Guest guest Posted September 29, 2003 Report Share Posted September 29, 2003 Thanks for your honest answer. My daughter has been followed at Children's Memorial Hospital and their team of doctors at the MM clinic since she was born. The problem now is that they never told us that this would be a deteriorating condition all through adulthood. She was perfect for so long until her growth spurt and now after going for a second opinion we learn that there could be potentially more surgeries and losses of function. We were told for so many years that she will just have to be watched and if there was a change that she would have surgery - not that this could repeat over and over. I wish we had been told this from the beginning so that we could have prepared her and ourselves. She is a bright young adult now and we just want to do what is best for her. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2004 Report Share Posted September 20, 2004 Thank you for your input. As I said, I really don't have a tsc doctor. I have a neurologist that checks every 6 months to make sure muscles, etc. are okay. The doctor that did the emg is not my regular doctor, same office, and I have not been back to talk to my doctor. None of the doctors in this area are familiar with tcs My surgeon was a pediatric neurosurgeon, and refused to see me after I retethered. Another dr in his office did say he would never open me up again, too much risk. If I had the financial resources, I would go out of the area. Right now I cannot do that. I know my pain could be much worse, it is just that now both sides are bad and that is kind of hard to handle at times. Thanks again for your input, I think I have to do more research as I have no doctor to turn to with questions or treatments. > >Reply-To: tetheredspinalcord >To: tetheredspinalcord >Subject: Re: Question >Date: Sun, 19 Sep 2004 15:19:45 -0000 > >I had a similar experience, I always had pain symptoms on my right >leg and one day out of no where I experienced pain symptoms to my >left. I did all the investigations that you did and all it pointed >to was retethering. > >As far as the EMG is considered did the neurologist or specialist >indicate if the damage was peripheral or central? Meaning did he >find that the damage was linked to a lumbar nerve root in you back >or was the damage occuring in your leg itself? > >If the damage is peripheral in nature that in may have nothing to do >with your retethering, if it is central in nature then it is >probably linked to a progressive issue in your spine. > >Regardless of the situation you should consult with physicians who >are more experienced with TCS. You are unlikely to have any new MRI >findings after surgery that indicate radical change because almost >all post-operative MRIs looked tethered both because the >magnification isn't good enough and because the nerves almost always >anatomically tether to the scar tissue/healing that the incision >left behind. > >You may want to consider seeing the original neurosurgeon and asking >him what his thoughts are on a second procedure, you may also want >to try different meds. I take Neurontin, Nortryptaline, and Ultram >in varying doses to get maximum pain relief. > > > > Hello all, I am baffled and have no where to turn with questions. >I have no > > doctor other than pain management, and he is not very >informative. I > > retethered after one surgery, all of my pain has always been in >the right > > leg. I recently had an MRI, nothing has changed. I had an emg a >few weeks > > ago (I guess my pain dr didn't believe I was in pain) - nothing >new I have > > been dealing with that all my life. He checked a nerve in my LEFT >leg and I > > hit the ceiling. Every since then I have had pain in that leg, >just what I > > need. He said there is new damage in that leg. Any idea why that >would > > happen? Could it be because I always sleep on that side? or at >least did. > > I now cannot sleep at all unless I am in a reclining chair. As I >said I > > have no doctor that is really interested and I don't have the >money to > > travel for other opinions. Any input would be appreciated. I >really don't > > know where to turn, I am tired of taking pain medication but have >no other > > options right now. > > > > _________________________________________________________________ > > Get ready for school! Find articles, homework help and more in the >Back to > > School Guide! http://special.msn.com/network/04backtoschool.armx > _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2012 Report Share Posted January 12, 2012 any one ever hear of kombucha tea...I had a episode of gout and this is a holistic cure,I am wondering if it will hurt my liver more. Annie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 I had gotten a Med Alert necklace that says my name, HepC and Cirrhosis on it. I'm hoping that medics would know most symptoms regarding the liver. > > I was just thinking, and I wanted to ask you guys your take on it. > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not listen to > me, when I try to make him aware of possible serious conditions that > may be secondary to cirrhosis. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 I absolutely agree with you. Let me tell you what happened with my husband's first experience with elevated ammonia. I called the paramedics. They came, and I explained hepatic encephalopathy to them; all about how the ammonia gets into the blood and that the ammonia level needs to be lowered. They took him to the hospital and we stayed there two days. Once his ammonia level was better, they put him on 3 doses of lactulose per day, which sometimes would have to be adjusted to four. (I, as his caregiver, would be the best judge of that.) Everything was fine, for about a week. Then he woke up loopy again one morning. I knew the drill, and called the paramedics. The same 2 guys showed up and told me they can't keep responding to repeat calls. They said the hospital would probably urge me to put him in a nursing home. I told them I would deal with the hospital when we