Aa
85 year old aunt, End stage liver failure...
My auntie is now 85 years of age,
Around 4 years ago she started vomiting blood, when in hospital we were told she has non alcoholic fatty liver cirrhosis and she is dying, The way it was put to the family was as if she was dying soon and while in hospital, A few weeks went by and she got discharged from hospital, she's been on lots of medication since relating to her illness, she also has thyroid trouble, anaemia and diabetes.
Since then she's managed to get on with her life, be it with a little pain, and become more frail,
about 2 months ago she began to become very confused! we had to force entry to the home as she didn't know how to open the door, she couldn't turn the television off etc... She's also mainly been bed bound, only getting up to eat or go the toilet.
The confusion is still there, not so bad but it does come in short spells, Last week she was admitted to hospital, she's very frail but has had 6 litres of fluid drained from her stomach as it was very swollen, as is her ankles... She doesn't look very well, her hair is falling out and she's in pain but she's still okay in her self still making jokes and talking.
Went into see the doctor yesterday, she explained that after having the ascites fluid drained last week its starting to build up again so will need to be drained again before she goes home , this is an on-going thing which will need draining every so often..
She also explained that the confusion is down to the liver problem and is a well known symptom, she's done a test to come to this conclusion.
She's also said she's in end stage liver cirrhosis, and she's looking at long months , short years to live.
The doctor is a liver specialist and she reckons she has around 6-12 months as this illness will only get worse...
What can I expect? Whats a rough life expectancy of her? Does the Doctors estimate sound right?...
Around 4 years ago she started vomiting blood, when in hospital we were told she has non alcoholic fatty liver cirrhosis and she is dying, The way it was put to the family was as if she was dying soon and while in hospital, A few weeks went by and she got discharged from hospital, she's been on lots of medication since relating to her illness, she also has thyroid trouble, anaemia and diabetes.
Since then she's managed to get on with her life, be it with a little pain, and become more frail,
about 2 months ago she began to become very confused! we had to force entry to the home as she didn't know how to open the door, she couldn't turn the television off etc... She's also mainly been bed bound, only getting up to eat or go the toilet.
The confusion is still there, not so bad but it does come in short spells, Last week she was admitted to hospital, she's very frail but has had 6 litres of fluid drained from her stomach as it was very swollen, as is her ankles... She doesn't look very well, her hair is falling out and she's in pain but she's still okay in her self still making jokes and talking.
Went into see the doctor yesterday, she explained that after having the ascites fluid drained last week its starting to build up again so will need to be drained again before she goes home , this is an on-going thing which will need draining every so often..
She also explained that the confusion is down to the liver problem and is a well known symptom, she's done a test to come to this conclusion.
She's also said she's in end stage liver cirrhosis, and she's looking at long months , short years to live.
The doctor is a liver specialist and she reckons she has around 6-12 months as this illness will only get worse...
What can I expect? Whats a rough life expectancy of her? Does the Doctors estimate sound right?...
Hi D1on, I'm sorry to hear your Auntie is still so up and down. Unfortunately End Stage Liver Disease is a very unpredictable disease. The liver begins to fail and continues to fail. Sometimes that is a gradual process, sometimes it is a quicker process. Sometimes other organs begin to fail too. Sadly, because her liver isn't functioning properly, her body isn't able to filter toxins (medications, iron, etc.) well, and these toxins can create a build up of ammonia in her blood, which can then cause her brain to be irritated, leading to confusion. I'm sure I'm not using all of the correct medical jargon, but I think I have the gist of it right. As her liver continues to fail, she will have good days and difficult days, she will have days when she is very confused, and perhaps other days when she is less confused, she may have extreme pain at times, and less pain at other times. Overall though the progression will likely include off and on build up of fluids (edema/ascites), off and on increase in ammonia leading to HE symptoms, and eventually (possibly) variceal bleeding (usually in the form of vomiting blood). Overall she is likely to get weaker and weaker, too tired to eat or drink or stay awake much. Overall she is likely to develop some type of infection (pneumonia, kidney, skin, etc.) that her body will probably have trouble fighting.
