Guest guest Posted February 16, 2012 Report Share Posted February 16, 2012 I am Kim. I am 34, mother of 3 great kids. I have been married for 10+ years, and 2 years ago my husband was diagnosed with cirrhosis. In November we were told he had maybe one year (still haven't been able to find out how they come up with that number)and that he was advanced. He had a MELD of 19. They were going to put him on the transplant list, until discovering we had no health insurance to cover the cost. I have always kept up with his lab work, and know what his numbers have been, and the comparison to the normal range. For some reason they would not give me the print out this last time he was in the hospital. I only know his bilirubin was 10 (normal for him is between about .7 & 1.1) I have heard (and i am sure that is akin to jailhouse lawyers) that once the parascenthesis(sp) becomes quite regular that is a sign that he is doing very badly. I do now know if that is true or not. I have read everything i can find, but nowhere have i been able to find something tells me what i feel the need to know. I am hoping that somewhere in this group i can find answers and friends who have either been there are are there. People who understand what it's like to watch the love of your life deteriorate. I just don't know where to go or what to do anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2012 Report Share Posted February 18, 2012 Dear Kim. I understand how you feel about the frustration of not finding answers, but let me say that your posts indicate that you are very sharp, and will soon be able to hold your own in a discussion of advanced liver disease. Our group home page is located here http://health.groups.yahoo.com/group/livercirrhosissupport/ It has a section called " files " in it. There you can find a powerpoint on how to read a CT scan of the liver, several powerpoints on major complications, like the " hepato-renal syndrome " , and " the hepato-pulmonary syndrome " . There is a paper called " clinical outcomes in cirrhosis " . This paper or one like it is how they come up with the prognosis they gave your husband. There is even a complete college mini course in liver disease from the university of North Carolina. Ask lots of questions, and the many people here will post answers from thier own knowlege and experience. We have over 500 members, including many many transplant survivors, and caretakers, and patients. Your assesment about the parecentesis is not far off. It is not good. Your husband should be eligible for medicare, because if his parecentesis is regular, he should be " blue book " eligable for SSDI. Please contact me before applying for SSDI. Please remember that you should have a power of attourney for your husband, and his medical records belong to him, he cannot be denied access to them. You should get those labs. Also, unless he went through a full transplant evaluation, and the social worker for the head transplant surgeon was the one who said he couldnt get a transplant because he couldnt pay, the transplant isnt really off the table. His primary car doc, gastro, internest, etc, cannot make that desicion. I say this because so many people are scared off by some one who is not really in the loop. The only loop which counts is #1 transplant surgeon, #2 transplant social worker #3 hepatologist,#4 your husband and you. No one else can say no, and he should be eligible for a liver transplant, paid for by medicare. Just my opinion. Love, Bobby  ________________________________ To: livercirrhosissupport Sent: Thursday, February 16, 2012 10:33 PM Subject: Hey  I am Kim. I am 34, mother of 3 great kids. I have been married for 10+ years, and 2 years ago my husband was diagnosed with cirrhosis. In November we were told he had maybe one year (still haven't been able to find out how they come up with that number)and that he was advanced. He had a MELD of 19. They were going to put him on the transplant list, until discovering we had no health insurance to cover the cost. I have always kept up with his lab work, and know what his numbers have been, and the comparison to the normal range. For some reason they would not give me the print out this last time he was in the hospital. I only know his bilirubin was 10 (normal for him is between about .7 & 1.1) I have heard (and i am sure that is akin to jailhouse lawyers) that once the parascenthesis(sp) becomes quite regular that is a sign that he is doing very badly. I do now know if that is true or not. I have read everything i can find, but nowhere have i been able to find something tells me what i feel the need to know. I am hoping that somewhere in this group i can find answers and friends who have either been there are are there. People who understand what it's like to watch the love of your life deteriorate. I just don't know where to go or what to do anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2012 Report Share Posted February 18, 2012 Hi Kim: My name is Jackie Ellermann. My husband, had his transplant May 26, 2010. He was very sick with non-alcoholic cirrhosis and liver cancer and almost died. At one point his MELD score was as high as 39 on a scale of 6-40. We also had a gastro doc tell us we shouldn't get our hopes up of him getting a new liver. Well, we proved him wrong, didn't we? I have written a book about our experience as patient and caregiver. I have learned a lot from this group and have even dedicated my book to these wonderful souls. My book is called " The Mustard Seed " . You can order it online by going thru google, amazon or & Noble. Just type in " the mustard seed by jackie ellermann " and it will come up. God bless you and your family and welcome to our