got there. They asked him if he needed to go to the hospital and he told them he was fine. They said they couldn't take him against his will. I again explained that he was suffering from elevated ammonia and if the ammonia level was not brought down he would lapse into a coma and die. To my horror, the ambulance guy answered " maybe he wants to just lie here and let nature take it's course. "  I tried to give him his lactulose but he turned his head away. They had a cop with them and asked him for his opinion. He told them, " He refused his meds. I would take him to the hospital. "  My advice to you: Make sure you have a trusted power of attorney who can make decisions for you when you are unable to do so for yourself. (I got power of attorney as soon as his ammonia level was back to normal) And take your lactulose. I know it tastes terrible but it will keep your ammonia level where it should be, at least close anyway. Happy ending to my story. My husband received his new liver May 26, 2010. I have written a book about our whole experience with liver disease. It's called " The Mustard Seed " and it's available on Amazon.com     Jackie Ellermann ________________________________ From: rosehipc <no_reply > To: livercirrhosissupport Sent: Tuesday, January 17, 2012 4:31 AM Subject: Re: question  I had gotten a Med Alert necklace that says my name, HepC and Cirrhosis on it. I'm hoping that medics would know most symptoms regarding the liver. > > I was just thinking, and I wanted to ask you guys your take on it. > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not listen to > me, when I try to make him aware of possible serious conditions that > may be secondary to cirrhosis. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 jackie, here is where i am confused i have asked my dr for my ammonia level several times and mhe keeps saying that is not a routine blood test for liver patients.because i have horrible bouts with being loopy and confused. any thoughts would be appreciated. bev,tx ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, January 17, 2012 9:29 AM Subject: Re: Re: question  I absolutely agree with you. Let me tell you what happened with my husband's first experience with elevated ammonia. I called the paramedics. They came, and I explained hepatic encephalopathy to them; all about how the ammonia gets into the blood and that the ammonia level needs to be lowered. They took him to the hospital and we stayed there two days. Once his ammonia level was better, they put him on 3 doses of lactulose per day, which sometimes would have to be adjusted to four. (I, as his caregiver, would be the best judge of that.) Everything was fine, for about a week. Then he woke up loopy again one morning. I knew the drill, and called the paramedics. The same 2 guys showed up and told me they can't keep responding to repeat calls. They said the hospital would probably urge me to put him in a nursing home. I told them I would deal with the hospital when we got there. They asked him if he needed to go to the hospital and he told them he was fine. They said they couldn't take him against his will. I again explained that he was suffering from elevated ammonia and if the ammonia level was not brought down he would lapse into a coma and die. To my horror, the ambulance guy answered " maybe he wants to just lie here and let nature take it's course. "  I tried to give him his lactulose but he turned his head away. They had a cop with them and asked him for his opinion. He told them, " He refused his meds. I would take him to the hospital. "  My advice to you: Make sure you have a trusted power of attorney who can make decisions for you when you are unable to do so for yourself. (I got power of attorney as soon as his ammonia level was back to normal) And take your lactulose. I know it tastes terrible but it will keep your ammonia level where it should be, at least close anyway. Happy ending to my story. My husband received his new liver May 26, 2010. I have written a book about our whole experience with liver disease. It's called " The Mustard Seed " and it's available on Amazon.com     Jackie Ellermann ________________________________ From: rosehipc <no_reply > To: livercirrhosissupport Sent: Tuesday, January 17, 2012 4:31 AM Subject: Re: question  I had gotten a Med Alert necklace that says my name, HepC and Cirrhosis on it. I'm hoping that medics would know most symptoms regarding the liver. > > I was just thinking, and I wanted to ask you guys your take on it. > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not listen to > me, when I try to make him aware of possible serious conditions that > may be secondary to cirrhosis. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 Very fortunately, I also had a Power of Attorney drawn up and my son knows where the copy is. He's the one with the power. LOL Also, in my case, I have signed over what little I have to my son already. In other words, he owns the RV that I live in and we have a bank account in both names. Truthfully, I have thought about a Lifeline for the just in case. Right now my great-niece is here and plans to stay for a while and get her adult life going. My son is back close also; but, he got a job and wouldn't be around during the day. I think I'm having a problem with the lactulose! The only yuk to me is the sweetness. However, it has begun to upset my tummy as well. AND it sure doesn't work for my bowels. I'm getting the idea that I would near have to drink half the bottle. I know that I have to change the way that I take it. I'll bet one should have it after eating. On an empty tummy is not good. ________________________________  I absolutely agree with you. Let me tell you what happened with my husband's first experience with elevated ammonia. I called the paramedics. They came, and I explained hepatic encephalopathy to them; all about how the ammonia gets into the blood and that the ammonia level needs to be lowered. They took him to the hospital and we stayed there two days. Once his ammonia level was better, they put him on 3 doses of