What should i do

[loves_fallen_angel]

my fiance has now been hospitalized going on now 5 weeks. What started out as an e-coli infection in his blood has now become a fight that doctors say is a losing battle as far as his liver is concerned. He has hepatitis c and is in stage 4 cirrhosis of the liver. the doctor has given him 3-6 months to live. I don't know what his test levels are, but over the last few weeks they haven't improved, but yet haven't declined either. He has jaundice and his level is i think on about a 4, his ascites production has slowed after having a total of 3 paracentesis' done. one about every 2 weeks. He is now staying more alert and not sleeping as much. His appetite is good, but yet the doctor is telling us to give up and go to a hospice house to let him " live comfortable" But we arent wanting to give up and was wondering what others would do in this situation? I feel in my heart that he has alot of living left to do, but doctors aren't so optimistic. any news and prayers are a big help. I'm 25 and my fiance is 42, and we have 3 kids that love there "tom-daddy" as he is soon to be their stepfather. I'm not sure how to deal with this and i am trying to stay positive for him.    HELP PLEASE..... any information is welcome

[loves_fallen_angel]

i have not yet had a chance to get his values on his bloodwork, but to asnwer your question, in march 09, he was put on the liver transplant list by his liver specialist. When he was inthe other hospital ( the one for 5 weeks). his Primary physician, not his liver specialist, said that he was not a candidate for a liver transplant. Since that hospitalization, they stopped informing us of what his liver specialist was saying. Even after repeated requests. I have now transferred him to another hospital in the city where his specialist is located, and have some of the best doctors. He is in ICU and they are fighting the issue at hand now which is internal bleeding, and an e-coli infection which has radiated to his legs causing necrotizing faciitis. so they are trying to erradicate the bacteria before taking any other step to make a decision on his liver. But i will check in on his lab results when i go back in there later on and i will let you know the results of the MELD score when i find out. thank-you for being so patient with me.

[cece7658]

FIGHT!  i agree with getting to a teaching hospital.  if that isn't or convient or possible, start teaching the dr's.  be armed with facts, symtoms and resolve.  hospice is a wonderful thing, it is not a death sentence.  use that network also for referals and knowledge.  those wonderful caring people are in the trenches everday.  ask for help, pick whichever advocate that suits you best.  there is help out there. all the best to you and your family.  cece

[HCA]

End stage liver disease is measured by the MELD (model of end stage liver disease )
scale.
It is very easy to calculate,just get from the doctor his bilirubin,INR, and creatinine and enter them into the calculator here;
http://www.mdcalc.com/meld-score-model-for-end-stage-liver-disease-12-and-older
Check his score on the internet and you will get an idea of survival prospects.
You haven't followed my main advice to investigate possibility of transplant.
You may need to be quick.

[loves_fallen_angel]

Hi I'm not sure about any of this. Right when i think i have all of my information right, something comes up and throws my brain for a loop again. First of all, before he was hospitalized, he was a very active person that loves to play with the children. He was an active person as far as our personal relationship went too. But after that he was fine till a week ago in spite of the infection. One thing is i took him to the hospital where his family physician was instead of where his liver specialist was. He had a paracentesis done and after that was when he got sick. so i felt that i didn't need to add more insult to injury by taking him back to the same hospital, just in case it might have been staph or something else. But instead i might have done just that very thing. I have asked since he has been hospitalized repeatedly for a second opinion. But that was never acknowledged by the doctors there. Now he'e been discharged on hospice. Because they say that he has "end-stage" cirrhosis of the liver. Even though deep down i feel that there is something else causing him to be so sick. and i know that all in all what ever it is is definitely not going to improve his liver functionality if i don't try to find out something. Am I wrong in that?

[HCA]

It would appear that there are clinical reasons why a liver transplant is not viable.
I don't know what they are but probably connected to the infection.
Normally a young man could expect to qualify for a new liver.
The only action I can envisage is getting copies of his notes and approaching one or more major hospitals with transplant facilities.and a liver unit.
Has his current doctor explained why there is no prospect of a transplant?
Is there cancer present?
End stage cirrhosis without fatal complications would be a case for transplantation.
Finally the hospital that is treating him-is it a major teaching hospital?