I continue to pray for you and your Auntie. I'm glad she's in a nursing home where they can manage her pain and comfort.
Keep us posted.
Advocate1955
I continue to pray for you and your Auntie. I'm glad she's in a nursing home where they can manage her pain and comfort.
Keep us posted.
Advocate1955
Update on my auntie...
Since being in the nursing home she doesnt eat too much, one day she seemed to be in absolute agony screaming out, she wouldnt take any pain killers so they had to give her a morphene injection, After that she perked up abit, but last week we had a call to go up as she'd took a turn for the worst, She was lying their with her eyes shut , opening them for about 30 seconds then shutting them again, her breathing had changed and she couldnt talk, she was like this for two days, then she woke up again and ever since has been talking fine albeit abit confused?....
I dont understand how she is so up and down?...
Since being in the nursing home she doesnt eat too much, one day she seemed to be in absolute agony screaming out, she wouldnt take any pain killers so they had to give her a morphene injection, After that she perked up abit, but last week we had a call to go up as she'd took a turn for the worst, She was lying their with her eyes shut , opening them for about 30 seconds then shutting them again, her breathing had changed and she couldnt talk, she was like this for two days, then she woke up again and ever since has been talking fine albeit abit confused?....
I dont understand how she is so up and down?...
I'm glad your Auntie is in a nursing home where she can have full time care. I'm also glad that she's eating and drinking more. At this point, she seems to be doing as well as can be expected. There will still be ups and downs with her HE and her ascites. She may develop skin infections or overall edema. She may develop bleeding varices. These are all things that can happen as her liver failure progresses. The good news is in a place where they can keep her as comfortable as possible.
Advocate1955
Advocate1955
Thanks Advocate, yes she still seems confused but not as bad, must be down to the lactulose, her ascites is definitely still their, and she is in abit of pain,
She seems to be drinking and eating more, cause she thinks if she does that she'll be able to come out the nursing home...
Even though doctors said when she wasn't eating and drinking as much they predict she only has weeks left to live...
She seems to be drinking and eating more, cause she thinks if she does that she'll be able to come out the nursing home...
Even though doctors said when she wasn't eating and drinking as much they predict she only has weeks left to live...
Yes, the HE is still present, even though she's on Lactulose. That is because the liver isn't performing it's important function of filtering all of the toxins. The Lactulose is helping with the symptom of HE, but the liver still isn't filtering all of the toxins. It's good that her edema has gone down, that will help her be more comfortable, since edema can cause so much pain and immobility. It is also an environment for skin and internal infections. However, overall her ascites is still very severe, since it comes right back after being drained so frequently. I think the end is near for your dear Auntie, but it's impossible to say when and how.
I am praying for comfort for both of you.
Advocate1955
I am praying for comfort for both of you.
Advocate1955
Thanks for both your replies! Very helpful!
Advocate, She seems to have ascites all the time no matter how much its drained, I haven't noticed but her edema seems to of gone down... Saying that she hasn't walked any distance now for around 7 weeks,
She's drinking abit more and eating, But still doesn't look good, She is now taking the lactulose so the HE isn't as bad but she is still abit confused, I take it HE is still their even when treated with lactulose?
I don't want to be disillusioned that she's better, just because she's being medicated,
Advocate, She seems to have ascites all the time no matter how much its drained, I haven't noticed but her edema seems to of gone down... Saying that she hasn't walked any distance now for around 7 weeks,
She's drinking abit more and eating, But still doesn't look good, She is now taking the lactulose so the HE isn't as bad but she is still abit confused, I take it HE is still their even when treated with lactulose?
I don't want to be disillusioned that she's better, just because she's being medicated,
COMMUNITY LEADER
D1on I am very sorry to hear about your aunt, it’s great that you have been so supportive for her. Sorry I am just now seeing this thread. Advocate as always has done such a wonderful job responding to your posts, we are lucky to have her. Unfortunately there isn’t much I can add, at this point I think you know you have to face the inevitable and do your best to enjoy the time you have left with her.