lactulose per day, which sometimes would have to be adjusted to four. (I, as his caregiver, would be the best judge of that.) Everything was fine, for about a week. Then he woke up loopy again one morning. I knew the drill, and called the paramedics. The same 2 guys showed up and told me they can't keep responding to repeat calls. They said the hospital would probably urge me to put him in a nursing home. I told them I would deal with the hospital when we got there. They asked him if he needed to go to the hospital and he told them he was fine. They said they couldn't take him against his will. I again explained that he was suffering from elevated ammonia and if the ammonia level was not brought down he would lapse into a coma and die. To my horror, the ambulance guy answered " maybe he wants to just lie here and let nature take it's course. "  I tried to give him his lactulose but he turned his head away. They had a cop with them and asked him for his opinion. He told them, " He refused his meds. I would take him to the hospital. "  My advice to you: Make sure you have a trusted power of attorney who can make decisions for you when you are unable to do so for yourself. (I got power of attorney as soon as his ammonia level was back to normal) And take your lactulose. I know it tastes terrible but it will keep your ammonia level where it should be, at least close anyway. Happy ending to my story. My husband received his new liver May 26, 2010. I have written a book about our whole experience with liver disease. It's called " The Mustard Seed " and it's available on Amazon.com     Jackie Ellermann ________________________________ From: rosehipc <no_reply > To: livercirrhosissupport Sent: Tuesday, January 17, 2012 4:31 AM Subject: Re: question  I had gotten a Med Alert necklace that says my name, HepC and Cirrhosis on it. I'm hoping that medics would know most symptoms regarding the liver. > > I was just thinking, and I wanted to ask you guys your take on it. > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not listen to > me, when I try to make him aware of possible serious conditions that > may be secondary to cirrhosis. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2012 Report Share Posted January 17, 2012 Talk about loopy!! Just this evening, I searched and searched for the remote. Now, I live in an RV so it's not so big or didn't go down in the couch cushions. Then I had to phone my mom and first thing I asked was " what do you do when you are a brain fogged blond that lost the clicker "  Well, she howled with laughter.  When my niece came home, we began a search together. Damn thing was under my office chair!!! Now, even if you are only brain fogged, who would think to look there.   LOL A worry for me is that no one will notice me being loopy; because, I've been this way for so long. Blond jokes don't even upset me, because sometimes I could have done or said that stupid thing. ________________________________  jackie, here is where i am confused i have asked my dr for my ammonia level several times and mhe keeps saying that is not a routine blood test for liver patients.because i have horrible bouts with being loopy and confused. any thoughts would be appreciated. bev,tx ________________________________ To: " livercirrhosissupport " <livercirrhosissupport > Sent: Tuesday, January 17, 2012 9:29 AM Subject: Re: Re: question  I absolutely agree with you. Let me tell you what happened with my husband's first experience with elevated ammonia. I called the paramedics. They came, and I explained hepatic encephalopathy to them; all about how the ammonia gets into the blood and that the ammonia level needs to be lowered. They took him to the hospital and we stayed there two days. Once his ammonia level was better, they put him on 3 doses of lactulose per day, which sometimes would have to be adjusted to four. (I, as his caregiver, would be the best judge of that.) Everything was fine, for about a week. Then he woke up loopy again one morning. I knew the drill, and called the paramedics. The same 2 guys showed up and told me they can't keep responding to repeat calls. They said the hospital would probably urge me to put him in a nursing home. I told them I would deal with the hospital when we got there. They asked him if he needed to go to the hospital and he told them he was fine. They said they couldn't take him against his will. I again explained that he was suffering from elevated ammonia and if the ammonia level was not brought down he would lapse into a coma and die. To my horror, the ambulance guy answered " maybe he wants to just lie here and let nature take it's course. "  I tried to give him his lactulose but he turned his head away. They had a cop with them and asked him for his opinion. He told them, " He refused his meds. I would take him to the hospital. "  My advice to you: Make sure you have a trusted power of attorney who can make decisions for you when you are unable to do so for yourself. (I got power of attorney as soon as his ammonia level was back to normal) And take your lactulose. I know it tastes terrible but it will keep your ammonia level where it should be, at least close anyway. Happy ending to my story. My husband received his new liver May 26, 2010. I have written a book about our whole experience with liver disease. It's called " The Mustard Seed " and it's available on Amazon.com     Jackie Ellermann ________________________________ From: rosehipc <no_reply > To: livercirrhosissupport Sent: Tuesday, January 17, 2012 4:31 AM Subject: Re: question  I had gotten a Med Alert necklace that says my name, HepC and Cirrhosis on it. I'm hoping that medics would know most symptoms regarding the liver. > > I was just thinking, and I wanted to ask you guys your take on it. > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not listen to > me, when I try to make him aware of possible serious conditions that > may be secondary to cirrhosis. > > Thanks, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 Gloria......most blondes are from a bottle. Which means they are