end-stage liver disease

[sophster]

hope you can advise. my mother has been diagnosed with end-stage liver from cirrhosis. i have been told she is yellowish/green, very weak and very sick. she was in the hospital for 3 weeks for stomach bleeding. she released herself from the hospital ADA!
she has been an alcholic all her life and hasn't stopped drinking. i do believe she is unable to drink now because she is
so sick. i am her only child. my father died at 44 of a heart attack. she has caused many heart-aches for me. i had to walk away from her a year ago because i would no longer be an enabler.
i haven't spoken with her in over a year. a neighbor called and told me what happened. she has a directive in her medical chart stating no one can give me any info. it is very difficult for me.
she is at home bed-ridden with help from the vna only 3 times a week for 2 weeks.

i am very concerned and have no idea how long a person can survive like this. i would like to have some idea of if it is just a short time she has left so i can prepare myself, husband and her 2 grandsons. i understand you don't have her blood results nor have you seen her. i was just hoping you could give me some sort of time frame- days, weeks, months, years that this could last. i am not taking this well and feel helpless since she has now turned me away. the thought of her dying alone is very sad and i just need to prepare because my emotions are coming apart.

i thank you for taking the time to read this. any small bit of info would be greatly appreciated.

thank you

[brutus195]

A related discussion, My son has cirrhosis was started.

[millerdi]

Although I have never been through what you are going through, I can tell you though that my father being an alcohlic my entire life, he put my mother, myself and my 6 brothers and sisters thru hell most of our lives. The said thing that when he finally died, I had made peace with him and had forgiven him for all the terrible things that he did to us.  The sad thing was that he had 7 children and only two of us even showed up for his funeral. I felt like, he had been puished enough for the past mistakes of alchol and he died a very lonely man. Don't let that happen to your mother.  Today, my other siblings all have regrets for not making peace with him, because they each are having trouble making peace with their selfs now. I agree that you should go see your mother, and regardless of the outcome when she does die, you will be at peace knowing that you did the right thing. Remeber what the bible says about "honor your Mother and Father. God bless you and your family and I hope somewhere you find peace.  Good Luck!
Deb

[sophster]

tried to post a new message but the board said it was full. i hope you find this way down here.

i pray you get the liver you are waiting for. that is not an option for my mother. she went back into the hospital yesterday. i had to go to my doctor because i couldn't handle the not knowing anymore. it was tearing me apart. no one would tell me anything because of that damn directive in her chart about not speaking to me. my doctor was wonderful today. besides putting me a medication, she found out my mother is not well at all. she said from what she saw she has maybe a month. she told me the liver and kidneys are basically gone. she needed blood in the hospital. i got my answers and as tough as they are to hear at least i know. at this point i only hope god doesn't leave her to suffer much longer. she has been in so pain her life it is time for her to rest. i don't know if she will let me see her before she passes but i understand if she doesn't.

you hang in there. good things will come. just keep praying.
kathy

[imkindly]

I appreciate the prayers. You're in mine too.

The wait for a liver transplant is a long one (because not enough donor organs are available---not enough people sign organ donor cards).

Who "gets" the next available liver, is decided using something called a "MELD score".
"MELD" is determined by 3 things:
1. INR (bleeding time)
2. Bilirubin levels (jaundice)
3. Creatinine levels(kidney function)

My husband hasn't had bleeding problems yet, and he is not jaundiced (yellow) yet, so we are still waiting.

[Kittee]

Maybe your should try to see your mom Sophster and try to forgive and let go.  It will be best for you both.  

My heart goes out to you with these circumstances.

Take care of yourself and your family the best way you can and don't feel guilty for anything.

Kittee

[Prilobabe]

You are in my thoughts & prayers too. If at all possible, try to see your mom. If she refuses to see you, at least you gave it a try. Please do not put all kinds of guilt on yourself, I know that this is easier said than done but please try. It may help you to talk to a pastor or some other member of the clergy. Don't keep it all inside. We are all pulling for you.

[sophster]

i am so sorry to hear about your husband. i hope he gets the liver he is waiting for very soon. my prayers are with you.

thank you for giving me some of the particulars on what to expect since none of the people taking care of her will give me any information. i just know it is also end-stage liver disease. i do know she wouldn't be a candidate for a transplant because she never stopped drinking-if she has the strength, she probably still is. i guess i will just have to wait for the "phone call". i guess this could go on for months and i have to try and get back into my life with my family. if only the doctor would let me know how long we are looking at. he has to have some idea. it's just so hard when the phone rings. i always think it is going to be "the call". this could and probably will go on for months. by the sounds of it i don't think it is years. the nights are very hard for me because i picture her in her house all alone. it's a very sad situation but i guess i have to try and get over this depression i am falling into. my mother has her reasons for not wanting me involved and i guess i have to respect them. it's not easy though.

thanks again and your husband will be in my prayers.
kathy

[imkindly]

You asked if anyone knows anyone with these symptoms....