“How does it usually happen? Is their chance of going asleep one night and not waking up?”
Your question is one that is often asked and thought about but since the liver is responsible for so many systems in the body there is not just one answer. I think for many often the individual slips into a hepatic coma until they expire. Hepatic Encephalopathy is directly responsible. This is kind of like you mentioned “going to sleep and not waking back up”. Often I refer people to our Grief & Loss community. Here you will find a thread that someone started a few years ago that people come to post their story, perhaps you might find this helpful as well.
http://www.medhelp.org/posts/Grief--Loss/Liver-Failure-and-cirrhosis-death--anyone-go-through-this/show/40139
Keep in mind some of the post are quite old and with medical advancements we have developed better methods for handling the symptoms that come with the final stage of liver disease but in the end best we can do is make sure they know we love them and to feel grateful for having them in our life.
You have my warmest sympathy’s,
Randy
“How does it usually happen? Is their chance of going asleep one night and not waking up?”
Your question is one that is often asked and thought about but since the liver is responsible for so many systems in the body there is not just one answer. I think for many often the individual slips into a hepatic coma until they expire. Hepatic Encephalopathy is directly responsible. This is kind of like you mentioned “going to sleep and not waking back up”. Often I refer people to our Grief & Loss community. Here you will find a thread that someone started a few years ago that people come to post their story, perhaps you might find this helpful as well.
http://www.medhelp.org/posts/Grief--Loss/Liver-Failure-and-cirrhosis-death--anyone-go-through-this/show/40139
Keep in mind some of the post are quite old and with medical advancements we have developed better methods for handling the symptoms that come with the final stage of liver disease but in the end best we can do is make sure they know we love them and to feel grateful for having them in our life.
You have my warmest sympathy’s,
Randy
No, it's not an awkward question, it's an important question.
I'm sure it varies greatly from individual to individual. I only have first had experience with three friends. Their families were with them at the very end, but I have a general sense of how it happened for each. The first was no longer able to walk or move (edema), was greatly confused (HE), and in a lot of pain. When it was determined that there was nothing further that could be done to help him, he was sent home with hospice care and died about two weeks later. They provided pain medication to keep him comfortable. In the end, his liver failed, and his kidneys failed. He vomited blood, stopped eating and drinking, and passed away within a few days. The second was sent home with hospice care and died about 4 days later. She got weaker and weaker and had to be carried to the restroom and such. I don't know the specific details of her passing. The third died about two days after going back into the hospital. She became weaker and weaker, couldn't move (edema and ascites), stopped eating and drinking, turned black and blue and swollen, vomited blood, and eventually her liver and her kidneys failed, and she died. She too was on pain medication for comfort as there was nothing further that could be done to help her.
I hope this helps. From what I understand, confusions, weakness, tiredness, sleeping/coma, bleeding from the esophagus, internal bleeding, swelling (edema, ascites), pain, immobility, lack of eating/drinking.
Perhaps someone else can add more.
Advocate1955
I'm sure it varies greatly from individual to individual. I only have first had experience with three friends. Their families were with them at the very end, but I have a general sense of how it happened for each. The first was no longer able to walk or move (edema), was greatly confused (HE), and in a lot of pain. When it was determined that there was nothing further that could be done to help him, he was sent home with hospice care and died about two weeks later. They provided pain medication to keep him comfortable. In the end, his liver failed, and his kidneys failed. He vomited blood, stopped eating and drinking, and passed away within a few days. The second was sent home with hospice care and died about 4 days later. She got weaker and weaker and had to be carried to the restroom and such. I don't know the specific details of her passing. The third died about two days after going back into the hospital. She became weaker and weaker, couldn't move (edema and ascites), stopped eating and drinking, turned black and blue and swollen, vomited blood, and eventually her liver and her kidneys failed, and she died. She too was on pain medication for comfort as there was nothing further that could be done to help her.
