85 year old aunt, End stage liver failure...

[D1on]

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?...

[D1on]

Also forgot to add...
Cant increase her water tablet dosage as her kidneys are on border line of failing...

Though today she seemed in good spirit...

[HectorSF]

Not being your auntie's doctor, sadly the doctor is probably right. Liver disease only gets worse over time as the liver fails.

Ascites and Hepatic Encephalopathy are common complications of End-Stage Liver Disease.

Here is some information about Ascites from the Cleveland Clinic.
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hepatology/complications-of-cirrhosis-ascites/

Here is some information about Hepatic Encephalopathy (HE...
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hepatology/hepatic-encephalopathy/

Here is some information of End-Stage Liver Disease
MEDSCAPE  MULTISPECIALTY
"The Transition to End-of-Life Care in End-stage Liver Disease"
http://www.medscape.com/viewarticle/804461_1

I am very sorry to hear of your auntie's prognosis. Thankfully she has a good spirit and her liver doctor sounds like she will help her all the she can. I wish her strength and comfort. Be well.
Hector

[hepcandme]

Your auntie sounds like a trooper! 85 years old is a good long ride.
If it were me, I wouldn't want to take any uncomfortable and unnecessary measures although it does sound like your auntie needs some round the clock care because of her confusion and her inability to care completely for herself. Has she spoken to you about her care? Does she want to stay in the hospital or can she have you or a live in caregiver with her when she goes home?
She is so fortunate to have caring family around and a good medical team. I'm sending good thoughts to all of you
We aren't doctors here on the forum but Hector has proffered some good information. Since most doctors are reluctant to make any calls about how much time someone has left, the fact that this doctor has done so makes it clear that she is trying to be honest and thoughtful to the family so I see no reason to doubt her prognosis. Take care of yourself too

[D1on]

She'll be looking at getting carers three times a day once home and il go in once a day, I was very depressed yesterday, Turned a job down just so I can care for her,
That being said she was very bad before she went in hospital and according to the doctor she'll be the same and just going worse.

Wouldn't want her to be here for years suffering...

[Advocate1955]

Your auntie is very lucky to have you.  She will probably need full time care from here on.  As Hector said, she has End Stage Liver Disease, which means that her liver is failing, and although her doctor was able to manage her symptoms and treat her for the past 5 years, she has now reached the point where the liver is just not able to perform it's normal functions.  That is why her ascites has worsened, and that is why she has Hepatic Encephalopathy (HE), confusion and disorientation.
None of us are doctors, so we cannot say how much longer she has to live, but given her current symptoms, perhaps a couple of weeks to a couple of months.  This is a question to ask her doctor.
In the meantime, hopefully your auntie has communicated all of her final wishes, has updated her will, and has given you or another family member her durable power of attorney, so that you or someone else in the family can make medical decisions for her when she is no longer available.
You ask what to expect.  I haven't experienced this first hand in my family, but I have experienced three times with friends:  everyone's path with ESLD is a little bit different, but some things to expect might include increased sleepiness to barely waking, decreased appetite to not taking anything in, decreased mobility due to ascites and edema, increased confusion to erratic behavior due to HE, kidney failure, and vomiting blood due to variceal bleeds.  Since she will be at home, she will have hospice care, and her hospice caregivers will explain everything, answer questions, help her stay comfortable, and support you and her.
I'm sure this is very upsetting and frightening, and I certainly don't want to add anymore fear or distress.  I am not a doctor, so I have no way of knowing exactly, but in general, these are the things that happen as the liver fails and the person passes.
Be there for your auntie, just sit with her, take care of her, and let her know that you're there.  She is suffering quite a bit right now, but the doctor and the home health care team will help her be more comfortable.
Prayers to you and your auntie.
Advocate1955

[Advocate1955]

Sorry, I didn't read that the doctor had said specifically 6-12 months.  Obviously the doctor is the expert and knows better than I would.  The reason I said a couple of weeks to a couple of months is because that was what I observed with my three friends who passed from ESLD.  Once they had reached the point where they had ascites, Hepatic Encephalopathy, adema, lack of appetite, and kidneys starting to fail, the time frame was between 1-3 months for each of them.  You might ask the doctor this question again the next time that your aunt sees her as of course her prognosis will change as her status changes.
Advocate1955

[D1on]

Thanks for your kind words!
to be honest the doctor said 6-12 months, could be a little longer could be a little less...
But definitely used the words short years, long months...

