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Old 07-07-2012, 01:11 PM   #1
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Join Date: May 2012
Location: florence, oregon usa
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florence5 HB User
More questions about end stage liver failure

Hello,

8 months ago my husband was told he had a lesion on the upper lobe of his liver.after the biopsy we were told he had chirrosis and they werent sure what the lesion really was. we were told that if stopped drinking and did all the right things ( lose weight,eat right) what damage was done was done and would stay like he was.a little sick but ok. thats not how it is.he has progessively gotten sicker.ascities is real bad, just had 10 liters removed from stomach.ammonia levels seem to stay high. lactulose does not seem to be helping anymore. xifaxan now for 2weeks and still seems to mentally not be here.was on 4 lasix(max dose) now on 3,spirolactone had to be stopped afew days ago due to very low sodium,very high pottasium,just everything out of whack.bilirubin goes up and down only down to about 6.7 or so. we were told thats not good with the up and down. when we started this they said his MELD score was 16 within 3 months of this it was 18 today 8 months later it is 24.he could be put in the transplant list until he meet his BMI. he has now lost it but because of the ascities, goes right back up. stomache is very large and legs look like ballons.they just called for the appt. for all of the testing they do for transplant list but my fear is it is to late. blood is bad, kidneys are starting to fail,within days of water removed his stomach is swelling agian.
i wanted to know if the lactulose not working and the blood getting worse, is this a sign that the liver is just going to stop working now.we where told 6 months maybe without a new liver. and will we know when the time is near. i am trying to keep hope but every day it is worse. our kids are young and i need to prepare them for anything and everything.

any information on what more to expect would be great. and for everyone else going through the same types of things i give u a big hug and lots of prayers for u and yours.

 
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Phoenix (07-13-2012)
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Old 07-13-2012, 05:02 PM   #2
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Join Date: Jul 2012
Location: St. Louis, Missouri, USA
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Muffin3602 HB User
Re: More questions about end stage liver failure

I'm so sorry to read about your husband. My 49 yo nephew just died from cirrhosis and was only diagnosed on May 30. He died July 12. I started noticing him sleeping alot and he told me his sleep pattern was off..he would wake up at 4:30, throw up, feel better and then go back to bed. He also had skin bumps that he would pick at. I noticed confusion within the last two months. I think he had it much longer but everyone attributed the confusion/memory loss to drinking. Unfortunately, he also had seizure disorder and was non compliant with meds. He didn't have insurance so the hospital diagnosed him and sent him home with the instructions to stop drinking. He didn't and my poor sweet tender hearted former registered nurse died alone on Tuesday. I'm praying for you and your family and I hope this info helps. I had absolutely no idea it could go so fast.

 
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florence5 (07-28-2012)
Old 07-28-2012, 11:09 AM   #3
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Join Date: May 2012
Location: florence, oregon usa
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florence5 HB User
Re: More questions about end stage liver failure

just returned from visit for transplant evaluation.everyone is on his side just have to wait for final word. sad part is they think it is to late.he has become so unstable.no one, including us thought it would happen this fast. to muffin3602 i am so sorry and my heart goes out to you and yours.

 
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