it is quicker to thank all in one reply, I do not thank one member more than the other. I learned hubby's ammonia level today, it has RISEN every time it is measured (correct term ?). 54 at admission, 69 this am. His dose of Lactulose was increased, then again. Now, another med I don't remember the name of at this time was added, I do remember it is in pill form. The main Dr said the gastro Dr knew of it and suggested it. He is just not responding, tummy getting bigger, (has not been drained, they said they hold that till last, wanting the fluid to be taken away with meds first) more slurred speech, sleeps or dozes unless awakened or disturbed. I understand each person is different as to their response. However, Dr said they are doing all they can, and it is not working. I was afraid to ask what this meant.... Is 69 dangerously high?? Does that mean coma is next? Fran > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 I use about one cup of root beer or diet root beer mixed with the lactulose and poured over ice. Love, Bobby  To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 12:13 PM Subject: Re: Questions and answers  Bobby  How much root beer to the lactulose? To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 4:27 AM Subject: Re: Questions and answers  Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Wednesday, August 17, 2011 11:24 PM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Good for you, Bev!! Love, Bobby  ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 10:31 PM Subject: Re: Questions and answers  bobby, i am with you on the alcohol,in the beginning i blamed myself and didn't want the treatment or tp i didn't feel deserving.but my dr's said i was as deserving as anyone else and i sure didn't ask for this disease.and everyday i feel like crap and have problems after problems and all the suffering i am doing know i damn well deserve another chance.and if anyone who doesn't think so i say the same screw them.34 months sober yesterday thank god for aa. bev To: " livercirrhosissupport " <livercirrhosissupport > Sent: Thursday, August 18, 2011 2:27 AM Subject: Re: Questions and answers  Dear Fran, I totally get what you are saying about the lactulose problem in the hospital. When liver cirrhosis patients go in to a coma because of ammonia, the ICU will actually use lactulose enemas. Now I am talking about a totally unconscious patient here. I am sure that the therapy is not for the faint of heart. They say it is like bringing them back from the dead. They clear out the toxins and the patient wakes right up! When Ardis was in the ICU, they kept her naked under her gown, and on a draw sheet with a chux, which is a blue plastic pad which can easily be rolled up after the patient makes a mess. It was really no problem for them at all. After being transfered to the regular floor, they tried an adult diaper, which was much much worse. The mess was 10 times worse! This was because there was one nurse for 10 patients, instead of two nurses for one patient. The thing I learned though, after spending about 100 days total in the hospital by her side, is that the good nurses and CNA'S are really used to this job, and make it look easy. It is not your husbands fault he has a sick liver. Disease happens. You can eat all healthy, never drink alcohol, or smoke , and still die of a disease. Alcoholism is a disease. In the future, you should put a well written sign on his room door with exactly what you said...( SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE) No one else will, and the funny thing is that each nursing shift will think that the one before them did it!! LOL For those people who blame an alcoholic like me for my disease, I say screw them, they will get to spend time on a potty chair waiting for some one to come clean thier butt too!! Love, Bobby PS, a toast to this group with my lactulose /and root beer cocktail on ice... CHEERS!! ________________________________ From: f_fwb <no_reply > To: livercirrhosissupport Sent: Wednesday, August 17, 2011 11:24 PM Subject: Re: Questions and answers  Thanks to all who offered support and advice. I came home from the hospital tonight to try to get some sleep, as I took hubby to the ER after reading suggestion it might be necessary. Good thing I did, he was experiencing hepatic encephalopathy. He was admitted, and given Lactulose. Today, they increased the dosage, as there was hardly any improvement on the low doses. It was explained to me that they start low and increase dosage as necessary, so as not to swing the balance too far in the other direction. I have had lots of talks with doctors and nurses, and since the kidneys are not affected, he has a good chance of staying at the level he is now, with the medications. No talk yet of stomach drainage, other than it may be in the future if the fluid does not lessen with the Lactulose. Now, I am happy as can be with this, but have to let all my frustrations out. They give him a strong laxative and a sedative at the same time! I asked how that could possibly