I hope this helps. From what I understand, confusions, weakness, tiredness, sleeping/coma, bleeding from the esophagus, internal bleeding, swelling (edema, ascites), pain, immobility, lack of eating/drinking.
Perhaps someone else can add more.
Advocate1955
Thanks very much for your words advocate and taking the time to reply to me!
Very much appreciated...
Awkward question to answer but when someone does eventually die of this disease..
How does it usually happen? Is their chance of going asleep one night and not waking up?...
Very much appreciated...
Awkward question to answer but when someone does eventually die of this disease..
How does it usually happen? Is their chance of going asleep one night and not waking up?...
Is there a doctor or a nurse at the nursing home? Inform them of the paralysis in her right arm. I don't think this is related to her End Stage Liver Disease.
I'm not an expert in these health issues, so I hope Hector, Nan, or Randy will join in and answer.
Her kidneys are not working well, and that is probably why her urine is so dark even though she is drinking a lot of water.
Her voice is quiet and she whispers, likely because she is weak.
Her confusion and her depression could be the Hepatic Encephalopathy, and she may also be very sad and confused about how she feels and why she's in a nursing home. Is there a social worker or a counselor who could talk with her and evaluate her state of mind? Perhaps the doctor could prescribe something for depression?
Advocate1955
I'm not an expert in these health issues, so I hope Hector, Nan, or Randy will join in and answer.
Her kidneys are not working well, and that is probably why her urine is so dark even though she is drinking a lot of water.
Her voice is quiet and she whispers, likely because she is weak.
Her confusion and her depression could be the Hepatic Encephalopathy, and she may also be very sad and confused about how she feels and why she's in a nursing home. Is there a social worker or a counselor who could talk with her and evaluate her state of mind? Perhaps the doctor could prescribe something for depression?
Advocate1955
Advocate Randy, Hector, or Nan, Please Reply! :)
Been into see her in the nursing home today, Shes drinking quite a lot more, but her urine in the catheter is still very dark?...
She seems to cough and have hiccups quite a lot especially after eating or drinking..
Her voice has been very quiet for weeks now, Some days even just whispering...
She's much more alert now she's in the nursing home, Although no one has told her how ill she is so she's still wanting to go home, She's still confused but she keeps becoming very depressed and bursting into tears? Maybe this is the HE... I've never seen her cry before in my life!..
also she seems to of lost all use of her right arm today, she had no feeling and couldn't move it, When I picked it up seemed to just flop back down...?
Been into see her in the nursing home today, Shes drinking quite a lot more, but her urine in the catheter is still very dark?...
She seems to cough and have hiccups quite a lot especially after eating or drinking..
Her voice has been very quiet for weeks now, Some days even just whispering...
She's much more alert now she's in the nursing home, Although no one has told her how ill she is so she's still wanting to go home, She's still confused but she keeps becoming very depressed and bursting into tears? Maybe this is the HE... I've never seen her cry before in my life!..
also she seems to of lost all use of her right arm today, she had no feeling and couldn't move it, When I picked it up seemed to just flop back down...?
Last I heared off the doctor she gave her weeks to live, she's wrote on a medical form under 3 months...
They've moved my auntie into a nursing home, She's not happy and wants to be home,
As bad as it sounds if shes here in 12 months, it wont be fair on her...
They've moved my auntie into a nursing home, She's not happy and wants to be home,
As bad as it sounds if shes here in 12 months, it wont be fair on her...
These final stages of ESLD are so terrible. My heart goes out to you both. I hope they are keeping her comfortable.
Advocate1955
Advocate1955
Thanks Advocate!,
Went into see her tonight and she looked terrible, didn't say one thing that made sense for the whole hour!, Black urine again, Speaking very quiet, Looks like she's going jaundice on her arms, and she was itching a lot....
Went into see her tonight and she looked terrible, didn't say one thing that made sense for the whole hour!, Black urine again, Speaking very quiet, Looks like she's going jaundice on her arms, and she was itching a lot....
