What to expect from End Stage Liver Disease? Please Help!

In 2007, my mother was diagnoised with End Stage Liver disease. They only gave her 3 months to live and was placed on hospice home care. Her disease was brought on because of alchole, but fortunately enough, her liver still had a little more "life" in it, and she pulled through. After a year on hospice, they decided that her liver was well enough to function her off hospice. The unfortunate part is that she continued drinking... non-stop.
In 2009, her liver began to show signs that she was ending back to where it was.
She is a very small frame (only about a size 6) but looks like she's pregnant with twins. The doctor's did all they could to stablize her but unfortunately, with all ther doctors were doing, she'd go home the same day and drink.
In 2010, she's slowly declined. Now, as I type this, I'm sitting next to her in the hospital. Christmas day, I brought my mother to the hospital because she was bleeding out her nose, vomiting blood, and her feces where bloody. Doctor's placed her in ICU and "tied off" the verisee veins (spelling??? ) in her esophagus, which so far is successful. Then later that day, "drained" 7 liters of fluid off her stomach and did an ultrasound that determined that the TIPS was clogged (preformed in November 2010). A couple of days ago, doctor's said her amonia level was at 96 (below 20 is normal) and her kidneys were (I don't know if I'm right on this one, I may have misunderstood) at a 2 (failing). And yet again, that evening they "drained" another 6 liters off her stomach and "unclogged" her stunt. This morning, I was told there was a TINY improvement where her amonia level is 91 and kidneys are a 1.73 (which lower is better).
We have tried to not get too excited, because the doctor's are saying they are exhausting all options in helping her now and we are waiting for tomorrow to see if her Primary Care Team, GI Team, & Kidney Team of doctor's have determined wether or not her kidneys are failing because of her liver. They say if it is the case, they only give her 3-4 WEEKS to live.
My mom has her final will stating that she is not to be resusitated nor intibated, and she's requested no dialysis. She refused a cathiter for the first 3 days in the hospital because it was uncomfortable, until I begged her to do it, but if I leave for a second, she pulls it out and bleeds alot. I feel that she's given up.
I think now though, she sort of has a regret for drinking and not stopping when she was well enough to "recover", but she's trying to refuse all options.
I respect my mother's wishes, and if it is to die, so be it. I will not like it, but I will support her. So, as I go down this road with my step-mother (they are life partners), we are left to wonder what is going to happen. We've heard how it will be painful and that it's a slow death, but does anyone know details??? What will happen to her? She is sleeping 90% of the time now (not medicated, nor has pain medicine, not even an IV). The 30 minutes a day she is awake, she is dilusional and doesn't comprehend anything. She seems almost like she's in a dream. She's slowly not talking much with when she is awake and when she does talk, we have no idea what she's talking about. She's a yellowish color (jaundice maybe?).
Anybody who has been through this with a loved one or a medical professional with this experience with ANY information would be helpful. We would like to know a little more at what to expect in the sense that we won't be blindsided by anything that will happen with my mom. (Will she bleed out more? Will she pass in her sleep? Will she fight for her final breath? Will she asperate? Will she slip into a coma?) Details are preferred and trust me, I'm not faint at heart by no means, so please, if this site will allow, I ask of you to tell it.
Thank you & God bless.

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Hi There

OMG.. Well at least you are in the real world, thats all I can say.. This is so traumatic but you have accepted Mums wishes....This is hard

Your Mum is not getting better, she is refusing help but these are her wishes.
My husband has been thru a liver transplant and I have been and I still am supporting people on this site. Like your self some outcomes have not been good, and they have lost there loved one.

The yellow is definately juandice. The amonia levels being so high will bring on dillision as they affect the brain and once they reach a certain levels your Mum will slip into a coma . They are probably giving her lactulose to help this,, If she slips into a coma there will be now pain... If there is pain they will manage it.. There will be swelling.. As in bleeding out I dont know.. All organs will start to shut down.. Like her kidneys are showing signs now.. She could even have cardiac arrest..... I wish you all the strength and love in the world and be prepared.. If you want me to keep in touch while this happening Im here always

God Bless you

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Thank you for your encouragement and kind words. The information you have given is very helpful. Thank you.