work the best, and they said if he soils the bed, they'll change it. He did, they did. To prevent this in the future, they suggested we ring BEFORE it is necessary. Most times I have to go find a nurse, as the buzzer is seldom answered. I sugested they make a note for his room buzzer, SEDATED Hepatic Encephalopathy Patient with STRONG LAXATIVE Reflexes! I am beginning to feel as if they have no sympathy for a person they feel put themselves in their position.... Thanks for all the support, and the soapbox. Fran Now for a little humor in all this mix...I asked for a lesson in how to best manage the male urinal bottle. With IV's connected to IV's, his output was massive. I wanted to know if it was best for him to lie flat on his back, etc. Nurse Lesson Giver said no, with the head elevated, and she proceeded to demonstrate. I gave hubby the OK the unrinal was in the correct position, and he released the flow. Nothing. I said can't you go? He said I am going, in fact, I am through. There was nothing in the urinal, but there was plenty under him and on his gown! So much for that lesson.... > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I help out by being a moderator here. I am not a doctor, the things I know come from taking care of my dearest friend Ardis who died of liver disease 5 years ago this month, and then I was diagnosed with the exact same thing a short while after her death. Both if us were drinkers, but after she died, I quit for good, and have been sober and a member of AA since. > > > Let me ask this, what exactly did your husband get diagnosed with? > > Swelling in the feet and belly is a sign of chronic end stage liver disease, also called cirrhosis of the liver, but the slow speech and mental status changes are considered by many to be a medical emergency situation. There is a medicine which helps clear toxins that the sick liver cannot clear, but it doesnt sound as though your husband is taking this. It is called Lactulose. If he seems slurred speech or like he is having dementia, he should really be seen asap. Some folks would actually call 911,... I know I did when Ardis had these symptoms. Once I found her sitting in her bathtub dressed only in a t shirt, and she couldnt get out, so she went in the ambulance, and they got her squared away in a few days... The condition she had is called hepatic encephalopathy. I also have this as well as several of us, and keep in under control by taking lactulose every day. Write back, and let us know how it goes, and good luck. Love, Bobby > >  > > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Friday, August 12, 2011 10:40 PM > Subject: Questions > > >  > Hello to all. I have questions I can't find answers to by reading about cirrhosis on the Internet. My active, self-employed 72 yr old husband was diagnosed just over a year ago, but was not told to come back for regular checkups, etc. Neither the primary doctor or the gastroenterogist seemed willing to give us the time to ask. We have an appointment with a liver specialist on Aug 22, but I am concerned my husband will get worse before then, if I don't get answers to something I may need to know before then. > He has appeared to have no symptoms, until recently when I noticed he seemed to pay more attention to something in the room than his dinner plate. He started tiring easily, and his nights of insomnia suddenly went from 1 every 3 months to 2-3 per week. The part that started my worrying me was his feet started swelling about a month ago, then I realized his stomach had been gradually swelling for longer than that, and we just thought he was gaining weight. Now, he has no naval indention, and he looks like he is 9 months pregnant. Two weeks ago, he started walking and talking as if in slow motion, and he has a different look in his eyes. He has trouble focusing even with his glasses, but the look in his eyes is one I can't describe, it is as if he is drugged. He had not changed or added medication up to this point. > Is any of this familar? Is it normal? > That far-a-way look in his eyes concerns me that I should consider not waiting until the 22nd, but seek medical attention by taking him to an ER if he gets worse. The primary doctor did not give his eyes any attention when I pointed this out to him this past Monday. He was seeing the doctor for what was diagnosed as bursitis of the elbow, it was drained, and had no infection. He had not injured his elbow, so could it be related to the other swellings? > Thank you for any advice, we have basically lived a normal life in the year since he was diagnosed, and were not prepared for this sudden turn of events. > > Fran > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2011 Report Share Posted August 20, 2011 Hey Bobby, aren't you coming up on your birthday in October or November? You'll be 5 right? Love, Roni > I use about one cup of root beer or diet root beer mixed with the > lactulose and poured over ice. Love, Bobby > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 12:13 PM > Subject: Re: Questions and