Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 maybe he's not taking a high enough dose, or not enough times. 30 is definately way too long for him to wait, those doctors are crazy. The average in US for livertransplants is a MELD of 20. Different regions vary, here in ohio it's 22 i think, but thirty is really pushing it and I wouldn't feel comfortable doing that is my dr's told me to. I'd probably find the next transplant center and call the gastro dept to find out their average or something. A meld of 17 is too high to be left alone especially if it's climbed that high in just months. I guess my advice is not to put all your eggs in one basket, I hope none of this offends you. good luck, dont give up. > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 My MELD Turned 17 while in the hospital...just had taken oneand it was 13 so I don't know whitch listing they used for the list? They told me nothing . Lyncia My life is really different now, but it is my life. God helps us choose our path! Subject: Re: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 10:24 AM maybe he's not taking a high enough dose, or not enough times. 30 is definately way too long for him to wait, those doctors are crazy. The average in US for livertransplants is a MELD of 20. Different regions vary, here in ohio it's 22 i think, but thirty is really pushing it and I wouldn't feel comfortable doing that is my dr's told me to. I'd probably find the next transplant center and call the gastro dept to find out their average or something. A meld of 17 is too high to be left alone especially if it's climbed that high in just months. I guess my advice is not to put all your eggs in one basket, I hope none of this offends you. good luck, dont give up. > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hi Susie, I'm glad Jack is well enough to come back to his apartment. You'll have to keep a good eye on him to make sure he doesn't get too sick again. Daily monitoring will be necessary. The lactulose does a great job, but because liver disease is a progressive disease, his body's needs are constantly changing. Encephalopathy can hit suddenly. He can be okay in the morning and by noon be acting totally off the wall. If your Mom can check on him at least once daily and you do the same, you probably will be okay. Even a phone call can give you a clue regarading his metal stability. Just be very observant regarding his mood, his mental acuity and whether he is having adequate BMs every day. Mood changes, slight confusion or less than 3 BMs per day are all cause for concern. Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR SOON! This is my opinion. To tell him he has a MELD of 17 and won't even be considered for a transplant until he reaches a 30 is RIDICULOUS! Get him a referral to a transplant center for evaluation by a transplant team, NOW! There are people here with MELDs of 17 who are already ON a list! This is imperative for Jack's future well being. You and your family are doing a GREAT job of taking care of Jack. He is so very blessed to have you all. I don't remember if you said Jack was a drinker or not. If he is, he MUST be dry for at least 6 months before he will be considered for a transplant. So, if he is a drinker, be sure he knows he MUST give it up if he wants a transplant. He will need to get into AA or some other program in order to prove to the doctors that he is serious about the cessation. I am praying for you, Jack, and your Mom. I know this is a difficult journey for all of you. I am so glad that you have your sister and your Mom to help you with Jack and to lean on for support and encouragement. God bless you all! Hugs............ Diane ________________________________ To: livercirrhosissupport Sent: Saturday, February 7, 2009 9:24:06 AM Subject: My brother Jack Hi everyone. Well Jack is coming back to his apartment today. He lives a mile from me. So I'll be taking care of him now with the help of our mother. He went to the doctor yesterday and the doc said his MELD score was 17. It was 10 a few months ago. They said they won't even consider a transplant until that number reaches 30. Seems so high to me. The doctor said he'll continue to have episodes of confusion. Does anyone know how often those happen? They are pretty scary and I want to prepare myself. The last time I didn't know what it was and we got him to the hospital way too late. I want to be a bit more prepared the next time. Why doesn't the lactulose keep those from happening? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Susie, I got on the transplant list with a neld of 15 and it is now 17. Here in TX they start the transplant when you are in the mid 20's............please get another doctor. Lyncia My life is really different now, but it is my life. God helps us choose our path! Subject: Re: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 1:39 PM Hi Susie, I'm glad Jack is well enough to come back to his apartment. You'll have to keep a good eye on him to make sure he doesn't get too sick again. Daily monitoring will be necessary. The lactulose does a great job, but because liver disease is a progressive disease, his body's needs are constantly changing. Encephalopathy can hit suddenly. He can be okay in the morning and by noon be acting totally off the wall. If your Mom can check on him at least once daily and you do the same, you probably will be okay. Even a phone call can give you a clue regarading his metal stability. Just be very observant regarding his mood, his mental acuity and whether he is having adequate BMs every day. Mood changes, slight confusion or less than 3 BMs per day are all cause for concern. Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR SOON! This is my opinion. To tell him he has a MELD of 17 and won't even be considered for a transplant until he reaches a 30 is RIDICULOUS! Get him a referral to a transplant center for evaluation by a transplant team, NOW! There are people here with MELDs of 17 who are already ON a list! This is imperative for Jack's future well being. You and your family are doing a GREAT job of taking care of Jack. He is so very blessed to have you all. I don't remember if you said Jack was a drinker or not. If he is, he MUST be dry for at least 6 months before he will be considered for a transplant. So, if he is a drinker, be sure he knows he MUST give it up if he wants a transplant. He will need to get into AA or some other program in order to prove to the doctors that he is serious about the cessation. I am praying for you, Jack, and your Mom. I know this is a difficult journey for all of you. I am so glad that you have your sister and your Mom to help you with Jack and to lean on for support and encouragement. God bless you all! Hugs........ .... Diane ____________ _________ _________ __ From: " susiefoss@sbcglobal .net " <susiefoss@sbcglobal .net> To: livercirrhosissuppo rtyahoogroups (DOT) com Sent: Saturday, February 7, 2009 9:24:06 AM Subject: My brother Jack Hi everyone. Well Jack is coming back to his apartment today. He lives a mile from me. So I'll be taking care of him now with the help of our mother. He went to the doctor yesterday and the doc said his MELD score was 17. It was 10 a few months ago. They said they won't even consider a transplant until that number reaches 30. Seems so high to me. The doctor said he'll continue to have episodes of confusion. Does anyone know how often those happen? They are pretty scary and I want to prepare myself. The last time I didn't know what it was and we got him to the hospital way too late. I want to be a bit more prepared the next time. Why doesn't the lactulose keep those from happening? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 , it doesn't offend me at all. I appreciate hearing what you have to say. It makes me realize that we might be using the wrong doctor. And yes, it jumped from 10 to 17 in just a matter of months. Right now he sounds totally fine. I only hope this phase of feeling and acting fine will last. Thanks for your help....I'll make sure to investigate this further. > > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > > a mile from me. So I'll be taking care of him now with the help of our > > mother. He went to the doctor yesterday and the doc said his MELD score > > was 17. It was 10 a few months ago. They said they won't even consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I want to > > prepare myself. The last time I didn't know what it was and we got him > > to the hospital way too late. I want to be a bit more prepared the next > > time. Why doesn't the lactulose keep those from happening? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Jack will never be alone now. My Mom is moving in with him and I live a mile away. Between the two of us and coming every few weeks we plan on being with him at all times. I am taking your suggestions about new doctors very seriously. How could that doctor say 30 when that isn't correct. I have to discuss all of this with Jack today. He will be here soon and I'm going to show him your letter. Thanks! Oh and one more thing....Jack NEVER drank, smoked, did drugs...nothing. The doctors say it might be a genetic condition that caused the liver damage or chemicals in his past that he worked around. Or he has a condition called Sarcoidosis..that might have been the culprit also. Its a mystery....and unfair mystery!! > > Hi Susie, > I'm glad Jack is well enough to come back to his apartment. You'll have to keep a good eye on him to make sure he doesn't get too sick again. Daily monitoring will be necessary. The lactulose does a great job, but because liver disease is a progressive disease, his body's needs are constantly changing. Encephalopathy can hit suddenly. He can be okay in the morning and by noon be acting totally off the wall. If your Mom can check on him at least once daily and you do the same, you probably will be okay. Even a phone call can give you a clue regarading his metal stability. Just be very observant regarding his mood, his mental acuity and whether he is having adequate BMs every day. Mood changes, slight confusion or less than 3 BMs per day are all cause for concern. > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR SOON! This is my opinion. To tell him he has a MELD of 17 and won't even be considered for a transplant until he reaches a 30 is RIDICULOUS! Get him a referral to a transplant center for evaluation by a transplant team, NOW! There are people here with MELDs of 17 who are already ON a list! This is imperative for Jack's future well being. > > You and your family are doing a GREAT job of taking care of Jack. He is so very blessed to have you all. I don't remember if you said Jack was a drinker or not. If he is, he MUST be dry for at least 6 months before he will be considered for a transplant. So, if he is a drinker, be sure he knows he MUST give it up if he wants a transplant. He will need to get into AA or some other program in order to prove to the doctors that he is serious about the cessation. > > I am praying for you, Jack, and your Mom. I know this is a difficult journey for all of you. I am so glad that you have your sister and your Mom to help you with Jack and to lean on for support and encouragement. God bless you all! > > Hugs............ > Diane > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Saturday, February 7, 2009 9:24:06 AM > Subject: My brother Jack > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 It really makes me wonder when we get another person with cirrhosis and none of the dangerous behavior problems which are associated with cirrhosis. How many of those who were told they got cirrhosis because they had been drinking too much, too long, would have gotten it regardless. They don't know what caused my cirrhosis, a number of possibilties, but nothing they can point to and say this was it. I believe in my case it was a number of things coming together, from genetic predisposition, to being overweight, to untreated and then undertreated hypothyroidism and who knows what else. I just finished reading a book called Made in the USA by Billie Letts. The two main characters are an 11 year old boy and his 15 year old sister. Their mother died quite a few years ago, their dad left them with a girlfriend while he went to LV to make his fortune. Flashbacks mention his drinking a lot. When the girlfriend dies, the children take her car and get to LV only to find out that their father is in prison. When the daughter checks with someone who has a link to the prison, she finds out that her father had died of " hepititis " the same day the girlfriend died. I find it interesting that they never use the word cirrhosis in the book. The boy is a knowledge nerd, so he goes to the library and finds out how his father probably died, all the symptoms, acities, varicies, swollen legs, hepatic encephalopathy. All are mentioned, but never is it said in the book that the father died of cirrhosis of the liver, just hepatitis. Wonder why they didn't use the word cirrhosis? Jan H On Sat, Feb 7, 2009 at 3:10 PM, susiefoss@... < susiefoss@...> wrote: > > Jack will never be alone now. My Mom is moving in with him and I live > a mile away. Between the two of us and coming every few weeks > we plan on being with him at all times. I am taking your suggestions > about new doctors very seriously. How could that doctor say 30 when > that isn't correct. I have to discuss all of this with Jack today. He > will be here soon and I'm going to show him your letter. Thanks! > > Oh and one more thing....Jack NEVER drank, smoked, did > drugs...nothing. The doctors say it might be a genetic condition that > caused the liver damage or chemicals in his past that he worked > around. Or he has a condition called Sarcoidosis..that might have > been the culprit also. Its a mystery....and unfair mystery!! > > > > > > Hi Susie, > > I'm glad Jack is well enough to come back to his apartment. You'll > have to keep a good eye on him to make sure he doesn't get too sick > again. Daily monitoring will be necessary. The lactulose does a > great job, but because liver disease is a progressive disease, his > body's needs are constantly changing. Encephalopathy can hit > suddenly. He can be okay in the morning and by noon be acting > totally off the wall. If your Mom can check on him at least once > daily and you do the same, you