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Gastroenterology (Expert Forum)
end-stage liver disease
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end-stage liver disease
by sophster, Feb 09, 2002 12:00AM
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
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
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.
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
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
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
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)
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
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.