answers > > > Bobby > > How much root beer to the lactulose? > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 4:27 AM > Subject: Re: Questions and answers > > > Dear Fran, I totally get what you are saying about the lactulose > problem in the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, > the ICU will actually use lactulose enemas. Now I am talking about a > totally unconscious patient here. I am sure that the therapy is not > for the faint of heart. They say it is like bringing them back from > the dead. They clear out the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and > on a draw sheet with a chux, which is a blue plastic pad which can > easily be rolled up after the patient makes a mess. It was really no > problem for them at all. After being transfered to the regular > floor, they tried an adult diaper, which was much much worse. The > mess was 10 times worse! This was because there was one nurse for 10 > patients, instead of two nurses for one patient. The thing I learned > though, after spending about 100 days total in the hospital by her > side, is that the good nurses and CNA'S are really used to this job, > and make it look easy. It is not your husbands fault he has a sick > liver. Disease happens. You can eat all healthy, never drink > alcohol, or smoke , and still die of a disease. Alcoholism is a > disease. In the future, you should put a well written sign on his > room door with exactly what you said...( SEDATED Hepatic > Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each > nursing shift will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I > say screw them, they will get to spend time on a potty chair waiting > for some one to come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail > on ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I > took hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the > dosage, as there was hardly any improvement on the low doses. It was > explained to me that they start low and increase dosage as > necessary, so as not to swing the balance too far in the other > direction. > I have had lots of talks with doctors and nurses, and since the > kidneys are not affected, he has a good chance of staying at the > level he is now, with the medications. No talk yet of stomach > drainage, other than it may be in the future if the fluid does not > lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my > frustrations out. > They give him a strong laxative and a sedative at the same time! I > asked how that could possibly work the best, and they said if he > soils the bed, they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is > necessary. Most times I have to go find a nurse, as the buzzer is > seldom answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic > Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they > feel put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how > to best manage the male urinal bottle. With IV's connected to IV's, > his output was massive. I wanted to know if it was best for him to > lie flat on his back, etc. > Nurse Lesson Giver said no, with the head elevated, and she > proceeded to demonstrate. I gave hubby the OK the unrinal was in the > correct position, and he released the flow. Nothing. I said can't > you go? He said I am going, in fact, I am through. There was nothing > in the urinal, but there was plenty under him and on his gown! > So much for that lesson.... > > > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I > help out by being a moderator here. I am not a doctor, the things I > know come from taking care of my dearest friend Ardis who died of > liver disease 5 years ago this month, and then I was diagnosed with > the exact same thing a short while after her death. Both if us were > drinkers, but after she died, I quit for good, and have been sober > and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage > liver disease, also called cirrhosis of the liver, but the slow > speech and mental status changes are considered by many to be a > medical emergency situation. There is a medicine which helps clear > toxins that the sick liver cannot clear, but it doesnt sound as > though your husband is taking this. It is called Lactulose. If he > seems slurred speech or like he is having dementia, he should really > be seen asap. Some folks would actually call 911,... I know I did > when Ardis had these symptoms. Once I found her sitting in her > bathtub dressed only in a t shirt, and she couldnt get out, so she > went in the ambulance, and they got her squared away in a few > days... The condition she had is called hepatic encephalopathy. I > also have this as well as several of us, and keep in under control > by taking lactulose every day. Write back, and let us know how it > goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading > about cirrhosis on the Internet. My active, self-employed 72 yr old > husband was diagnosed just over a year ago, but was not told to come > back for regular checkups, etc. Neither the primary doctor or the > gastroenterogist seemed willing to give us the time to ask. We have > an appointment with a liver specialist on Aug 22, but I am concerned > my husband will get worse before then, if I don't get answers to > something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed > he seemed to pay more attention to something in the room than his > dinner plate. He started tiring easily, and his nights of insomnia > suddenly went from 1 every 3 months to 2-3 per week. The part that > started my worrying me was his feet started swelling about a month > ago, then I realized his stomach had been gradually swelling for > longer than that, and we just thought he was gaining weight. Now, he > has no naval indention, and he looks like he is 9 months pregnant. > Two weeks ago, he started walking and talking as if in slow motion, > and he has a different look in his eyes. He has trouble focusing > even with his glasses, but the look in his eyes is one I can't > describe, it is as if he is drugged. He had not changed or added > medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider > not waiting until the 22nd, but seek medical attention by taking him > to an ER if he gets worse. The primary doctor did not give his eyes > any attention when I pointed this out to him this past Monday. He > was seeing the doctor for what was diagnosed as bursitis of the > elbow, it was drained, and had no infection. He had not injured his > elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in > the year since he was diagnosed, and were not prepared for this > sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 Thank you so much for remembering my sober birthday! Ardis died on August 3rd 2006...have you ever heard the Duran Duran song " ordinary world " ? The song starts with " came in from a rainy thursday on the avenue, thought I heard you talking softly, I turned on the light the tv and the radio, still I can't escape he ghost of you, what is happening to it all, crazy some are saying, where is the life that I recognize...(gone away) but I won't cry for yesterday, there's an ordinary world somehow I have to find...as I try to make my way to the ordinary world I wil learn to survive. http://www.youtube.com/watch?v=jigmwKc3zxg well, she died on a rainy thursday morning, and I cried and cried and drank beer for forty days and forty nights, a total of 550 cans,played that song over and over and over and at sunrise on September 11, 2006, I became a non drinker. The reason my sobriety birthday is the 15th is that I was having such severe DT symptoms by thursday, September14, I went to the neighborhood liquor store 4 blocks away for a 12 pack of beer , and drank them slowly until a bed was ready for me at the detox center in the morning. September 15, 2006, it will 5 years. I miss Ardis. Thanks for thinking of me, Roni. Love, Bobby ________________________________ To: livercirrhosissupport Sent: Saturday, August 20, 2011 10:35 PM Subject: Re: Questions and answers Hey Bobby, aren't you coming up on your birthday in October or November? You'll be 5 right? Love, Roni > I use about one cup of root beer or diet root beer mixed with the > lactulose and poured over ice. Love, Bobby > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 12:13 PM > Subject: Re: Questions and answers > > > Bobby > > How much root beer to the lactulose? > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 4:27 AM > Subject: Re: Questions and answers > > > Dear Fran, I totally get what you are saying about the lactulose > problem in the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, > the ICU will actually use lactulose enemas. Now I am talking about a > totally unconscious patient here. I am sure that the therapy is not > for the faint of heart. They say it is like bringing them back from > the dead. They clear out the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and > on a draw sheet with a chux, which is a blue plastic pad which can > easily be rolled up after the patient makes a mess. It was really no > problem for them at all. After being transfered to the regular > floor, they tried an adult diaper, which was much much worse. The > mess was 10 times worse! This was because there was one nurse for 10 > patients, instead of two nurses for one patient. The thing I learned > though, after spending about 100 days total in the hospital by her > side, is that the good nurses and CNA'S are really used to this job, > and make it look easy. It is not your husbands fault he has a sick > liver. Disease happens. You can eat all healthy, never drink > alcohol, or smoke , and still die of a disease. Alcoholism is a > disease. In the future, you should put a well written sign on his > room door with exactly what you said...