actually brunettes and redheads. I think the blonde jokes don't apply to natural blondes. Fellow blonde, Roni > Talk about loopy!! Just this evening, I searched and searched for > the remote. Now, I live in an RV so it's not so big or didn't go > down in the couch cushions. Then I had to phone my mom and first > thing I asked was " what do you do when you are a brain fogged blond > that lost the clicker " Well, she howled with laughter. When my > niece came home, we began a search together. Damn thing was under > my office chair!!! Now, even if you are only brain fogged, who > would think to look there. LOL > > A worry for me is that no one will notice me being loopy; because, > I've been this way for so long. Blond jokes don't even upset me, > because sometimes I could have done or said that stupid thing. > > ________________________________ > > > jackie, > here is where i am confused i have asked my dr for my ammonia level > several times and mhe keeps saying that is not a routine blood test > for liver patients.because i have horrible bouts with being loopy > and confused. any thoughts would be appreciated. > bev,tx > > ________________________________ > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Tuesday, January 17, 2012 9:29 AM > Subject: Re: Re: question > > > > I absolutely agree with you. Let me tell you what happened with my > husband's first experience with elevated ammonia. I called the > paramedics. They came, and I explained hepatic encephalopathy to > them; all about how the ammonia gets into the blood and that the > ammonia level needs to be lowered. They took him to the hospital > and we stayed there two days. Once his ammonia level was better, > they put him on 3 doses of lactulose per day, which sometimes would > have to be adjusted to four. (I, as his caregiver, would be the > best judge of that.) Everything was fine, for about a week. Then > he woke up loopy again one morning. I knew the drill, and called > the paramedics. The same 2 guys showed up and told me they can't > keep responding to repeat calls. They said the hospital would > probably urge me to put him in a nursing home. I told them I would > deal with the hospital when we got there. They asked him if he > needed to go to the hospital and > he told them he was fine. They said they couldn't take him against > his will. I again explained that he was suffering from elevated > ammonia and if the ammonia level was not brought down he would lapse > into a coma and die. To my horror, the ambulance guy answered > " maybe he wants to just lie here and let nature take it's course. " > I tried to give him his lactulose but he turned his head away. They > had a cop with them and asked him for his opinion. He told them, > " He refused his meds. I would take him to the hospital. " My advice > to you: Make sure you have a trusted power of attorney who can make > decisions for you when you are unable to do so for yourself. (I got > power of attorney as soon as his ammonia level was back to normal) > And take your lactulose. I know it tastes terrible but it will keep > your ammonia level where it should be, at least close anyway. Happy > ending to my story. My husband received his new liver May 26, > 2010. I > have written a book about our whole experience with liver disease. > It's called " The Mustard Seed " and it's available on Amazon.com > Jackie Ellermann > > ________________________________ > From: rosehipc <no_reply > > To: livercirrhosissupport > Sent: Tuesday, January 17, 2012 4:31 AM > Subject: Re: question > > > I had gotten a Med Alert necklace that says my name, HepC and > Cirrhosis on it. I'm hoping that medics would know most symptoms > regarding the liver. > > > > > > I was just thinking, and I wanted to ask you guys your take on it. > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > listen to > > me, when I try to make him aware of possible serious conditions that > > may be secondary to cirrhosis. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 LOL  Thanks for saying that! Actually, my hair used to be a real strawberry blond and now has become a nothing color. So most of the time I do use the bottle and I try to make the red stay in. The only thing is that I will not be gray or that beautiful white. Mine just goes to zero color. Inheritedit from a whole line of " used to be red " . LOL Besides, I know a few brunettes that are a whole lot more ditsy than I could ever be. Plus, they can not claim to be blond either. I like that - don't apply unless it comes from a bottle!!! ________________________________ Gloria......most blondes are from a bottle. Which means they are actually brunettes and redheads. I think the blonde jokes don't apply to natural blondes. Fellow blonde, Roni > Talk about loopy!! Just this evening, I searched and searched for > the remote. Now, I live in an RV so it's not so big or didn't go > down in the couch cushions. Then I had to phone my mom and first > thing I asked was " what do you do when you are a brain fogged blond > that lost the clicker "  Well, she howled with laughter. When my > niece came home, we began a search together. Damn thing was under > my office chair!!! Now, even if you are only brain fogged, who > would think to look there.  