I'm sorry to hear this, and I'm sad that you both have to go through this. Liver failure causes the body not to be able to filter toxins out of the system, and it also causes the body not to be able to properly digest the nutrients in food. This means that while the toxins build up, you Auntie is also not able to get enough of the vital nutrients she needs in order to have energy to do things like sit up, stand up, walk, and talk. I hope that her doctors are doing everything possible to keep her comfortable and pain free.
Advocate1955
Advocate1955
After her being so good day before last when she had fluid drained...
Yesterday went in and she was terrible, Looked very ill, Couldn't speak, was barely whispering...
Yesterday went in and she was terrible, Looked very ill, Couldn't speak, was barely whispering...
You are doing a wonderful job, it is very difficult to care for someone who is slowly slipping away. The days that she is more lucid, tell stories, laugh, enjoy your time together.
I wish you and your auntie well.
I wish you and your auntie well.
It's hard to say D1on. Her liver is failing, and she will die of liver failure, but it's hard to say how many days or weeks or months she will live and how many times she will need to have fluid drained or other symptoms treated. I hope she is comfortable and not in pain. Randy, Hector, or Nan, can you answer D1on's question a bit better than I can?
Advocate1955
Advocate1955
went into see her today,
she was having her stomach drained once again, that said her mind was a lot better from yesterday and the urine had gone yellow?
I take it these are because she's being drained and these symptoms will be back next week?...
she was having her stomach drained once again, that said her mind was a lot better from yesterday and the urine had gone yellow?
I take it these are because she's being drained and these symptoms will be back next week?...
Hi,
Glad to hear from you again.
Weeks sounds more likely than months based on everything you have shared with us so far. That is what I thought when I first read your posts.
The hospital should be doing everything possible to keep your Auntie comfortable right now. They should be giving her medication for any pain that she might have. They should be doing whatever they can to keep her mentally comfortable. Her confusion, wanting to escape, or odd/unusual behavior is the affect of her body's build up of toxins. These toxins are producing ammonia which is building up in her blood stream and having an affect on her brain. I hope her doctors can help her be calm and less frightened or agitated.
The dark urine is another symptom of End Stage Liver Disease.
Advocate1955
Glad to hear from you again.
Weeks sounds more likely than months based on everything you have shared with us so far. That is what I thought when I first read your posts.
The hospital should be doing everything possible to keep your Auntie comfortable right now. They should be giving her medication for any pain that she might have. They should be doing whatever they can to keep her mentally comfortable. Her confusion, wanting to escape, or odd/unusual behavior is the affect of her body's build up of toxins. These toxins are producing ammonia which is building up in her blood stream and having an affect on her brain. I hope her doctors can help her be calm and less frightened or agitated.
The dark urine is another symptom of End Stage Liver Disease.
Advocate1955
UPDATE:
Told last week her prognosis has gone from months left to live to maybe weeks...
She's still confused but has suddenly became very alert and wanting to escape from the hospital and get home, she even fell last week trying to get out the bed to escape!...
The urine in her catheter looks black!
Told last week her prognosis has gone from months left to live to maybe weeks...
She's still confused but has suddenly became very alert and wanting to escape from the hospital and get home, she even fell last week trying to get out the bed to escape!...
The urine in her catheter looks black!
Your Mom did a great job raising you. I'm sure your husband and son understand your need to be with her at this time. May you have some quiet ,good moments with her. You are being a good daughter. My prayers are with you at this difficult time.
Nan
Nan
I too share the same misfortune. My Mother is in the hospital diagnosed Friday with Cirrhosis of the liver and kidney failure. She is 85 and they are letting her go home tomorrow. She lives upstate NY in Watertown, and I live in Florida. I have family (brother sister and daughters) that all live up there but I need to be with her in the comfort of her own home and to be able to take care of her. I feel your pain. I suffered in 2008 when my Dad was dying with stage 5 brain tumor that was cancerous and no treatment available. Now I feel like dejavu all over again. My husband and 14 year old son have to do without me while I be with her. Please pray for her and I will keep your Auntie in prayer too. My Mom's name is Judy. Thank you and God Bless.
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