End Stage Liver Disease - Help please

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fairydust1
New Member


Date Joined Sep 2011
Total Posts : 8
   Posted 9/13/2011 4:00 AM (GMT -6)   
hi, i am new to this forum and would really appreciate some help and advice.

My mum has end stage liver disease and that's as much as i know. She has been in and out of hospital 4 times in the last couple of years with bleeding and has had banding procedures done on all occassions. The doctors had said on her last visit to hospital (june this year) that next time she comes in will be her last and she will not make it. She nearly passed away this time. (we know this as they said this in front of my step father)

She will not tell me or any of the family anything that the doctors have told her, and she will not go to any appointments that she has. She cancels them and hides the letters, she isn't very good at taking her medicine either. The doctors will not tell us anything due to patient confidentiality and she will not sign any forms for us to act on her behalf. It is very frustrating as i do not know how long she has left and anything they have said to her. She has varicies, she gets confused but this has been over a long period of time it seems the norm. We are clueless to how bad she really is, and do not have any of her test results. She lies about what tests they do, and has said she is doing well and only needs to be seen yearly now? i find that very hard to believe. I spend every day thinking the worst and she is making this worse by not talking to anyone. She is drinking very heavily. She has never been in a coma but is suffering from a sore throat and bad stomach ache at the moment, is this a sign its getting worse? If anyone can offer me any info on her condition from personal experience i would be grateful. It will be easier to deal with if i know what to expect and what is likely to be happening. It hurts so much that she does not talk to me, and she doesnt even say she has esld, she says its just anemia. She is also reading stories in magazines and thinking it has happened to her. For example she read a story about a young girl being raped by her father, and she is telling everybody this happened to her, she even said i just read this in a magazine and remembered it happened to me. It breaks my heart that she says this to my 14 year old sister. Is this signs of her being confused, or is she just trying to blame her drinking on this?

I would really like to know what she would have been told and what tests she would have had, and from experience what her prognosis is like.

Many thanks for your time, i wish everyone the best for themselves and families.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/13/2011 3:41 PM (GMT -6)   
Hi, Fairydust, and welcome. I am sorry I failed to welcome you in your previous post. I was under the impression that you had posted before.

I suggest you read the information in the folder at the top of the page entitled Hepatitis Resources. It is about liver disease in general, not just viral hepatitis. It gives information on the stages of ESLD and there's also information about dying from the disease.

The symptoms of sore throat and tummy ache sound more like a virus than liver disease. However, her confusion may be from elevated ammonia levels in the brain, which is normally treated with Lactulose. Her continued heavy drinking is killing her. If she will not stop, she is going to die, though it's difficult to say just when. She will continue to have symptoms of ever-increasing severity.

Short of getting her court-ordered to inpatient alcohol treatment, there's nothing you can do.

Since she continues to drink, the doctors may very well only want to see her every 6 mos. or so. They know that there is nothing they can do if she won't stop drinking. Her drinking undermines any good they could do, so they consider it a waste of time. I'm sorry the news isn't better, but I believe in being honest.

I suggest you read through some of the posts on here from caregivers who have recently lost loved ones to the disease as they continued drinking or didn't stop in time. Also check out the Caregivers thread for support and information.

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland
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