( SEDATED Hepatic > Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each > nursing shift will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I > say screw them, they will get to spend time on a potty chair waiting > for some one to come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail > on ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I > took hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the > dosage, as there was hardly any improvement on the low doses. It was > explained to me that they start low and increase dosage as > necessary, so as not to swing the balance too far in the other > direction. > I have had lots of talks with doctors and nurses, and since the > kidneys are not affected, he has a good chance of staying at the > level he is now, with the medications. No talk yet of stomach > drainage, other than it may be in the future if the fluid does not > lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my > frustrations out. > They give him a strong laxative and a sedative at the same time! I > asked how that could possibly work the best, and they said if he > soils the bed, they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is > necessary. Most times I have to go find a nurse, as the buzzer is > seldom answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic > Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they > feel put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how > to best manage the male urinal bottle. With IV's connected to IV's, > his output was massive. I wanted to know if it was best for him to > lie flat on his back, etc. > Nurse Lesson Giver said no, with the head elevated, and she > proceeded to demonstrate. I gave hubby the OK the unrinal was in the > correct position, and he released the flow. Nothing. I said can't > you go? He said I am going, in fact, I am through. There was nothing > in the urinal, but there was plenty under him and on his gown! > So much for that lesson.... > > > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I > help out by being a moderator here. I am not a doctor, the things I > know come from taking care of my dearest friend Ardis who died of > liver disease 5 years ago this month, and then I was diagnosed with > the exact same thing a short while after her death. Both if us were > drinkers, but after she died, I quit for good, and have been sober > and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage > liver disease, also called cirrhosis of the liver, but the slow > speech and mental status changes are considered by many to be a > medical emergency situation. There is a medicine which helps clear > toxins that the sick liver cannot clear, but it doesnt sound as > though your husband is taking this. It is called Lactulose. If he > seems slurred speech or like he is having dementia, he should really > be seen asap. Some folks would actually call 911,... I know I did > when Ardis had these symptoms. Once I found her sitting in her > bathtub dressed only in a t shirt, and she couldnt get out, so she > went in the ambulance, and they got her squared away in a few > days... The condition she had is called hepatic encephalopathy. I > also have this as well as several of us, and keep in under control > by taking lactulose every day. Write back, and let us know how it > goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading > about cirrhosis on the Internet. My active, self-employed 72 yr old > husband was diagnosed just over a year ago, but was not told to come > back for regular checkups, etc. Neither the primary doctor or the > gastroenterogist seemed willing to give us the time to ask. We have > an appointment with a liver specialist on Aug 22, but I am concerned > my husband will get worse before then, if I don't get answers to > something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed > he seemed to pay more attention to something in the room than his > dinner plate. He started tiring easily, and his nights of insomnia > suddenly went from 1 every 3 months to 2-3 per week. The part that > started my worrying me was his feet started swelling about a month > ago, then I realized his stomach had been gradually swelling for > longer than that, and we just thought he was gaining weight. Now, he > has no naval indention, and he looks like he is 9 months pregnant. > Two weeks ago, he started walking and talking as if in slow motion, > and he has a different look in his eyes. He has trouble focusing > even with his glasses, but the look in his eyes is one I can't > describe, it is as if he is drugged. He had not changed or added > medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider > not waiting until the 22nd, but seek medical attention by taking him > to an ER if he gets worse. The primary doctor did not give his eyes > any attention when I pointed this out to him this past Monday. He > was seeing the doctor for what was diagnosed as bursitis of the > elbow, it was drained, and had no infection. He had not injured his > elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in > the year since he was diagnosed, and were not prepared for this > sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2011 Report Share Posted August 24, 2011 thats great bobby congrats. on the almost 5 yrs i will have 3 in oct. its a good feeling just wish i stoped before i got so sick. but we can't go back only go forward and take it one day at a time. bev To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, August 23, 2011 8:46 AM Subject: Re: Questions and answers  Thank you so much for remembering my sober birthday! Ardis died on August 3rd 2006...have you ever heard the Duran Duran song " ordinary world " ? The song starts with " came in from a rainy thursday on the avenue, thought I heard you talking softly, I turned on the light the tv and the radio, still I can't escape he ghost of you, what is happening to it all, crazy some are saying, where is the life that I recognize...