The reason I asked is that with me being only 22, for the past months its been very hard work, Sounds harsh but if she was going to be here for years more she'd of been better in a nursing home as I wouldn't of been able to cope,

If the doctors life expectancy is roughly right, I will do my best and make her as comfortable as possible once home...

[hepcandme]

My heart goes out to you. It certainly is a difficult situation for someone who is so young to be dealing with. The hospice folks will be invaluable - not only to your auntie but to you as well. When my mom reached the end of her life, we made her as comfortable as we could but did not take extraordinary measures to prolong her life. She died peacefully in her own bed and I never regret for a moment the decisions that we made on her behalf. Reach out to others, get counseling and you will find the right path
Thinking of you and sending good thoughts your way

[Advocate1955]

It doesn't sound harsh.  It sounds realistic.  You want the best for your Auntie, but you have to be realistic.  At age 22 you have many things to be thinking about, completing your education, finding a career path, learning and growing...I can't imagine the stress and heartache of caring for someone with ESLD let alone at age 22.  I hope you have some good supports in your life.  If not, you may want to find a support group for caregivers, hopefully one specifically for caregivers of people with ESLD, so that you can find a group of people who can understand what you and your Auntie are going through.  Believe me, none of your 22 year old friends will understand.  Keep posting here on this forum D1on.  We are here to answer questions, if we can, and to support you.
Advocate1955

[D1on]

Thanks very much,
Shes still in the hospital at the moment, Her stomach's swelled again what she describes as like an egg shaped swelling?...
Shes still talking a lot, but seems to be in quite abit of pain.....

[D1on]

Though today, She gave me a bit of tissue and told me to put it in my pocket and in the bin when I get home,
When I got home I opened it and their is two little pills, One white, and a littler one which Is a cream colour...

She also gave my nan two pills last night, Different to the ones I had, the ones last night are slightly larger...

Think I may have to go against her wish tomorrow and tell the nurse...

[hepcandme]

you must tell the staff immediately! It may be the HE that is making your auntie a bit paranoid but the pills are to help her and ease her pain

What a challenging time for your family!
Let us know if there is anything we can do or if you need anything

[D1on]

Today I went into the hospital to see her both this afternoon and tonight,
On both visits she was asleep when I arrived, Lady in the bed opposite said she'd been asleep all night and day,
When she woke up her finger nails looked very yellow, and around her lips were very yellow, Dunno if its coursed by medicine?

She was also very very confused as if the HE is kicking in again....

Sad, as yesterday she seemed rather good....

[nan535]

Your auntie is very blessed to have someone so young who cares so much about her.  This will be a very difficult road for you, however long it is.

Does your auntie have Medicare insurance. If so, this link may provide some helpful information to you.  
http://www.medicare.gov/Publications/Pubs/pdf/11361.pdf

Please seek out a support group. Caring for someone with ESLD can be very draining and stressful.  I am amazed that such a young age, you are stepping up to help her. As I said, she is blessed to have you.

Nan

[D1on]

Not too sure as regards to insurance, im in the uk though...

is their chance of my auntie passing away in hospital? the way she seemed yesterday wasn't too good at all but the day before she was okay,

they don't seem to want to be letting her out...

[Advocate1955]

Ask her doctors what the prognosis is.  The fact that she is slipping into deeper and longer sleep periods is not unusual with End Stage Liver Disease.  I'm not sure if her deep sleeping is being caused by meds they have her on or by her liver disease or both, but the doctor can tell you.  Jaundice is another complication of advanced liver disease, but I don't know if the yellowing of her nails and lips is jaundice.  Another question for the doctor.  And of course the egg shaped swelling is the ascites, another complication of advanced liver disease.  Ask her doctor when he expects to release her and what level of care she will need at home, and also how long he expects her to live, so that you can prepare.  Ask if she will have home health care to assist you in caring for her.
None of us knows her exact status, only her doctor does, but I feel like she may pass soon.  It's impossible to know without asking the doctor.
Advocate1955

[D1on]

---
went in today to see her, asleep again, been asleep all day,
Nurse said shes having another blood transfusion either tonight or tomorrow, even though she had one around 3 weeks ago, seemed very confused again and quite shakey...

