Posted 10/21/2009 7:00 PM (GMT -7)
Lost_sad,
 
I have AIH (autoimmune hepatitis).  They don't know what my trigger was but if your brother's initial biopsy indicated AIH, why don't they think it's that anymore?  The diet drug he was on could have caused it as there are a few drugs out there that are known triggers.  He NEEDS to see a hepatologist.  You should also insist they check for AIH from bloodwork (ANA and ASMA---not always positive but lots of times they are) and second opinion on the biopsy.  The biopsy is the definitive diagnosis that hepatologists use when making AIH diagnoses that's why I'm surprised they are thinking it's alcohol related now.
 
I think you are a wonderful sister and I'm sorry it seems that the medical field has pushed him aside.  Are you going to a hospital affiliated with a university?  Some of those have great hepatologists on site.
 
Please keep us posted,
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 

Posted 5/18/2013 10:30 PM (GMT -7)
 
     Hi KC,
 
     Two years ago I was new to this as well.  Extremely healthy at 46 antibiotics destroyed my
   
     liver in 5 months.  If  it were not for the advice from Johns Hopkins I don't know if I would have lived.
 
    They advised me to go to FL for less waiting time.  I got a transplant and am feeling alive again and doing
    
    very well.    
 
    My MELD was 22 when I was listed and 33 at time of transplant.  All the above advice is good.  If  your
   
    insurance is approved the best places to go
 
     are Mayo clinic Jacksonville (where I went) Cleveland clinic( in Weston FL too, GREAT surgeon) or Oscher clinic
 
    in New Orleans.
 
     The 3 things to consider 1 - waiting time at the
 
     center (there are 11 regions) 2 - long term results and 3- number of transplants performed in a year.
 
     Each center will have a social worker on the Transplant team who can be a great resource for insurance options
 
     etc. I just called a lot of people and eventually found some very kind ones. I went through alot of similar
 
     suffering as your brother.  A big help is the book First Cirrhosis on amazon. There are people at Mayo who      
 
     took OTC supplements that destroyed their liver.  For me prescribed meds.  Alcoholic LD does NOT happen 
    
     overnight.  There are early physical signs and warnings.    
 
 
     I'm here  sending you warmth, caring, support and prayers.
 
Mayo Jacksonville has alot of people from far away
 
they stay at the MAYO Inn(most insurance covers and it's a super support network).
 
 
Posted 5/19/2013 6:59 AM (GMT -7)
albatross,
You're posting to a thread that's 4 years old. Not bad information, but....
nullum beneficium impunitum...
Posted 5/19/2013 8:59 AM (GMT -7)
Hi Albatross,
 
If you'd like to participate as one of our post transplant gurus, start a new thread and cut and past your intro information.
 
Can we help...or are you good now?
 
Mama Lama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
Posted 3/16/2018 12:50 AM (GMT -7)
Hi there, I hate to comment on an 8.5 year old post, but my mother is currently going through almost the same exact situation (MELD score of 32, labeled as alcoholic hepatitis and cirrhosis so she’s unable to get on a transplant list at this time, and she was also never a heavy drinker), and if there’s any way that you come across this comment after all this time I would be very appreciative. I’m wondering if you have any information, for better or for worse, about which steps you took next or if you have any other advice or input on what the outcome was. I am extremely scared that her current doctors aren’t taking this seriously enough and that she is running out of time.
Posted 3/16/2018 7:17 PM (GMT -7)
We have had a few members here, that have gotten transplants from alcohol and/ or drugs(viral hep)..
Most transplant centers will do their own evaluations, and most will ask for 6 months of documented sobriety..what kind of dr are you seeing?? How long has she had liver disease?

If you’re not getting proper answers, I would try contacting a transplant center where you live. They are usually in large universities..some drs Won’t help alcoholics, but most will..my opinion only.

I would start a new post. Many people read our website and may contribute their experience.

Let us know what you find out
Posted 3/26/2018 1:52 PM (GMT -7)
Hi Mapolonio,

My partner, Mike, has been in your mother's shoes im 2010...very ill, every symptom. He had hep C, alcoholic cirrhosis, and eventually liver cancer. Being an active drinker meant he could not get a transplant until he had documented sobriety for 6 months. He went to AA for 6 months and got his new liver at 6 months and one day later! He was very very ill.

The TP got rid of the cancer, which had not spread and the cirrhosis, but not the HEP C, which is a blood disease that knocks out your liver so he could ruin this new liver. But by 2014, there were meds for Hep C and he was cured. His liver had begun to show some problems but his last fiber scan showed his liver was good. His liver numbers...ast/alt, etc are fine.

At U Miami/Jackson Liver Center he got fabulous care. They were not against him because of the drinking, though his local GI doc took the tone that Mike had done this to himself, so... you finish the thought. But another doc referred Mike to Jackson and it has been a return to his life....7 years post TP.
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

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