(gone away) but I won't cry for yesterday, there's an ordinary world somehow I have to find...as I try to make my way to the ordinary world I wil learn to survive.  http://www.youtube.com/watch?v=jigmwKc3zxg well, she died on a rainy thursday morning, and I cried and cried and drank beer for forty days and forty nights, a total of 550 cans,played that song over and over and over and at sunrise on September 11, 2006, I became a non drinker. The reason my sobriety birthday is the 15th is that I was having such severe DT symptoms by thursday, September14, I went to the neighborhood liquor store 4 blocks away for a 12 pack of beer , and drank them slowly until a bed was ready for me at the detox center in the morning. September 15, 2006, it will 5 years. I miss Ardis. Thanks for thinking of me, Roni.     Love, Bobby  ________________________________ To: livercirrhosissupport Sent: Saturday, August 20, 2011 10:35 PM Subject: Re: Questions and answers Hey Bobby, aren't you coming up on your birthday in October or November? You'll be 5 right? Love, Roni > I use about one cup of root beer or diet root beer mixed with the > lactulose and poured over ice. Love, Bobby > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 12:13 PM > Subject: Re: Questions and answers > > > Bobby > > How much root beer to the lactulose? > > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Thursday, August 18, 2011 4:27 AM > Subject: Re: Questions and answers > > > Dear Fran, I totally get what you are saying about the lactulose > problem in the hospital. > > When liver cirrhosis patients go in to a coma because of ammonia, > the ICU will actually use lactulose enemas. Now I am talking about a > totally unconscious patient here. I am sure that the therapy is not > for the faint of heart. They say it is like bringing them back from > the dead. They clear out the toxins and the patient wakes right up! > > When Ardis was in the ICU, they kept her naked under her gown, and > on a draw sheet with a chux, which is a blue plastic pad which can > easily be rolled up after the patient makes a mess. It was really no > problem for them at all. After being transfered to the regular > floor, they tried an adult diaper, which was much much worse. The > mess was 10 times worse! This was because there was one nurse for 10 > patients, instead of two nurses for one patient. The thing I learned > though, after spending about 100 days total in the hospital by her > side, is that the good nurses and CNA'S are really used to this job, > and make it look easy. It is not your husbands fault he has a sick > liver. Disease happens. You can eat all healthy, never drink > alcohol, or smoke , and still die of a disease. Alcoholism is a > disease. In the future, you should put a well written sign on his > room door with exactly what you said...( SEDATED Hepatic > Encephalopathy Patient with STRONG > LAXATIVE) No one else will, and the funny thing is that each > nursing shift will think that the one before them did it!! LOL > > For those people who blame an alcoholic like me for my disease, I > say screw them, they will get to spend time on a potty chair waiting > for some one to come clean thier butt too!! Love, Bobby > > PS, a toast to this group with my lactulose /and root beer cocktail > on ice... CHEERS!! > > ________________________________ > From: f_fwb <no_reply > > To: livercirrhosissupport > Sent: Wednesday, August 17, 2011 11:24 PM > Subject: Re: Questions and answers > > > Thanks to all who offered support and advice. > I came home from the hospital tonight to try to get some sleep, as I > took hubby to the ER after reading suggestion it might be necessary. > Good thing I did, he was experiencing hepatic encephalopathy. > He was admitted, and given Lactulose. Today, they increased the > dosage, as there was hardly any improvement on the low doses. It was > explained to me that they start low and increase dosage as > necessary, so as not to swing the balance too far in the other > direction. > I have had lots of talks with doctors and nurses, and since the > kidneys are not affected, he has a good chance of staying at the > level he is now, with the medications. No talk yet of stomach > drainage, other than it may be in the future if the fluid does not > lessen with the Lactulose. > Now, I am happy as can be with this, but have to let all my > frustrations out. > They give him a strong laxative and a sedative at