LOL > > A worry for me is that no one will notice me being loopy; because, > I've been this way for so long. Blond jokes don't even upset me, > because sometimes I could have done or said that stupid thing. > > ________________________________ > > > jackie, > here is where i am confused i have asked my dr for my ammonia level > several times and mhe keeps saying that is not a routine blood test > for liver patients.because i have horrible bouts with being loopy > and confused. any thoughts would be appreciated. > bev,tx > > ________________________________ > > To: " livercirrhosissupport " <livercirrhosissupport > > > Sent: Tuesday, January 17, 2012 9:29 AM > Subject: Re: Re: question > > > > I absolutely agree with you. Let me tell you what happened with my > husband's first experience with elevated ammonia. I called the > paramedics. They came, and I explained hepatic encephalopathy to > them; all about how the ammonia gets into the blood and that the > ammonia level needs to be lowered. They took him to the hospital > and we stayed there two days. Once his ammonia level was better, > they put him on 3 doses of lactulose per day, which sometimes would > have to be adjusted to four. (I, as his caregiver, would be the > best judge of that.) Everything was fine, for about a week. Then > he woke up loopy again one morning. I knew the drill, and called > the paramedics. The same 2 guys showed up and told me they can't > keep responding to repeat calls. They said the hospital would > probably urge me to put him in a nursing home. I told them I would > deal with the hospital when we got there. They asked him if he > needed to go to the hospital and > he told them he was fine. They said they couldn't take him against > his will. I again explained that he was suffering from elevated > ammonia and if the ammonia level was not brought down he would lapse > into a coma and die. To my horror, the ambulance guy answered > " maybe he wants to just lie here and let nature take it's course. "  > I tried to give him his lactulose but he turned his head away. They > had a cop with them and asked him for his opinion. He told them, > " He refused his meds. I would take him to the hospital. "  My advice > to you: Make sure you have a trusted power of attorney who can make > decisions for you when you are unable to do so for yourself. (I got > power of attorney as soon as his ammonia level was back to normal) > And take your lactulose. I know it tastes terrible but it will keep > your ammonia level where it should be, at least close anyway. Happy > ending to my story. My husband received his new liver May 26, > 2010. I > have written a book about our whole experience with liver disease. > It's called " The Mustard Seed " and it's available on Amazon.com   > Jackie Ellermann > > ________________________________ > From: rosehipc <no_reply > > To: livercirrhosissupport > Sent: Tuesday, January 17, 2012 4:31 AM > Subject: Re: question > > > I had gotten a Med Alert necklace that says my name, HepC and > Cirrhosis on it. I'm hoping that medics would know most symptoms > regarding the liver. > > > > > > I was just thinking, and I wanted to ask you guys your take on it. > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > listen to > > me, when I try to make him aware of possible serious conditions that > > may be secondary to cirrhosis. > > > > Thanks, > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 I'm kinda a grayish blonde myself which is basically a nothing color. I do help it out sometimes. Roni > LOL Thanks for saying that! Actually, my hair used to be a real > strawberry blond and now has become a nothing color. So most of the > time I do use the bottle and I try to make the red stay in. The > only thing is that I will not be gray or that beautiful white. Mine > just goes to zero color. Inheritedit from a whole line of " used to > be red " . LOL > > Besides, I know a few brunettes that are a whole lot more ditsy than > I could ever be. Plus, they can not claim to be blond either. > > I like that - don't apply unless it comes from a bottle!!! > > ________________________________ > Gloria......most blondes are from a bottle. Which means they are > actually brunettes and redheads. I think the blonde jokes don't apply > to natural blondes. > > Fellow blonde, > Roni > > > > > Talk about loopy!! Just this evening, I searched and searched for > > the remote. Now, I live in an RV so it's not so big or didn't go > > down in the couch cushions. Then I had to phone my mom and first > > thing I asked was " what do you do when you are a brain fogged blond > > that lost the clicker " Well, she howled with laughter. When my > > niece came home, we began a search together. Damn thing was under > > my office chair!!! Now, even if you are only brain fogged, who > > would think to look there. LOL > > > > A worry for me is that no one will notice me being loopy; because, > > I've been this way for so long. Blond jokes don't even upset me, > > because sometimes I could have done or said that stupid thing. > > > > ________________________________ > > > > > > jackie, > > here is where i am confused i have asked my dr for my ammonia level > > several times and mhe keeps saying that is not a routine blood test > > for liver patients.because i have horrible bouts with being loopy > > and confused. any thoughts would be appreciated. > > bev,tx > > > > ________________________________ > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Sent: Tuesday, January 17, 2012 9:29 AM > > Subject: Re: Re: question > > > > > > > > I absolutely agree with you. Let me tell you what happened with my > > husband's first experience with elevated ammonia. I called the > > paramedics. They came, and I explained hepatic encephalopathy to > > them; all about how the ammonia gets into the blood and that the > > ammonia level needs to be lowered. They took him to the hospital > > and we stayed there two days. Once his ammonia level was better, > > they put him on 3 doses of lactulose per day, which sometimes would > > have to be adjusted to four. (I, as his caregiver, would be the > > best judge of that.) Everything was fine, for about a week. Then > > he woke up loopy again one morning. I knew the drill, and called > > the paramedics. The same 2 guys showed up and told me they can't > > keep responding to repeat calls. They said the hospital would > > probably urge me to put him in a nursing home. I told them I would > > deal with the hospital when we got there. They asked him if he > > needed to go to the hospital and > > he told them he was fine. They said they couldn't take him against > > his will. I again explained that he was suffering from elevated > > ammonia and if the ammonia level was not brought down he would lapse > > into a coma and die. To my horror, the ambulance guy answered > > " maybe he wants to just lie here and let nature take it's course. " > > I tried to give him his