I'm more familiar with cirrhosis and liver failure than I'd like to be.
My husband went into liver failure (has end stage cirrhosis) (10% liver function), and is waiting for a liver transplant right now.
He is very ill.

I am going to be very frank with you....(and I hope this doesn't hurt anyone):
People in your mother's condition 'usually' die from one of 3 things:
1. Varices burst, and they bleed to death.
2. Encephalopathy cause a coma
3. Toxins and infections

(1) If varices burst, a person needs emergency care immediately (or they can bleed to death.)
(2) If they show signs of encephalopathy (it begins with sleepiness, confusion, slurred words, maybe tremors), they need to take medication (such as "Lactulose") to keep the encephalopathy under control. If they don't, they could fall into a coma (and the brain swells and they die.)
(3) If they get an infection (suddenly develop a fever), it can be a sign of spontaneous bacterial peritonitis, or sepsis, which has a 50-50 survival rate (when treated QUICKLY in an ICU with IV antibiotics.)


No one can tell you whether your mother will have one of those three things happen this week, next week, next month, etc.



You may want to check out
http://cpmcnet.columbia.edu/dept/gi/cirrhosis.html

There's also a huge page at
http://www.emedicine.com/med/topic3183.htm
(that gives details on every symptom)

[sophster]

thanks again to everyone who is continuing to give my some support. still no word from anyone. hopefully tomorrow the vna nurse will call and let me know if she is willing to see me. there is no way i can go over there if she doesn't want me there. i don't want to get her any more upset or worsen her condition.  maybe things aren't as bad as the seem. jaudice, bleeding, weakness and very ill has all i have gotten. maybe she will rally. that's the most fustrating part of it. the doctor won't speak to me. does anyone know if doctor's have been known to break the directive? has anyone known any one with these syptoms? how long the person survived? maybe rallied? i can't keep this up. i'm a basket case.  i teach religious ed and had to cancel my class because i couldn't bring myself to go. i will call the sisters tomorrow and maybe get some strength from them.
one minute i think its just a matter of days, but then at other times i feel as those she could have many months left. i just don't know. any info, no matter how small, would really help.

sorry to bother everyone since i know everyone has their own problems too. i think i am just writing for my on therapy. sorry.

thanks  kathy

[karizmaflip]

i am so sorry that you have to go through this. my mother herself is sick.well what you should do is call or go over there anyways.if she turns you away then you could give her space.it does not hurt to try.well anyways my heart goes out to you and your family.and good luck with your mom.

[sophster]

thank you so much for taking the time to respond to my post. it is helpful to "talk" to others that have info on this nasty disease. i don't know what enceph. is? i can't believe the doctors won't tell me ANYTHING!. i understand she has a directive in her chart not to speak to me about her condition. regardless, i think the doctor could have some sort of compassion and at least tell me how long i am looking at. sometimes it is of a greater good to break the directive. i have no sisters or brothers and no other family except my husband and 2 boys. i worry about her bills being paid as well as her morgage and medical insurance. i have always had to take over when she was on a binge. all is i know, like i said before, is one neighbor says she is green and another told me she is yellow. she has been bleeding from the stomach and is very weak and very sick. they were going to encourage her to let me see her, but i think since no one has called me in 2 days she has refused. i guess i have to honor her wishes as hard as it is. i don't want to go over there and upset her. if the end is near, i have no idea about her final wishes on burial nor life insurance policies. i'm sorry to rattle on, but i guess it is just therapy for myself. i am starting to get sick myself from this and probably should go to my own doctor because i can't eat or sleep nor want to do much of anything but cry.
thank you again for all your kind words. i guess the answer i need only god knows. i just hope she doesn't have to suffer but i'm afraid she will for sometime.

kathy

[imkindly]

I agree with what Kathy V said.
You need to do (and say) whatever it is that will keep you from carrying guilt feelings in the future.
There is no way of telling how long your mother has left, since you don't know too many details on her medical condition.
If she's yellow, that's 'jaundice' (caused by high bilirubin).
If she's been bleeding, that's 'varices'.
If she's bedridden, that could possibly be weakness, or malnutrition, or encephalopathy.
If she released herself from the hospital against doctors advice....that's a bad sign.
If she lives alone, and only has someone coming in 3 times a week....that is worrisome. You didn't mention whether she has encephalopathy or not....but if she does, she'll need daily help.
I encourage you to make your peace with her now.
Good luck to you.

[KathyV]

I just wanted to say my prayers are with you and your family at this time.  I have a girl friend that just lost her mother to the same when she was in the condition where it sounds like your mother is she only hads days left.  I am so sorry but my prayer for you is to release your mother from her gult at this time for her past with you   .  I hope your able to go to her and tell her and  forgive her for all, and ask her forgiveness. for anything you may have done to hurt her.  God Bless you and your family at this time Kathy