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Pink Grandma
Veteran Member

Date Joined Nov 2006
Total Posts : 2445
   Posted 5/22/2008 12:05 AM (GMT -7)   
Hello Kipper04, I am so sorry about the loss of your mom. Please accept my sincere condolences.

Take care and come back anytime. This forum has been a god send to me before and after the loss of my husband to this hideous disease.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

New Member

Date Joined May 2008
Total Posts : 17
   Posted 5/22/2008 3:26 AM (GMT -7)   

Thank you pink grandma and I really wish I would have found this forum alot earlier! What a wealth of information! In the end my mother has went through just about everything mentioned in this forum. She really only went into a coma  1 time- her last days and day by day her lab values and condition worsened to the point where we had to stop all measures and just try to let her be comfortable. She died within 9 minutes. In my mothers case it was really a catch 22. She begged for years for a transplant, and her doc here in Wi kept saying "No you are not bad enough yet" so she never even made it to the liver transplant evaluation. Finally in March her doctor says " Oh you are kind of getting worse maybe we should send you for that evaluation" By then she was too critical for even a thought of transplant. She died 1 day after her scheduled eval appointment. In Madison Wi, the doctor said to us he really has never seen a liver decompose that quickly (she had hemochromatosis)and after an autopsy maybe will better learn why it went so bad so fast. I urge everyone out there who has this horrible disease to press on and make sure your doctor at least gets you to the evaluation for the transplant, at least then you will be in the "system" my mom never had the chance and when I sit here I dont know if I am mad at someone for it for not diagnosing the hemochromatosis quicker (diagnosed 1 month before she died, and thought she just had alchohol related cirrhosis but hasnt had a drop to drink in 5 years)or if  I am just looking for someone to blame for this. But either way she is gone and I have to get to the funeral today, and at least try and keep my dad going on with his life. Thank you for letting me vent and if I can be of help to anyone just let me know!



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