lactulose but he turned his head away. They > > had a cop with them and asked him for his opinion. He told them, > > " He refused his meds. I would take him to the hospital. " My advice > > to you: Make sure you have a trusted power of attorney who can make > > decisions for you when you are unable to do so for yourself. (I got > > power of attorney as soon as his ammonia level was back to normal) > > And take your lactulose. I know it tastes terrible but it will keep > > your ammonia level where it should be, at least close anyway. Happy > > ending to my story. My husband received his new liver May 26, > > 2010. I > > have written a book about our whole experience with liver disease. > > It's called " The Mustard Seed " and it's available on Amazon.com > > Jackie Ellermann > > > > ________________________________ > > From: rosehipc <no_reply > > > To: livercirrhosissupport > > Sent: Tuesday, January 17, 2012 4:31 AM > > Subject: Re: question > > > > > > I had gotten a Med Alert necklace that says my name, HepC and > > Cirrhosis on it. I'm hoping that medics would know most symptoms > > regarding the liver. > > > > > > > > > > I was just thinking, and I wanted to ask you guys your take on it. > > > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > > listen to > > > me, when I try to make him aware of possible serious conditions > that > > > may be secondary to cirrhosis. > > > > > > Thanks, > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 You know, I'm definitely not a vain person to any degree; but, I would color my hair. These last couple of weeks particularly, I can't see any reason to even bother getting changed unless I'm going to town. Now that I have let the hose to the RV freeze, I can't even wash my hair never mind the shower. This cold is not a regular winter thing around here. Usually, it stays up on the mountain for the skiers. But, the cold seems to have set in. ________________________________ I'm kinda a grayish blonde myself which is basically a nothing color.  I do help it out sometimes. Roni > LOL Thanks for saying that! Actually, my hair used to be a real > strawberry blond and now has become a nothing color. So most of the > time I do use the bottle and I try to make the red stay in. The > only thing is that I will not be gray or that beautiful white. Mine > just goes to zero color. Inheritedit from a whole line of " used to > be red " . LOL > > Besides, I know a few brunettes that are a whole lot more ditsy than > I could ever be. Plus, they can not claim to be blond either. > > I like that - don't apply unless it comes from a bottle!!! > > ________________________________ > Gloria......most blondes are from a bottle. Which means they are > actually brunettes and redheads. I think the blonde jokes don't apply > to natural blondes. > > Fellow blonde, > Roni > > > > > Talk about loopy!! Just this evening, I searched and searched for > > the remote. Now, I live in an RV so it's not so big or didn't go > > down in the couch cushions. Then I had to phone my mom and first > > thing I asked was " what do you do when you are a brain fogged blond > > that lost the clicker "  Well, she howled with laughter. When my > > niece came home, we began a search together. Damn thing was under > > my office chair!!! Now, even if you are only brain fogged, who > > would think to look there.  LOL > > > > A worry for me is that no one will notice me being loopy; because, > > I've been this way for so long. Blond jokes don't even upset me, > > because sometimes I could have done or said that stupid thing. > > > > ________________________________ > > > > > > jackie, > > here is where i am confused i have asked my dr for my ammonia level > > several times and mhe keeps saying that is not a routine blood test > > for liver patients.because i have horrible bouts with being loopy > > and confused. any thoughts would be appreciated. > > bev,tx > > > > ________________________________ > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Sent: Tuesday, January 17, 2012 9:29 AM > > Subject: Re: Re: question > > > > > > > > I absolutely agree with you. Let me tell you what happened with my > > husband's first experience with elevated ammonia. I called the > > paramedics. They came, and I explained hepatic encephalopathy to > > them; all about how the ammonia gets into the blood and that the > > ammonia level needs to be lowered. They took him to the hospital > > and we stayed there two days. Once his ammonia level was better, > > they put him on 3 doses of lactulose per day, which sometimes would > > have to be adjusted to four. (I, as his caregiver, would be the > > best judge of that.) Everything was fine, for about a week. Then > > he woke up loopy again one morning. I knew the drill, and called > > the paramedics. The same 2 guys showed up and told me they can't > > keep responding to repeat calls. They said the hospital would > > probably urge me to put him in a nursing home. I told them I would > > deal with the hospital when we got there. They asked him if he > > needed to go to the hospital and > > he told them he was fine. They said they couldn't take him against > > his will. I again explained that he was suffering from elevated > > ammonia and if the ammonia level was not brought down he would lapse > > into a coma and die. To my horror, the ambulance guy answered > > " maybe he wants to just lie here and let nature take it's course. " > > I tried to give him his lactulose but he turned his head away. They > > had a cop with them and asked him for his opinion. He told them, > > " He refused his meds. I would take him to the hospital. "  My advice > > to you: Make sure you have a trusted power of attorney who can make > > decisions for you when you are unable to do so for yourself. (I got > > power of attorney as soon as his ammonia level was back to normal) > > And take your lactulose. I know it tastes terrible but it will keep > > your ammonia level where it should be, at least close anyway. Happy > > ending to my story. My husband received his new liver May 26, > > 2010. I > > have written