probably will be okay. Even a phone > call can give you a clue regarading his metal stability. Just be > very observant regarding his mood, his mental acuity and whether he > is having adequate BMs every day. Mood changes, slight confusion or > less than 3 BMs per day are all cause for concern. > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR > SOON! This is my opinion. To tell him he has a MELD of 17 and won't > even be considered for a transplant until he reaches a 30 is > RIDICULOUS! Get him a referral to a transplant center for evaluation > by a transplant team, NOW! There are people here with MELDs of 17 > who are already ON a list! This is imperative for Jack's future well > being. > > > > You and your family are doing a GREAT job of taking care of Jack. > He is so very blessed to have you all. I don't remember if you said > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > months before he will be considered for a transplant. So, if he is a > drinker, be sure he knows he MUST give it up if he wants a > transplant. He will need to get into AA or some other program in > order to prove to the doctors that he is serious about the cessation. > > > > I am praying for you, Jack, and your Mom. I know this is a > difficult journey for all of you. I am so glad that you have your > sister and your Mom to help you with Jack and to lean on for support > and encouragement. God bless you all! > > > > Hugs............ > > Diane > > > > > > > > > > ________________________________ > > > > To: livercirrhosissupport <livercirrhosissupport%40yahoogroups.com> > > Sent: Saturday, February 7, 2009 9:24:06 AM > > Subject: My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Hi Susie, I agree with Diane and others here. Your brother needs to get to another doctor. Was it a transplant center doctor who told you he couldn't get on the list until he has a MELD of 30, or was it just a gastroenterologist? Only a transplant center can tell you if he can get on the list or not. He just needs to be referred by a doctor to get to the transplant center. My gastroenterologist referred me. A MELD of 30 to get on the list is RIDICULOUS! I was a MELD 14 when I started my evaluation for a transplant, and MELD 29 when I had my transplant. Penny > > Hi Susie, > I'm glad Jack is well enough to come back to his apartment. You'll have to keep a good eye on him to make sure he doesn't get too sick again. Daily monitoring will be necessary. The lactulose does a great job, but because liver disease is a progressive disease, his body's needs are constantly changing. Encephalopathy can hit suddenly. He can be okay in the morning and by noon be acting totally off the wall. If your Mom can check on him at least once daily and you do the same, you probably will be okay. Even a phone call can give you a clue regarading his metal stability. Just be very observant regarding his mood, his mental acuity and whether he is having adequate BMs every day. Mood changes, slight confusion or less than 3 BMs per day are all cause for concern. > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR SOON! This is my opinion. To tell him he has a MELD of 17 and won't even be considered for a transplant until he reaches a 30 is RIDICULOUS! Get him a referral to a transplant center for evaluation by a transplant team, NOW! There are people here with MELDs of 17 who are already ON a list! This is imperative for Jack's future well being. > > You and your family are doing a GREAT job of taking care of Jack. He is so very blessed to have you all. I don't remember if you said Jack was a drinker or not. If he is, he MUST be dry for at least 6 months before he will be considered for a transplant. So, if he is a drinker, be sure he knows he MUST give it up if he wants a transplant. He will need to get into AA or some other program in order to prove to the doctors that he is serious about the cessation. > > I am praying for you, Jack, and your Mom. I know this is a difficult journey for all of you. I am so glad that you have your sister and your Mom to help you with Jack and to lean on for support and encouragement. God bless you all! > > Hugs............ > Diane > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Saturday, February 7, 2009 9:24:06 AM > Subject: My brother Jack > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 please contact your transplant coordinator. Do not let them get away with not in informing you! love, B long life, old age, everything good-Apache prayer ________________________________ To: livercirrhosissupport Sent: Saturday, February 7, 2009 11:45:15 AM Subject: Re: Re: My brother Jack My MELD Turned 17 while in the hospital...just had taken oneand it was 13 so I don't know whitch listing they used for the list? They told me nothing . Lyncia My life is really different now, but it is my life. God helps us choose our path! From: crazygirlmcc <CrazygirlMCC@ hotmail.com> Subject: Re: My brother Jack To: livercirrhosissuppo rtyahoogroups (DOT) com Date: Saturday, February 7, 2009, 10:24 AM maybe he's not taking a high enough dose, or not enough times. 30 is definately way too long for him to wait, those doctors are crazy. The average in US for livertransplants is a MELD of 20. Different regions vary, here in ohio it's 22 i think, but thirty is really pushing it and I wouldn't feel comfortable doing that is my dr's told me to. I'd probably find the next transplant center and call the gastro dept to find out their average or something. A meld of 17 is too high to be left alone especially if it's climbed that high in just months. I guess my advice is not to put all your eggs in one basket, I hope none of this offends you. good luck, dont give up. > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Susie, Did the transplant team say they wanted to wait until his MELD is 30 to have him put on the transplant list or did his doctor say he wanted to wait until his MELD is 30 to have him evaluated for a transplant? I may be confused here. Is he actually on the transplant list at all? MaC Subject: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 7:24 AM Hi everyone. Well Jack is coming back to his apartment today. He lives a mile from me. So I'll be taking care of him now with the help of our mother. He went to the doctor yesterday and the doc said his MELD score was 17. It was 10 a few months ago. They said they won't even consider a transplant until that number reaches 30. Seems so high to me. The doctor said he'll continue to have episodes of confusion. Does anyone know how often those happen? They are pretty scary and I want to prepare myself. The last time I didn't know what it was and we got him to the hospital way too late. I want to be a bit more prepared the next time. Why doesn't the lactulose keep those from happening? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Susie, I'm sorry, I didn't mean to be offensive about whether Jack had been a drinker or not. I've just been through so much within the last two weeks and my poor old brain just can't remember everything. I'm happy Jack doesn't have that hurdle to jump. It will make it easier for him and for you and your family. I'm so glad he's coming home and that someone will be with him 24/7. You girls don't forget to take care of yourselves while taking care of Jack, okay?! I'm praying for all of you. Hugs............. Diane ________________________________ To: livercirrhosissupport Sent: Saturday, February 7, 2009 4:10:17 PM Subject: Re: My brother Jack Jack will never be alone now. My Mom is moving in with him and I live a mile away. Between the two of us and coming every few weeks we plan on being with him at all times. I am taking your suggestions about new doctors very seriously. How could that doctor say 30 when that isn't correct. I have to discuss all of this with Jack today. He will be here soon and I'm going to show him your letter. Thanks! Oh and one more thing....Jack NEVER drank, smoked, did drugs...nothing. The doctors say it might be a genetic condition that caused the liver damage or chemicals in his past that he worked around. Or he has a condition called Sarcoidosis. .that might have been the culprit also. Its a mystery....and unfair mystery!! > > Hi Susie, > I'm glad Jack is well enough to come back to his apartment. You'll have to keep a good eye on him to make sure he doesn't get too sick again. Daily monitoring will be necessary. The lactulose does a great job, but because liver disease is a progressive disease, his body's needs are constantly changing. Encephalopathy can hit suddenly. He can be okay in the morning and by noon be acting totally off the wall. If your Mom can check on him at least once daily and you do the same, you probably will be okay. Even a phone call can give you a clue regarading his metal stability. Just be very observant regarding his mood, his mental acuity and whether he is having adequate BMs every day. Mood changes, slight confusion or less than 3 BMs per day are all cause for concern. > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR SOON! This is my opinion. To tell him he has a MELD of 17 and won't even be considered for a transplant until he reaches a 30 is RIDICULOUS! Get him a referral to a transplant center for evaluation by a transplant team, NOW! There are people here with MELDs of 17 who are already ON a list! This is imperative for Jack's future well being. > > You and your family are doing a GREAT job of taking care of Jack. He is so very blessed to have you all. I don't remember if you said Jack was a drinker or not. If he is, he MUST be dry for at least 6 months before he will be considered for a transplant. So, if he is a drinker, be sure he knows he MUST give it up if he wants a transplant. He will need to get into AA or some other program in order to prove to the doctors that he is serious about the cessation. > > I am praying for you, Jack, and your Mom. I know this is a difficult journey for all of you. I am so glad that you have your sister and your Mom to help you with Jack and to lean on for support and encouragement. God bless you all! > > Hugs........ .... > Diane > > > > > ____________ _________ _________ __ > From: " susiefoss@. .. " <susiefoss@. ..> > To: livercirrhosissuppo rtyahoogroups (DOT) com > Sent: Saturday, February 7, 2009 9:24:06 AM > Subject: My brother Jack > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > a mile from me. So I'll be taking care of him now with the help of our > mother. He went to the doctor yesterday and the doc said his MELD score > was 17. It was 10 a few months ago. They said they won't even consider > a transplant until that number reaches 30. Seems so high to me. > The doctor said he'll continue to have episodes of confusion. Does > anyone know how often those happen? They are pretty scary and I want to > prepare myself. The last time I didn't know what it was and we got him > to the hospital way too late. I want to be a bit more prepared the next > time. Why doesn't the lactulose keep those from happening? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Thanks Diane, no offense taken!! Thanks...good advice about us taking care of ourselves. We were just talking about that. Its hard to balance it all, but we have to. > > > > Hi Susie, > > I'm glad Jack is well enough to come back to his apartment. You'll > have to keep a good eye on him to make sure he doesn't get too sick > again. Daily monitoring will be necessary. The lactulose does a > great job, but because liver disease is a progressive disease, his > body's needs are constantly changing. Encephalopathy can hit > suddenly. He can be okay in the morning and by noon be acting > totally off the wall. If your Mom can check on him at least once > daily and you do the same, you probably will be okay. Even a phone > call can give you a clue regarading his metal stability. Just be > very observant regarding his mood, his mental acuity and whether he > is having adequate BMs every day. Mood changes, slight confusion or > less than 3 BMs per day are all cause for concern. > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR > SOON! This is my opinion. To tell him he has a MELD of 17 and won't > even be considered for a transplant until he reaches a 30 is > RIDICULOUS! Get him a referral to a transplant center for evaluation > by a transplant team, NOW! There are people here with MELDs of 17 > who are already ON a list! This is imperative for Jack's future well > being. > > > > You and your family are doing a GREAT job of taking care of Jack. > He is so very blessed to have you all. I don't remember if you said > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > months before he will be considered for a transplant. So, if he is a > drinker, be sure he knows he MUST give it up if he wants a > transplant. He will need to get into AA or some other program in > order to prove to the doctors that he is serious about the cessation. > > > > I am praying for you, Jack, and your Mom. I know this is a > difficult journey for all of you. I am so glad that you have your > sister and your Mom to help you with Jack and to lean on for support > and encouragement. God bless you all! > > > > Hugs........ .... > > Diane > > > > > > > > > > ____________ _________ _________ __ > > From: " susiefoss@ .. " <susiefoss@ ..> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Saturday, February 7, 2009 9:24:06 AM > > Subject: My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 The doctor said he'd would start the referral process but he said it takes months to get on the list. So I guess we will be beginning all that soon...at least I hope we do. I plan on talking to the doctor about it when we see him next. He just doesn't seem in any hurry. Its frustrating. > > > > Hi Susie, > > I'm glad Jack is well enough to come back to his apartment. You'll > have to keep a good eye on him to make sure he doesn't get too sick > again. Daily monitoring will be necessary. The lactulose does a > great job, but because liver disease is a progressive disease, his > body's needs are constantly changing. Encephalopathy can hit > suddenly. He can be okay in the morning and by noon be acting > totally off the wall. If your Mom can check on him at least once > daily and you do the same, you probably will be okay. Even a phone > call can give you a clue regarading his metal stability. Just be > very observant regarding his mood, his