[nan535]

The confusion and shaking are symptoms of hepatic encephalopathy.

http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm
Excerpt:
Symptoms many begin slowly and gradually worsen, or they may begin suddenly and be severe from the start.

Symptoms may be mild at first. Family members or caregivers may notice that the patient has:

Breath with a musty or sweet odor
Change in sleep patterns
Changes in thinking
Confusion that is mild
Forgetfulness
Mental fogginess
Personality or mood changes
Poor concentration
Poor judgment
Worsening of handwriting or loss of other small hand movements
More severe symptoms may include:

Abnormal movements or shaking of hands or arms
Agitation, excitement, or seizures (occur rarely)
Disorientation
Drowsiness or confusion
Inappropriate behavior or severe personality changes
Slurred speech
Slowed or sluggish movement

Patients with hepatic encephalopathy can become unconscious, unresponsive, and possibly enter a coma.

Patients with hepatic encephalopathy are often not able to care for themselves because of these symptoms.

You should definitely have a talk with her doctor so you can plan how to best handle her end of life wishes.
I'm so sorry that you are going through this. I know it must be very hard for you.

Big hug,
Nan

[D1on]

The doctors already said she has hepatic encephalopathy,

Don't know whats going to happen...

[Advocate1955]

No one really knows. She might stabilize, come home, and be a bit better for a few months and then worsen again. She may have months of episodes where she's improved and then sick again. Or she may steadily worsen over the next few days or weeks and pass. She will eventually pass from her end stage liver disease, whether it's sooner or later, no one knows. That is one of the sad and terrible things about liver disease. Another sad and terrible thing is the suffering that people with end stage liver disease go through. I will pray for comfort for both of you. Keep posting herd, we will be here for you.

[D1on]

Went to visit today,
Still very weak, gone a lot weaker since been in hospital, very quiet voice, and still confused,

Hope she isn't let home in this state!

[Advocate1955]

What did the doctor say?

[D1on]

Still not spoke to a doctor,
Apparently need to make an appointment,
Last time i spoke to a doctor was a few weeks ago and she confirmed this is end stage liver disease and she wont get any better,
Since then she seems to of took a down turn in hospital and is very weak and confused...

[Advocate1955]

I really think it's important for you to talk to her doctor again, so you can have some idea of what to expect.  If you and your Auntie haven't already done so, now would be a good time for her to give you her durable power of attorney, and, if possible, make you her guardian in her will in case she becomes incapacitated and can no longer make her own decisions, so that you have the legal authority to make decisions for her.  If she hasn't already done so, she should have a health care directive that states what her wishes would be should she become so ill that she needs life support.  Most people write in their health care directive that if there is no hope to recover they do not wish to be on life support.  Hopefully she has a will, it's updated, and you know where it is.
You have a lot on your plate for such a young person.
The confusion may improve as they get her more stabilized, but in the long run, her liver will continue to fail, she will continue to get sicker, and she will have additional bouts of confusion.
If/when your Auntie comes home from the hospital, she will need care.  She'll need help with taking medications at the right time, drinking the right amount of fluids, eating a liver friendly diet, getting to doctors' appointments, etc.  She will continue to decline in terms of weakness, fatigue, swelling, confusion, and perhaps have other medical complications such as bleeding or kidney problems.  She'll need help with all of her legal, financial, and medical matters.
Income tax is due tomorrow.  Has your Auntie already filed her taxes?  If not, someone should file for an extension for her postmarked or filed electronically by tomorrow.
Does she have bills that need to be paid?
Does she have an attorney and/or a financial advisor and/or an accountant who help her with some of these matters?  Perhaps you can get in touch with them and let them know what's going on and get their advice.  If not, the hospital will have a social worker who may be able to give you some advice.  
It is time to start planning for and preparing for the end of her life, whether it's soon (in the next few weeks) or later (in the next few months).  You want to make sure that she is as comfortable and pain free as possible, that you find out what will be needed to care for her if/when she comes home, that you know and can take care of her final wishes, and that the paperwork is in place for you to be able to take care of legal and financial matters for her.
Keep us posted.
Advocate1955