the same time! I > asked how that could possibly work the best, and they said if he > soils the bed, they'll change it. He did, they did. > To prevent this in the future, they suggested we ring BEFORE it is > necessary. Most times I have to go find a nurse, as the buzzer is > seldom answered. > I sugested they make a note for his room buzzer, SEDATED Hepatic > Encephalopathy Patient with STRONG LAXATIVE Reflexes! > I am beginning to feel as if they have no sympathy for a person they > feel put themselves in their position.... > Thanks for all the support, and the soapbox. > Fran > Now for a little humor in all this mix...I asked for a lesson in how > to best manage the male urinal bottle. With IV's connected to IV's, > his output was massive. I wanted to know if it was best for him to > lie flat on his back, etc. > Nurse Lesson Giver said no, with the head elevated, and she > proceeded to demonstrate. I gave hubby the OK the unrinal was in the > correct position, and he released the flow. Nothing. I said can't > you go? He said I am going, in fact, I am through. There was nothing > in the urinal, but there was plenty under him and on his gown! > So much for that lesson.... > > > > > > Dear Fran, Hello, welcome to this group. My name is Bobby, and I > help out by being a moderator here. I am not a doctor, the things I > know come from taking care of my dearest friend Ardis who died of > liver disease 5 years ago this month, and then I was diagnosed with > the exact same thing a short while after her death. Both if us were > drinkers, but after she died, I quit for good, and have been sober > and a member of AA since. > > > > > > Let me ask this, what exactly did your husband get diagnosed with? > > > > Swelling in the feet and belly is a sign of chronic end stage > liver disease, also called cirrhosis of the liver, but the slow > speech and mental status changes are considered by many to be a > medical emergency situation. There is a medicine which helps clear > toxins that the sick liver cannot clear, but it doesnt sound as > though your husband is taking this. It is called Lactulose. If he > seems slurred speech or like he is having dementia, he should really > be seen asap. Some folks would actually call 911,... I know I did > when Ardis had these symptoms. Once I found her sitting in her > bathtub dressed only in a t shirt, and she couldnt get out, so she > went in the ambulance, and they got her squared away in a few > days... The condition she had is called hepatic encephalopathy. I > also have this as well as several of us, and keep in under control > by taking lactulose every day. Write back, and let us know how it > goes, and good luck. Love, Bobby > > > >  > > > > > > ________________________________ > > From: f_fwb <no_reply > > > To: livercirrhosissupport > > Sent: Friday, August 12, 2011 10:40 PM > > Subject: Questions > > > > > >  > > Hello to all. I have questions I can't find answers to by reading > about cirrhosis on the Internet. My active, self-employed 72 yr old > husband was diagnosed just over a year ago, but was not told to come > back for regular checkups, etc. Neither the primary doctor or the > gastroenterogist seemed willing to give us the time to ask. We have > an appointment with a liver specialist on Aug 22, but I am concerned > my husband will get worse before then, if I don't get answers to > something I may need to know before then. > > He has appeared to have no symptoms, until recently when I noticed > he seemed to pay more attention to something in the room than his > dinner plate. He started tiring easily, and his nights of insomnia > suddenly went from 1 every 3 months to 2-3 per week. The part that > started my worrying me was his feet started swelling about a month > ago, then I realized his stomach had been gradually swelling for > longer than that, and we just thought he was gaining weight. Now, he > has no naval indention, and he looks like he is 9 months pregnant. > Two weeks ago, he started walking and talking as if in slow motion, > and he has a different look in his eyes. He has trouble focusing > even with his glasses, but the look in his eyes is one I can't > describe, it is as if he is drugged. He had not changed or added > medication up to this point. > > Is any of this familar? Is it normal? > > That far-a-way look in his eyes concerns me that I should consider > not waiting until the 22nd, but seek medical attention by taking him > to an ER if he gets worse. The primary doctor did not give his eyes > any attention when I pointed this out to him this past Monday. He > was seeing the doctor for what was diagnosed as bursitis of the > elbow, it was drained, and had no infection. He had not injured his > elbow, so could it be related to the other swellings? > > Thank you for any advice, we have basically lived a normal life in > the year since he was diagnosed, and were not prepared for this > sudden turn of events. > > > > Fran > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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