mental acuity and whether he > is having adequate BMs every day. Mood changes, slight confusion or > less than 3 BMs per day are all cause for concern. > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR > SOON! This is my opinion. To tell him he has a MELD of 17 and won't > even be considered for a transplant until he reaches a 30 is > RIDICULOUS! Get him a referral to a transplant center for evaluation > by a transplant team, NOW! There are people here with MELDs of 17 > who are already ON a list! This is imperative for Jack's future well > being. > > > > You and your family are doing a GREAT job of taking care of Jack. > He is so very blessed to have you all. I don't remember if you said > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > months before he will be considered for a transplant. So, if he is a > drinker, be sure he knows he MUST give it up if he wants a > transplant. He will need to get into AA or some other program in > order to prove to the doctors that he is serious about the cessation. > > > > I am praying for you, Jack, and your Mom. I know this is a > difficult journey for all of you. I am so glad that you have your > sister and your Mom to help you with Jack and to lean on for support > and encouragement. God bless you all! > > > > Hugs............ > > Diane > > > > > > > > > > ________________________________ > > From: " susiefoss@ " <susiefoss@> > > To: livercirrhosissupport > > Sent: Saturday, February 7, 2009 9:24:06 AM > > Subject: My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 You're right Susie. Taking care of someone with liver disease is more like a marathon, it's gonna last for a while and you need to be careful to keep a reserve for the next leg. Sprint runners or the faint of heart won't do well in this race. I have confidence you and your family are going to be exactly what Jack needs! Hang in there and let us help when we can! Warm hugs.............. Diane ________________________________ To: livercirrhosissupport Sent: Saturday, February 7, 2009 10:07:39 PM Subject: Re: My brother Jack Thanks Diane, no offense taken!! Thanks...good advice about us taking care of ourselves. We were just talking about that. Its hard to balance it all, but we have to. > > > > Hi Susie, > > I'm glad Jack is well enough to come back to his apartment. You'll > have to keep a good eye on him to make sure he doesn't get too sick > again. Daily monitoring will be necessary. The lactulose does a > great job, but because liver disease is a progressive disease, his > body's needs are constantly changing. Encephalopathy can hit > suddenly. He can be okay in the morning and by noon be acting > totally off the wall. If your Mom can check on him at least once > daily and you do the same, you probably will be okay. Even a phone > call can give you a clue regarading his metal stability. Just be > very observant regarding his mood, his mental acuity and whether he > is having adequate BMs every day. Mood changes, slight confusion or > less than 3 BMs per day are all cause for concern. > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR > SOON! This is my opinion. To tell him he has a MELD of 17 and won't > even be considered for a transplant until he reaches a 30 is > RIDICULOUS! Get him a referral to a transplant center for evaluation > by a transplant team, NOW! There are people here with MELDs of 17 > who are already ON a list! This is imperative for Jack's future well > being. > > > > You and your family are doing a GREAT job of taking care of Jack. > He is so very blessed to have you all. I don't remember if you said > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > months before he will be considered for a transplant. So, if he is a > drinker, be sure he knows he MUST give it up if he wants a > transplant. He will need to get into AA or some other program in > order to prove to the doctors that he is serious about the cessation. > > > > I am praying for you, Jack, and your Mom. I know this is a > difficult journey for all of you. I am so glad that you have your > sister and your Mom to help you with Jack and to lean on for support > and encouragement. God bless you all! > > > > Hugs........ .... > > Diane > > > > > > > > > > ____________ _________ _________ __ > > From: " susiefoss@ .. " <susiefoss@ ..> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Saturday, February 7, 2009 9:24:06 AM > > Subject: My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 He is not on the transplant list yet. His GI after practically begging him said that they would begin the process..which he said takes months to get you on the list. He said that if and when he gets a transplant his MELD would have to be around 30. Its 17 at the moment. > > > Subject: My brother Jack > To: livercirrhosissupport > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > > a mile from me. So I'll be taking care of him now with the help of our > > mother. He went to the doctor yesterday and the doc said his MELD score > > was 17. It was 10 a few months ago. They said they won't even consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I want to > > prepare myself. The last time I didn't know what it was and we got him > > to the hospital way too late. I want to be a bit more prepared the next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 I am jumping in right here. It tood me from the first of July to early November to get placed on the list......so don't get discouraged. It is slow! But worth it. Lyncia My life is really different now, but it is my life. God helps us choose our path! Subject: Re: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 10:11 PM The doctor said he'd would start the referral process but he said it takes months to get on the list. So I guess we will be beginning all that soon...at least I hope we do. I plan on talking to the doctor about it when we see him next. He just doesn't seem in any hurry. Its frustrating. > > > > Hi Susie, > > I'm glad Jack is well enough to come back to his apartment. You'll > have to keep a good eye on him to make sure he doesn't get too sick > again. Daily monitoring will be necessary. The lactulose does a > great job, but because liver disease is a progressive disease, his > body's needs are constantly changing. Encephalopathy can hit > suddenly. He can be okay in the morning and by noon be acting > totally off the wall. If your Mom can check on him at least once > daily and you do the same, you probably will be okay. Even a phone > call can give you a clue regarading his metal stability. Just be > very observant regarding his mood, his mental acuity and whether he > is having adequate BMs every day. Mood changes, slight confusion or > less than 3 BMs per day are all cause for concern. > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER DOCTOR > SOON! This is my opinion. To tell him he has a MELD of 17 and won't > even be considered for a transplant until he reaches a 30 is > RIDICULOUS! Get him a referral to a transplant center for evaluation > by a transplant team, NOW! There are people here with MELDs of 17 > who are already ON a list! This is imperative for Jack's future well > being. > > > > You and your family are doing a GREAT job of taking care of Jack. > He is so very blessed to have you all. I don't remember if you said > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > months before he will be considered for a transplant. So, if he is a > drinker, be sure he knows he MUST give it up if he wants a > transplant. He will need to get into AA or some other program in > order to prove to the doctors that he is serious about the cessation. > > > > I am praying for you, Jack, and your Mom. I know this is a > difficult journey for all of you. I am so glad that you have your > sister and your Mom to help you with Jack and to lean on for support > and encouragement. God bless you all! > > > > Hugs........ .... > > Diane > > > > > > > > > > ____________ _________ _________ __ > > From: " susiefoss@ " <susiefoss@> > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Sent: Saturday, February 7, 2009 9:24:06 AM > > Subject: My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Agaon stepping in..........I am in the DFW area in TX and ours is around the mid 20's. It is according to which area that you are in. Lyncia Subject: Re: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 10:13 PM He is not on the transplant list yet. His GI after practically begging him said that they would begin the process..which he said takes months to get you on the list. He said that if and when he gets a transplant his MELD would have to be around 30. Its 17 at the moment. > > From: susiefoss@.. . <susiefoss@. ..> > Subject: My brother Jack > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > > a mile from me. So I'll be taking care of him now with the help of our > > mother. He went to the doctor yesterday and the doc said his MELD score > > was 17. It was 10 a few months ago. They said they won't even consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I want to > > prepare myself. The last time I didn't know what it was and we got him > > to the hospital way too late. I want to be a bit more prepared the next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 His Gastro doc probably doesn't completely understand the liver transplant process. Most of them don't. That's why I hear so many say their doctor doesn't think they are sick enough yet. Anyone with cirrhosis that presents symptoms should be evaluated for a transplant. The earlier the better. All the GI doc does is refer the patient to a transplant center for evaluation. That's it. They do not determine who or when a person gets a transplant. So disregard the MELD 30 he was talking about. The lowest number to be placed on the transplant list from what I've read is a MELD of 7. In most regions a MELD of 15 or higher are usually considered for transplantation. Although people with a MELD of lower than 15 have received transplants. Now, depending on the transplant center and appt availability it may take a few months to go through the whole evaluation process. Once it is complete the Transplant team will determine if he is eligible to be listed. Which most likely he should be. Hang in there, MaC Subject: Re: My brother Jack To: livercirrhosissupport Date: Saturday, February 7, 2009, 8:13 PM He is not on the transplant list yet. His GI after practically begging him said that they would begin the process..which he said takes months to get you on the list. He said that if and when he gets a transplant his MELD would have to be around 30. Its 17 at the moment. > > From: susiefoss@.. . <susiefoss@. ..> > Subject: My brother Jack > To: livercirrhosissuppo rtyahoogroups (DOT) com > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He lives > > a mile from me. So I'll be taking care of him now with the help of our > > mother. He went to the doctor yesterday and the doc said his MELD score > > was 17. It was 10 a few months ago. They said they won't even consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I want to > > prepare myself. The last time I didn't know what it was and we got him > > to the hospital way too late. I want to be a bit more prepared the next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 susie, i'm not sure where your doctor gets all his info from. When they found tumors on me and elevated tumor markers I was completely evaluated in one week. I was at the hospital every day that week. I was presented to the board that Friday and deferred for more diagnostic testing that they scheduled the very next week. The second Friday I was presented again and would have been listed, in my case they never got a positive cancer test result and determined the tumor markers to be elevated from my Hep C and the tumors to be regenerative nodules. Anyways, my point is that people can be listed very quickly. Someone who overdoses on pills and has acute liver failure can become status 1 with in 24 hrs. Having a good competent doctor when going through cirrhosis may determine the outcome of the battle. Don't be discouraged by what this doctor says. You don't need a referral to have a consult at a transplant center, it just might take longer to get an appointment. Sometimes it's better to take the matter into your own hands.. doctors do require a push sometimes persistance pays > > > > > > Hi Susie, > > > I'm glad Jack is well enough to come back to his apartment. > You'll > > have to keep a good eye on him to make sure he doesn't get too sick > > again. Daily monitoring will be necessary. The lactulose does a > > great job, but because liver disease is a progressive disease, his > > body's needs are constantly changing. Encephalopathy can hit > > suddenly. He can be okay in the morning and by noon be acting > > totally off the wall. If your Mom can check on him at least once > > daily and you do the same, you probably will be okay. Even a phone > > call can give you a clue regarading his metal stability. Just be > > very observant regarding his mood, his mental acuity and whether he > > is having adequate BMs every day. Mood changes, slight confusion > or > > less than 3 BMs per day are all cause for concern. > > > > > > Now, regarding his MELD and his doctor. GET HIM TO ANOTHER > DOCTOR > > SOON! This is my opinion. To tell him he has a MELD of 17 and > won't > > even be considered for a transplant until he reaches a 30 is > > RIDICULOUS! Get him a referral to a transplant center for > evaluation > > by a transplant team, NOW! There are people here with MELDs of 17 > > who are already ON a list! This is imperative for Jack's future > well > > being. > > > > > > You and your family are doing a GREAT job of taking care of > Jack. > > He is so very blessed to have you all. I don't remember if you > said > > Jack was a drinker or not. If he is, he MUST be dry for at least 6 > > months before he will be considered for a transplant. So, if he is > a > > drinker, be sure he knows he MUST give it up if he wants a > > transplant. He will need to get into AA or some other program in > > order to prove to the doctors that he is serious about the > cessation. > > > > > > I am praying for you, Jack, and your Mom. I know this is a > > difficult journey for all of you. I am so glad that you have your > > sister and your Mom to help you with Jack and to lean on for > support > > and encouragement. God bless you all! > > > > > > Hugs............ > > > Diane > > > > > > > > > > > > > > > ________________________________ > > > From: " susiefoss@ " <susiefoss@> > > > To: livercirrhosissupport > > > Sent: Saturday, February 7, 2009 9:24:06 AM > > > Subject: My brother Jack > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > > lives > > > a mile from me. So I'll be taking care of him now with the help > of > > our > > > mother. He went to the doctor yesterday and the doc said his MELD > > score > > > was 17. It was 10 a few months ago. They said they won't even > > consider > > > a transplant until that number reaches 30. Seems so high to me. > > > The doctor said he'll continue to have episodes of confusion. > Does > > > anyone know how often those happen? They are pretty scary and I > > want to > > > prepare myself. The last time I didn't know what it was and we > got > > him > > > to the hospital way too late. I want to be a bit more prepared > the > > next > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 As we've all said before, a gastroenterologist is not the one to say what his MELD score will have to be or anything about him getting a transplant. The hepatologist or one of the doctors on the transplant team know, so I wouldn't take a lot of stock in what the G.I. says. He just needs to refer him to the transplant hospital, and that's just a small amount of paper work and a letter to the transplant center. I was referred from my gastroenterologist to the transplant hospital in just a couple of days, and then received a letter from the transplant hospital about starting the evaluation. The transplant hospital does all the tests needed for the evaluation. Once you start the evaluation process at the transplant hospital, it usually does take a few months. It took me about 3-1/2 to be evaluated by the transplant hospital before getting on the list. Penny > > > > From: susiefoss@ <susiefoss@> > > Subject: My brother Jack > > To: livercirrhosissupport > > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment > today. He lives > > > > a mile from me. So I'll be taking care of him now with the help of > our > > > > mother. He went to the doctor yesterday and the doc said his MELD > score > > > > was 17. It was 10 a few months ago. They said they won't even > consider > > > > a transplant until that number reaches 30. Seems so high to me. > > > > The doctor said he'll continue to have episodes of confusion. Does > > > > anyone know how often those happen? They are pretty scary and I > want to > > > > prepare myself. The last time I didn't know what it was and we got > him > > > > to the hospital way too late. I want to be a bit more prepared the > next > > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 I was wondering penny I have been reading so much of the groups postings about implants can these really be done I was even told that peoples family and friends are offering splitting their liver to implant in a loved one is this possible? One of our dear friends phoned me last night and was so sincere when she offered me part of her liver I am so choked up over this From: preciouspenny3 Sent: Saturday, February 07, 2009 9:32 PM To: livercirrhosissupport Subject: Re: My brother Jack As we've all said before, a gastroenterologist is not the one to say what his MELD score will have to be or anything about him getting a transplant. The hepatologist or one of the doctors on the transplant team know, so I wouldn't take a lot of stock in what the G.I. says. He just needs to refer him to the transplant hospital, and that's just a small amount of paper work and a letter to the transplant center. I was referred from my gastroenterologist to the transplant hospital in just a couple of days, and then received a letter from the transplant hospital about starting the evaluation. The transplant hospital does all the tests needed for the evaluation. Once you start the evaluation process at the transplant hospital, it usually does take a few months. It took me about 3-1/2 to be evaluated by the transplant hospital before getting on the list. Penny > > > > From: susiefoss@ <susiefoss@> > > Subject: My brother Jack > > To: livercirrhosissupport > > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment > today. He lives > > > > a mile from me. So I'll be taking care of him now with the help of > our > > > > mother. He went to the doctor yesterday and the doc said his MELD > score > > > > was 17. It was 10 a few months ago. They said they won't even > consider > > > > a transplant until that number reaches 30. Seems so high to me. > > > > The doctor said he'll continue to have episodes of confusion. Does > > > > anyone know how often those happen? They are pretty scary and I > want to > > > > prepare myself. The last time I didn't know what it was and we got > him > > > > to the hospital way too late. I want to be a bit more prepared the > next > > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Yes this is possible. Amazing but the liver from the donor can regenerate itself in time too. I will be the donor for my adopted daughter should she ever need it, We are praying hard for SVR when we start meds this summer. The FDA requires her to be 3 years old before the drugs can be used. I was so stunned when I was a match to her. Guess she was always my daughter. Also to match livers is a bit easier than hearts, lungs, because for the living donor program you only need someone who is the same blood type. This is what our pedi gastro told us. It is an amazing gift isn't it. I was a heart - lung transplant nurse in the ICU and I was always so touched when the new organs came in and we were prepping our recipients. What a sad - happy time, you couldn't help but get emotional. ________________________________ To: livercirrhosissupport Sent: Sunday, February 8, 2009 8:08:56 AM Subject: Re: My brother Jack I was wondering penny I have been reading so much of the groups postings about implants can these really be done I was even told that peoples family and friends are offering splitting their liver to implant in a loved one is this possible? One of our dear friends phoned me last night and was so sincere when she offered me part of her liver I am so choked up over this From: preciouspenny3 Sent: Saturday, February 07, 2009 9:32 PM To: livercirrhosissuppo rtyahoogroups (DOT) com Subject: Re: My brother Jack As we've all said before, a gastroenterologist is not the one to say what his MELD score will have to be or anything about him getting a transplant. The hepatologist or one of the doctors on the transplant team know, so I wouldn't take a lot of stock in what the G.I. says. He just needs to refer him to the transplant hospital, and that's just a small amount of paper work and a letter to the transplant center. I was referred from my gastroenterologist to the transplant hospital in just a couple of days, and then received a letter from the transplant hospital about starting the evaluation. The transplant hospital does all the tests needed for the evaluation. Once you start the evaluation process at the transplant hospital, it usually does take a few months. It took me about 3-1/2 to be evaluated by the