group. Jackie Ellermann ________________________________ To: livercirrhosissupport Sent: Friday, February 17, 2012 12:33 AM Subject: Hey  I am Kim. I am 34, mother of 3 great kids. I have been married for 10+ years, and 2 years ago my husband was diagnosed with cirrhosis. In November we were told he had maybe one year (still haven't been able to find out how they come up with that number)and that he was advanced. He had a MELD of 19. They were going to put him on the transplant list, until discovering we had no health insurance to cover the cost. I have always kept up with his lab work, and know what his numbers have been, and the comparison to the normal range. For some reason they would not give me the print out this last time he was in the hospital. I only know his bilirubin was 10 (normal for him is between about .7 & 1.1) I have heard (and i am sure that is akin to jailhouse lawyers) that once the parascenthesis(sp) becomes quite regular that is a sign that he is doing very badly. I do now know if that is true or not. I have read everything i can find, but nowhere have i been able to find something tells me what i feel the need to know. I am hoping that somewhere in this group i can find answers and friends who have either been there are are there. People who understand what it's like to watch the love of your life deteriorate. I just don't know where to go or what to do anymore. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2012 Report Share Posted February 20, 2012 We have applied for social security already. We have an attorney working on it. We had to apply immediately because of the length of time he has been not working. More than 5 years now. The transplant liaison is who said he wouldn't be able to get a transplant because of the no insurance thing, plus ee don't have any " proof " he's not drinking anymore. It's very difficult sometimes. I've tried to learn everything I can about liver disease, and the end stages, and the MELD score. But it still seems like I always find out something else I didn't know, that I should have. Thanks for the information > > Dear Kim. > I understand how you feel about the frustration of not finding answers, but let me say that your posts indicate that you are very sharp, and will soon be able to hold your own in a discussion of advanced liver disease. Our group home page is located here > http://health.groups.yahoo.com/group/livercirrhosissupport/ > It has a section called " files " in it. There you can find a powerpoint on how to read a CT scan of the liver, several powerpoints on major complications, like the " hepato-renal syndrome " , and " the hepato-pulmonary syndrome " . There is a paper called " clinical outcomes in cirrhosis " . This paper or one like it is how they come up with the prognosis they gave your husband. There is even a complete college mini course in liver disease from the university of North Carolina. Ask lots of questions, and the many people here will post answers from thier own knowlege and experience. We have over 500 members, including many many transplant survivors, and caretakers, and patients. Your assesment about the parecentesis is not far off. It is not good. > Your husband should be eligible for medicare, because if his parecentesis is regular, he should be " blue book " eligable for SSDI. Please contact me before applying for SSDI. Please remember that you should have a power of attourney for your husband, and his medical records belong to him, he cannot be denied access to them. You should get those labs. Also, unless he went through a full transplant evaluation, and the social worker for the head transplant surgeon was the one who said he couldnt get a transplant because he couldnt pay, the transplant isnt really off the table. His primary car doc, gastro, internest, etc, cannot make that desicion. I say this because so many people are scared off by some one who is not really in the loop. The only loop which counts is #1 transplant surgeon, #2 transplant social worker #3 hepatologist,#4 your husband and you. No one else can say no, and he should be eligible for a liver transplant, paid for by medicare. > Just my opinion. Love, Bobby >  > > > ________________________________ > > To: livercirrhosissupport > Sent: Thursday, February 16, 2012 10:33 PM > Subject: Hey > > >  > I am Kim. I am 34, mother of 3 great kids. I have been married for 10+ years, and 2 years ago my husband was diagnosed with cirrhosis. In November we were told he had maybe one year (still haven't been able to find out how they come up with that number)and that he was advanced. He had a MELD of 19. They were going to put him on the transplant list, until discovering we had no health insurance to cover the cost. > > I have always kept up with his lab work, and know what his numbers have been, and the comparison to the normal range. For some reason they would not give me the print out this last time he was in the hospital. I only know his bilirubin was 10 (normal for him is between about .7 & 1.1) > > I have heard (and i am sure that is akin to jailhouse lawyers) that once the parascenthesis(sp) becomes quite regular that is a sign that he is doing very badly. I do now know if that is true or not. > > I have read everything i can find, but nowhere have i been able to find something tells me what i feel the need to know. I am hoping that somewhere in this group i can find answers and friends who have either been there are are there. People who understand what it's like to watch the love of your life deteriorate. I just don't know where to go or what to do anymore. > > > > > Quote Link to comment Share on other sites More sharing options...
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