a book about our whole experience with liver disease. > > It's called " The Mustard Seed " and it's available on Amazon.com > > Jackie Ellermann > > > > ________________________________ > > From: rosehipc <no_reply > > > To: livercirrhosissupport > > Sent: Tuesday, January 17, 2012 4:31 AM > > Subject: Re: question > > > > > > I had gotten a Med Alert necklace that says my name, HepC and > > Cirrhosis on it. I'm hoping that medics would know most symptoms > > regarding the liver. > > > > > > > > > > I was just thinking, and I wanted to ask you guys your take on it. > > > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > > listen to > > > me, when I try to make him aware of possible serious conditions > that > > > may be secondary to cirrhosis. > > > > > > Thanks, > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2012 Report Share Posted January 18, 2012 It's ok to be loop with this disease- just know it is the amonia and keep on keepin' on SUE To: livercirrhosissupport Sent: Wednesday, January 18, 2012 2:16 PM Subject: Re: Re: question I'm kinda a grayish blonde myself which is basically a nothing color.  I do help it out sometimes. Roni > LOL Thanks for saying that! Actually, my hair used to be a real > strawberry blond and now has become a nothing color. So most of the > time I do use the bottle and I try to make the red stay in. The > only thing is that I will not be gray or that beautiful white. Mine > just goes to zero color. Inheritedit from a whole line of " used to > be red " . LOL > > Besides, I know a few brunettes that are a whole lot more ditsy than > I could ever be. Plus, they can not claim to be blond either. > > I like that - don't apply unless it comes from a bottle!!! > > ________________________________ > Gloria......most blondes are from a bottle. Which means they are > actually brunettes and redheads. I think the blonde jokes don't apply > to natural blondes. > > Fellow blonde, > Roni > > > > > Talk about loopy!! Just this evening, I searched and searched for > > the remote. Now, I live in an RV so it's not so big or didn't go > > down in the couch cushions. Then I had to phone my mom and first > > thing I asked was " what do you do when you are a brain fogged blond > > that lost the clicker "  Well, she howled with laughter. When my > > niece came home, we began a search together. Damn thing was under > > my office chair!!! Now, even if you are only brain fogged, who > > would think to look there.  LOL > > > > A worry for me is that no one will notice me being loopy; because, > > I've been this way for so long. Blond jokes don't even upset me, > > because sometimes I could have done or said that stupid thing. > > > > ________________________________ > > > > > > jackie, > > here is where i am confused i have asked my dr for my ammonia level > > several times and mhe keeps saying that is not a routine blood test > > for liver patients.because i have horrible bouts with being loopy > > and confused. any thoughts would be appreciated. > > bev,tx > > > > ________________________________ > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > Sent: Tuesday, January 17, 2012 9:29 AM > > Subject: Re: Re: question > > > > > > > > I absolutely agree with you. Let me tell you what happened with my > > husband's first experience with elevated ammonia. I called the > > paramedics. They came, and I explained hepatic encephalopathy to > > them; all about how the ammonia gets into the blood and that the > > ammonia level needs to be lowered. They took him to the hospital > > and we stayed there two days. Once his ammonia level was better, > > they put him on 3 doses of lactulose per day, which sometimes would > > have to be adjusted to four. (I, as his caregiver, would be the > > best judge of that.) Everything was fine, for about a week. Then > > he woke up loopy again one morning. I knew the drill, and called > > the paramedics. The same 2 guys showed up and told me they can't > > keep responding to repeat calls. They said the hospital would > > probably urge me to put him in a nursing home. I told them I would > > deal with the hospital when we got there. They asked him if he > > needed to go to the hospital and > > he told them he was fine. They said they couldn't take him against > > his will. I again explained that he was suffering from elevated > > ammonia and if the ammonia level was not brought down he would lapse > > into a coma and die. To my horror, the ambulance guy answered > > " maybe he wants to just lie here and let nature take it's course. " > > I tried to give him his lactulose but he turned his head away. They > > had a cop with them and asked him for his opinion. He told them, > > " He refused his meds. I would take him to the hospital. "  My advice > > to you: Make sure you have a trusted power of attorney who can make > > decisions for you when you are unable to do so for yourself. (I got > > power of attorney as soon as his ammonia level was back to normal) > > And take your lactulose. I know it tastes terrible but it will keep > > your ammonia level where it should be, at least close anyway. Happy > > ending to my story. My husband received his new liver May 26, > > 2010. I > > have written a book about our whole experience with liver disease. > > It's called " The Mustard Seed " and it's available on Amazon.com > > Jackie Ellermann > > > > ________________________________ > > From: rosehipc <no_reply > > > To: livercirrhosissupport > > Sent: Tuesday, January 17, 2012 4:31 AM > > Subject: Re: question > > > > > > I had gotten a Med Alert necklace that says my name, HepC and > > Cirrhosis on it. I'm hoping that medics would know most symptoms > > regarding the liver. > > > > > > > > > > I was just thinking, and I wanted to ask you guys your take on it. > > > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > > listen to > > > me, when I try to make him aware of possible serious conditions > that > > > may be secondary to cirrhosis. > > > > > > Thanks, > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2012 Report Share Posted January 19, 2012 The weather