Today, my mom is home on hospice & she has had one of the best days she's had since she was in the hospital. I woke up to her smiles, laughs, & even a few jokes. Her wife & I were even joking because she'd laugh at us about something days ago. It was so nice to have seen her smile, knowing it may be the last one.

Thank you again!

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Dear Cherished Love and Deidre,

I am new on this site. I am so inspired by your questions and answers and the vulnerability in sharing something that is very hard to handle. I too am not well, but I'm still here and I'm doing what I can to contribute to this world and take care of myself in anyway possible.

Deidre your knowledge and compassion you wrote for Cherished Love is so heartfelt.

Cherished Love "I appreciate your sentence about your mother, "It was so nice to have seen her smile, knowing it may be the last one." There is a saying by a spiritual master that reads, "It is better to give a single rose now, than a wreath on my tombstone." We all have an opportunity to learn from everything that may come into our life and you two have really touched my heart. Thank you.

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I am sorry to say, that if she refuses to stop drinking there is no hope! You can not help someone unwilling to help themselves. Diet is another thing that must be adhered to. Right living and exercise are the only cure even if she recieved a new Liver. To my knowledge, most hospitals will not transplant a patient until they are alcohol free for at least a period of six months!

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Dear Cherishedlove98,

My father just died Feburary 27th, 2011 in Atlanta/Piedmont Hospital from Acute Liver Failure due to alcohol. He was diagnosed 14 years ago with cirrhosis and had his esophagus banded at that time. He quit drinking for 2 and half years. A nurse told him that the liver regenerates itself and he could have a couple of drinks a week os he started back drinking. Unfortunately, an alcoholic cannot only drink a couple a week. So, at the end of January 2011, he fell on the bathroom floor one morning and couldn't get up. His stomach, legs and feet were massively swollen. He refused to go to the hospital for 3 days. By the 3rd day he started showing mild confussion. He was diagnosed with alcoholic hepatitis and Cirrhosis. They said he would need to be on prednisone for at least one month for the inflamation and never drink again. They withdrew fluid from his stomach every week he was in the hospital during his 5 week stay. They told me he would be able to leave the hospital and recover but it would be a difficult recovery for someone his age. He was 65 years old. They gave him sedatives twice the first 2 weeks in the hospital because he wanted to leave. After 2 weeks in Newnan hospital, they released him home. They wanted him to go to physical rehab but instead, he went home for 3 days and then my mother sent him to Piedmont hospital in Atlanta. They put him in ICU with no food or drink for at least 7 days. After he was moved to intermediate care, within 4 days, he went into a hepatic coma. Six days later, he had renal failure and they put him on an oxygen machine. They said he would have to have kidney dialysis and a ventilator to stay alive. His wishes were to not be artificially kept alive so they sent him to hospice care and he died the next day.

When I look back on it all, I feel like there were some shortcomings. For instance, I am not sure Piedmont hospital was continuing to treat him for the hepatitis. I wonder how he was affected by not eating for such a long period. When he was in ICU, he continually asked them for food and drink but he was only allowed limited ice chips. He was in a coma for 2 days before they put him on a feeding tube. They told us that if he gets put on a ventilator, he will have brain damage, get sepsis, eventually require a trachiotomy and probably be in a wheel chair for the rest of his life IF he comes out of the coma. None of the doctors had any hope for him after he went into the coma but, prior to that, they thought he could stabilize and eventually recover as long as he did not drink. He was supposed to get out of the hospital after one week but he was retaining urine and they kept him in and the next day he tried to leave the hospital so they sedated him which, I have read is really bad for the liver. He was zoned out for days after that. I feel like things could have been different if he had either gotten out that first week or have gone to physical/brain rehab. But I'll never know now.

After his funeral, I met someone who told me that her father went into a hepatic coma and she sent him to a brain rehabilitation center. He recovered and is a recovering alcoholic. Another person told me that his wife went into the hospital for the same condition, she got out and he took her every 2 weeks to have fluid withdrawn from her stomach. She died after 9 months because she would not stop drinking.