transplant hospital before getting on the list. Penny > > > > From: susiefoss@ <susiefoss@> > > Subject: My brother Jack > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his apartment > today. He lives > > > > a mile from me. So I'll be taking care of him now with the help of > our > > > > mother. He went to the doctor yesterday and the doc said his MELD > score > > > > was 17. It was 10 a few months ago. They said they won't even > consider > > > > a transplant until that number reaches 30. Seems so high to me. > > > > The doctor said he'll continue to have episodes of confusion. Does > > > > anyone know how often those happen? They are pretty scary and I > want to > > > > prepare myself. The last time I didn't know what it was and we got > him > > > > to the hospital way too late. I want to be a bit more prepared the > next > > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 This doctor is WRONG WRONG WRONG!!! Tonight, across the country are many people who presented in the ER with acute liver failure. Many of them received emergency liver transplants. It does NOT take months to get on the list. For an elective procedure, which is when we plan for the transplant, getting evaluated and listed by UNOS does require some " hoop jumping through " , but I assure you, it often does get done in a matter of hours if the condition of the patient warrents, and there is NO sign of substance abuse, such as.cirrhosis from billary atresia in children and primary bilary cirrhosis in a non drinker.. Who ever is telling you this is commiting malpractice. Trust only the transplant team surgeon at a major university or transplant hospital, please. We know too many people who died because of misinformation surrounding transplants. Too many times, a doctor says a patient is not a viable candidate, and we take their word for it, not knowing better. Especially for those in rural areas, where family doctors are not in regular contact with liver disease patients, and maybe not up to date on the latest info regarding transplants. This is a big problem. A lot has changed in just the last 5 years. We went from a " time in line " system to a " greatest need " system. One of our members who joined last year went through this with a loved one. In that case, their doctor just kept procrastinating, and acting like an appointment to a hepatologist was a major thing, when in reality, it is no different that making any doctor appointment. Jacks doctor needs to only make ONE PHONE CALL. He may need to send a referral out to the insurance company, but he is totally pulling your LEG. I have learned this the hard way. Please first have Jack sign an advanced directives form, placing one or all of you. Loved ones in charge. He is going to need this for sure. Then call his doctor, after you are legally his medical proxy, and tell the nice doctor you want a referral to the nearest liver transplant program. Do not let them give you the run around. Please email me privatly if you need further help. Then I can give you my phone number, and can more fully explain this. My email is robwalkingeagle@... Good luck, Love, Bobby Aragon Sent via BlackBerry from T-Mobile My brother Jack > > > > > > Hi everyone. Well Jack is coming back to his apartment today. He > lives > > a mile from me. So I'll be taking care of him now with the help of > our > > mother. He went to the doctor yesterday and the doc said his MELD > score > > was 17. It was 10 a few months ago. They said they won't even > consider > > a transplant until that number reaches 30. Seems so high to me. > > The doctor said he'll continue to have episodes of confusion. Does > > anyone know how often those happen? They are pretty scary and I > want to > > prepare myself. The last time I didn't know what it was and we got > him > > to the hospital way too late. I want to be a bit more prepared the > next > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Hi Ron, Yes, living liver donation is possible. When I was in the hospital before my transplant and before a match was found, the surgeon told me that I would need a living donor to donate part of their liver to me in order for me to live long enough for a match to be found for a whole cadaver liver. The surgeon told me because I have Hepatitis C, a partial liver from a living donor would only be a temporary fix, and I would have to have two transplant surgeries once a cadaver liver was found. My brother was going to donate part of his liver for me, and a guy my husband worked with offered part of his liver too. I was lucky that a match was found of a whole cadaver liver so I didn't need to have two transplant surgeries. Penny > > > > > > From: susiefoss@ <susiefoss@> > > > Subject: My brother Jack > > > To: livercirrhosissupport > > > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his > apartment > > today. He lives > > > > > > a mile from me. So I'll be taking care of him now with the help > of > > our > > > > > > mother. He went to the doctor yesterday and the doc said his MELD > > score > > > > > > was 17. It was 10 a few months ago. They said they won't even > > consider > > > > > > a transplant until that number reaches 30. Seems so high to me. > > > > > > The doctor said he'll continue to have episodes of confusion. > Does > > > > > > anyone know how often those happen? They are pretty scary and I > > want to > > > > > > prepare myself. The last time I didn't know what it was and we > got > > him > > > > > > to the hospital way too late. I want to be a bit more prepared > the > > next > > > > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Yes, the whole transplant thing is a very emotional and spiritual experience. One minute you don't know if you will be alive for much longer, and then a match is found. I was so terribly emotional tearing up all the time when I was in the hospital before and after my transplant. Even my nurses would tear up and hug me a lot. It is the most precious gift of all. Words can never express how thankful and grateful I am to my donor's family. Penny > > > > > > From: susiefoss@ <susiefoss@> > > > Subject: My brother Jack > > > To: livercirrhosissuppo rtyahoogroups (DOT) com > > > Date: Saturday, February 7, 2009, 7:24 AM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Hi everyone. Well Jack is coming back to his > apartment > > today. He lives > > > > > > a mile from me. So I'll be taking care of him now with the help > of > > our > > > > > > mother. He went to the doctor yesterday and the doc said his MELD > > score > > > > > > was 17. It was 10 a few months ago. They said they won't even > > consider > > > > > > a transplant until that number reaches 30. Seems so high to me. > > > > > > The doctor said he'll continue to have episodes of confusion. > Does > > > > > > anyone know how often those happen? They are pretty scary and I > > want to > > > > > > prepare myself. The last time I didn't know what it was and we > got > > him > > > > > > to the hospital way too late. I want to be a bit more prepared > the > > next > > > > > > time. Why doesn't the lactulose keep those from happening? > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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