has definitely been strange. It's been really warm here in Oklahoma this winter. Last summer was the worst I can ever remember and I've lived here since I was a child. I'm now 50. Temperatures in the 3 digits for days and days on end. It was miserable. Roni > You know, I'm definitely not a vain person to any degree; but, I > would color my hair. These last couple of weeks particularly, I > can't see any reason to even bother getting changed unless I'm going > to town. Now that I have let the hose to the RV freeze, I can't > even wash my hair never mind the shower. This cold is not a regular > winter thing around here. Usually, it stays up on the mountain for > the skiers. But, the cold seems to have set in. > > ________________________________ > > I'm kinda a grayish blonde myself which is basically a nothing > color. I do help it out sometimes. > > Roni > > > > > LOL Thanks for saying that! Actually, my hair used to be a real > > strawberry blond and now has become a nothing color. So most of the > > time I do use the bottle and I try to make the red stay in. The > > only thing is that I will not be gray or that beautiful white. Mine > > just goes to zero color. Inheritedit from a whole line of " used to > > be red " . LOL > > > > Besides, I know a few brunettes that are a whole lot more ditsy than > > I could ever be. Plus, they can not claim to be blond either. > > > > I like that - don't apply unless it comes from a bottle!!! > > > > ________________________________ > > Gloria......most blondes are from a bottle. Which means they are > > actually brunettes and redheads. I think the blonde jokes don't > apply > > to natural blondes. > > > > Fellow blonde, > > Roni > > > > > > > > > Talk about loopy!! Just this evening, I searched and searched for > > > the remote. Now, I live in an RV so it's not so big or didn't go > > > down in the couch cushions. Then I had to phone my mom and first > > > thing I asked was " what do you do when you are a brain fogged > blond > > > that lost the clicker " Well, she howled with laughter. When my > > > niece came home, we began a search together. Damn thing was under > > > my office chair!!! Now, even if you are only brain fogged, who > > > would think to look there. LOL > > > > > > A worry for me is that no one will notice me being loopy; because, > > > I've been this way for so long. Blond jokes don't even upset me, > > > because sometimes I could have done or said that stupid thing. > > > > > > ________________________________ > > > > > > > > > jackie, > > > here is where i am confused i have asked my dr for my ammonia > level > > > several times and mhe keeps saying that is not a routine blood > test > > > for liver patients.because i have horrible bouts with being loopy > > > and confused. any thoughts would be appreciated. > > > bev,tx > > > > > > ________________________________ > > > > > > To: " livercirrhosissupport " <livercirrhosissupport > > > > > > > Sent: Tuesday, January 17, 2012 9:29 AM > > > Subject: Re: Re: question > > > > > > > > > > > > I absolutely agree with you. Let me tell you what happened with > my > > > husband's first experience with elevated ammonia. I called the > > > paramedics. They came, and I explained hepatic encephalopathy to > > > them; all about how the ammonia gets into the blood and that the > > > ammonia level needs to be lowered. They took him to the hospital > > > and we stayed there two days. Once his ammonia level was better, > > > they put him on 3 doses of lactulose per day, which sometimes > would > > > have to be adjusted to four. (I, as his caregiver, would be the > > > best judge of that.) Everything was fine, for about a week. Then > > > he woke up loopy again one morning. I knew the drill, and called > > > the paramedics. The same 2 guys showed up and told me they can't > > > keep responding to repeat calls. They said the hospital would > > > probably urge me to put him in a nursing home. I told them I > would > > > deal with the hospital when we got there. They asked him if he > > > needed to go to the hospital and > > > he told them he was fine. They said they couldn't take him > against > > > his will. I again explained that he was suffering from elevated > > > ammonia and if the ammonia level was not brought down he would > lapse > > > into a coma and die. To my horror, the ambulance guy answered > > > " maybe he wants to just lie here and let nature take it's course. " > > > I tried to give him his lactulose but he turned his head away. > They > > > had a cop with them and asked him for his opinion. He told them, > > > " He refused his meds. I would take him to the hospital. " My > advice > > > to you: Make sure you have a trusted power of attorney who can > make > > > decisions for you when you are unable to do so for yourself. (I > got > > > power of attorney as soon as his ammonia level was back to normal) > > > And take your lactulose. I know it tastes terrible but it will > keep > > > your ammonia level where it should be, at least close anyway. > Happy > > > ending to my story. My husband received his new liver May 26, > > > 2010. I > > > have written a book about our whole experience with liver disease. > > > It's called " The Mustard Seed " and it's available on Amazon.com > > > Jackie Ellermann > > > > > > ________________________________ > > > From: rosehipc <no_reply > > > > To: livercirrhosissupport > > > Sent: Tuesday, January 17, 2012 4:31 AM > > > Subject: Re: question > > > > > > > > > I had gotten a Med Alert necklace that says my name, HepC and > > > Cirrhosis on it. I'm hoping that medics would know most symptoms > > > regarding the liver. > > > > > > > > > > > > > > I was just thinking, and I wanted to ask you guys your take on > it. > > > > > > > > WOULD IT BE GOOD TO GET A MEDI-ALERT BRACELET, AND ENGRAVE > > > > DECOMPENSATED CIRRHOSIS-ENCEPHALAPY (SP)? My husand will not > > > listen to > > > > me, when I try to make him aware of possible serious conditions > > that > > > > may be secondary to cirrhosis. > > > > > > > > Thanks, > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.