Help - please

[crzykris]

My mom was diagnosed with Autoimmune Hepatitis over 9 years ago. Can anyone who has been through the final stages of this disease please help me. I want to know how bad this disease gets? The doctors have told us she could go anytime but some of the things I read say that this can last for years. I do believe she is now at the decompensated stage. I believe that because the specialist were seeing her monthly and she was being banded for the varisee's every 2 months and now the specialist is not scheduled to see her for 6 months even though her #'s are worse and her symptoms have went downhill and the doctor who told us she needed banded every 2 months now told us just to call if she needs the procedure done again. She had 5 heavy bleeds between the last banding. They did not require hospitalization but they did feel the toilet full of blood and she had to were depends for hours after cause it would not stop right away. She has had several rectal bleeds due to varisees. She has been hospitalized several times for this.  She has leg spasms and hand cramps on a nightly basis, she gets confused easily and does things like answers the phone with the tv tuner.  Her sense of balance comes and goes. She just developed tremors. She has had fluid taken off her belly only once but they didn't get much even though her belly is hugh. And she has swelling of her legs, ankles and feet. If anyone could please help me with any personal experiences I would greatly appreciate it. I want to know what to expect (how much worse it can get) or any length of time when these are the symptoms. I guess to sum it up is I love her and want her around forever and I just want to know what to expect next.Thanks.

[Jody515]

I really don't know anything about the bleeding but my brother did endure the removing of liquids.  I don't know there is any clear way to be informed of anyone's demise but I agree with drian, maybe a transplant?  Is there a hospital in your area where liver transplants are performed?
For those 9 years wasn't she on medication for AIH or?
I am sorry to hear of your problems & please keep us up to date.  Best wishes

[drian]

Maybe you should ask some doctors about a liver transplant. I heard it's the last option.