Now, my brother and I took my mother to an internist and a GI. We found out from her MRI that she has cirrhosis, pancreatitis, and anemia. The GI said she probably has a year to live more or less. She has now done 2 weeks of alcohol rehab. They have called us to say that she needs to go to an assisted living facility because cognitively she is not capable of doing the therapy and she has fallen 3 times. She is 58 years old. She is actually enjoying being there and wants to stay for a month.

I had no idea my father was in such bad health. He never said anything and he refused blood test at the doctor's office. He was active, working and enjoying an active social life. On top of all of this, he did not have any insurance. He dropped his insurance to get medicare because he had turned 65. However, the medicare had not gone through when he was admitted to the hospital.

How is your mother doing now?

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Hi all
I a new to this group but have been on some others for about only a month. I have found nothing but comfort and compassion for myself for i go through alot everyday.

I am so confused about 6 years ago i moved back in with my hubby we were divorced and got back togehter for sick sons case.

anyways his father lived with him nobody in hubbys family was doing anyhting my hubby(mike) wasnt doing anything either as far as his dads illness is concerned ii had always been close to dad i even call him after the dovroce we always stayed close luckily. anyways BTW: he was a very heavy drinker he has 3 sonsandthey are all married the wives didnt like him because he owuld drink and stop by at everyones house and they didnt want him near the kids acting lke that i am talking really bad alcoholic!! he would go to this bar it opened at 7am and he would stay until about 12 1 the latest go out to lunch or come home for lunch i was home schoolingmy son then anyways he would come in and knoc everything over get sick int he bathroom poo and alll kinds of stuff on walls messed in his pants and would leave after a snack and a rest for an hour and go back to bar until 10pm. i argues hard with my hubby mike and said mike this has to stop not only for his health my son was scared of him acting thsiway he wasnt a mean drunk he was happy but didnt have the faintist idea od what the heck he was doing and he would also frive himself to and from bar i was scared he was going to kill someone or himmself
so one day he came hme not that drunkk and i told him what he does left the mess in the bathroom and he said how did all this happen i said oh that is what u did last night on youe bender. he got very embarrassed cause when i wasnt there mike would just clean it up and not say anything well shoot i am notlike that i said now go on there and clean it your grand sonis very scared of u and scared to go in the bathroom from howo u leave it. anyways it took me 4 months but i got himto the doc he withdrew from alcohol joined the YMCA i set up for him and started to swim alot and such eating better cause he alsoo found out he had celiac

now his blood platelettes recently have been havng trouble with they have gone down as far as a 4 they are suppose to be i am told in the 150000 soo they decided to remove his spleen i was so scared i am the onyl one who has the patience to take care of him but now i had a break down cause he fought me every step of the way u have to understand i have panicdisorder and depression it is hard on eevryone but my psychiatrist toldme to tell mike he is your father and to call your brothers we need help he still doesnt listenn at all
some kind gentlemen here told me the basics he should be having inn his diet i mentioned it to him and got all angry so i said fine forget it he thinks since he dont drink anymroe he will have no problems but i have been reading here and other places a lot that your det has a lot to do with it
is this true????????? and if so how long does a person withhtis diagnoses have to live even though he isnt drinking he is doing all kinds of crazy stuff i cant explain it he will ge on the diet kick for a week and then give up and go to burger king mcdonalds kentucky fried chicken all in one weeki dont know what else to do
any advice would be much appreciated thank u for your time:)
lolove to all of u jelsea

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Im a strong believer that the Body is very forgiving...
Sometimes the patient becomes stuburn, they forget what they
do to themselves effects everyone around them..

Watching someone hurt, an continue to hurt themselves is painful in it
self, cause you cant help them, unless they really truely want it..

Just dont give up on him, It takes a strong person like yourself not
turn away, when really he's needing your help the most.

Remember what he puts in his body, has to come out. Good luck, an
heed the advice on the diet, well dont look at it like a diet, look at it as "the Living for Life Diet"

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