End Stage Liver Disease

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Jolie
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Date Joined Aug 2010
Total Posts : 5
   Posted 8/16/2010 9:55 AM (GMT -7)   
My dad was diagnosed with esld and liver cancer about a month ago (he didn't get it properly checked out so now it's too late) and has been in hospital for about three weeks until last week when he was allowed home.  The specialists did all the tests and scans they could and even took a biopsy to see if the liver cancer was secondary - results not yet back.  The diagnosis was not good.  They gave him just a matter of weeks to live and we're dealing with this now.  He has carers who come three times a day and he's at home.  He's not in any pain but has a lot of fluid in him stomach, legs and feet, symptoms of the disease.  For the past week he's barely eaten, can't swallow very well and is asleep pretty much all the time.  Today he started mumbling and saying things that were random but clearly from the past.  I was told that this would happen but I hope he's not in pain.  I want him to be better but know it's impossible, there is no telling how long he will live, I'm upset for my mum who's now looking after him aswell.  Is anyone going through the same - what was the end like, I need to prepare my mum. 
 
Also, thanks to everyone on the forum, it certainly helps me to read the threads to see I'm not alone. blush

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/16/2010 10:20 AM (GMT -7)   
Jolie, welcome to the forum. I'm so sorry that your dad didn't get tested sooner. He could've definitely prolonged his life. There are so many variables to ESLD that it is impossible to say how long a particular person has left. There is a lot of information in the folder at the top of the page entitled Hepatitis Resources about what to expect. However, the end is different for everyone. From what you've said, it's possible your dad will slip into a coma and pass on peacefully.

We have more caregivers here than patients, so you will receive a lot of understanding and support here.

Big hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/16/2010 4:39 PM (GMT -7)   
Jolie as Connie said hard to tell... Mike died April 22nd... and had been given six months.. he lived 3 months and 22 days... he died from other complications.. but the liver cancer was what gave him the six month time... he had ESLD and liver cancer... he was confused... and had a lot of fluid also..it was quick from the time took him in.. 24 hours.. pneumonia and blood pressure crashing... can't tell... take care of yourself Jolie... prayers ur way... Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Jolie
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Date Joined Aug 2010
Total Posts : 5
   Posted 8/17/2010 1:43 AM (GMT -7)   
Thank you so much for your kind words and thoughts.  The site has been very useful in helping me understand this all better.  Today he is worse, drifting in an out of sleep and very uncomfortable.  He appears to be regressing to the past, not knowing who we are but we don't take that personally!
 
I'll keep you up to date with what is happenning, I think everyone has done their best for him and I too pray for that he passes on peacefully.
 
Jolie
 
 

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 8/17/2010 12:30 PM (GMT -7)   

Jolie, do they have him on diuretics such as Lasix, and Lactulose for increased ammonia levels which affect mental statsus? 

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Jolie
New Member


Date Joined Aug 2010
Total Posts : 5
   Posted 8/17/2010 2:06 PM (GMT -7)   
Hello, he's on Spironolactone which I believe treats this. We called the nurses today though as he was uncomfortable and distressed and they have put him on a diamorphine syringe driver which has made him very 'out of it'. We were considering a hospice if he was distressed but as he's so weak now, we've decided it's best for him to stay at home. The nurses think it's a matter of a couple of days now. We are just praying that he is not feeling pain and is not aware of what is happenning to him. They have said that the last sense to go is his hearing so we're talking to him and keeping upbeat.

Thanks again for your support, I'm staying strong for my mum.

Jolie.

TraceVT
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Date Joined Aug 2010
Total Posts : 4
   Posted 8/17/2010 4:23 PM (GMT -7)   
I'm kind of in Jolie's shoes right now, but with an aunt. We've all known she's an alcoholic and despite many times telling us that she's stopped, she never did. Now she is in stage 1, borderline stage 2 of the encephalopathy. On top of that, she also has hemochromatosis (genetic condition where the organs store iron to unsafe levels) and Lyme Disease. Today was the day her doctor said he holds no hope for her. I'm still trying to figure out how to support my Mom who blames herself for not getting her sister to stop drinking. I know there was no way she could have, but because when her parents died they asked her to watch over her sister.

My issue is that the doctor really has written her off. My uncle's well into his 70s with his own health issues and can't care for her at home. So he keeps bringing her home per hospital instructions and then going right back because her ammonia levels spike and she becomes combative, delusional (to the point she's called 911 and claimed she's been raped) and refuses to take her meds. Because she's combative, no facility will take her. Home health nurses can't do the IVs which seem to do the best job at keeping her calm and non-delusional. It's frustrating at best so I'd love to hear how others have gotten past the No-Hospice wants to deal with those kind of problems...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/17/2010 5:34 PM (GMT -7)   

TraceVT, welcome to the forum.  I am sorry you find yourself in a similar position as Jolie.  To both of you, I would suggest calling Hospice.  They do come to the home.  Towards the end, they will provide around-the-clock care and offer support to the family, including respite care so that family can take a break and go out to shop, a movie, etc.

Trace, I suggest you copy your post here and paste it into a new thread, if you know how to do that.  It's always best for new members to start their own topic, so as not to "fall through the cracks."

Jolie, spironolactone is usually given together with Lasix.  It's a mild diuretic.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/17/2010 7:33 PM (GMT -7)   
Hello Jolie and TraceVT and welcome to HealingWell. I am so sorry that you and your families have to deal with this horrible disease.

I agree with Connie .......call Hospice.....ask their doctors for the referral. They are a wonderful organization which I have unfortunately had the opportunity to use twice.
They also provide hospital beds if needed, oxygen, meds and anything that is needed to keep the patient comfortable.

And yes, I also believe that the hearing is the last to go. Tell your loved ones how much you love them. Even if they go into a coma........keep talking to them.

Take care.....thoughts and prayers.........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/17/2010 9:31 PM (GMT -7)   
my prayers are with you both during this time.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

Jolie
New Member


Date Joined Aug 2010
Total Posts : 5
   Posted 8/18/2010 4:56 AM (GMT -7)   
Trace, I understand what you're going through. It is so hard to go through and my mum is so upset but she knows deep down that there was nothing we could have done. We told my dad so many times to stop drinking and he didn't.

Last night we had to call the nurses to adminsiter a further dose of diamorphine and he settled down after that - what a long night though. We have discussed the hospice with the nurses and agree that it is the right thing to do. With my dad though, he has now only been given 48 hours and is far too weak to be moved. The nurses have agreed that he should stay at home now and we're having an nurse stay over night to help him. They will bring all they need to make him comfortable.

It hurts to see him look so fragile and not be able to respond to us. He can't talk or move now and my mum finds it hard to see him as he looks so old (he's only 63).

However, we must stay strong as we have a lot to deal with over the next few days. Keep strong too.

Jolie.

TraceVT
New Member


Date Joined Aug 2010
Total Posts : 4
   Posted 8/18/2010 5:28 AM (GMT -7)   
Jolie, It is hard. I'm three states away with kids about to return to school and that doesn't help. Then they seem to change her meds daily, so I'm always researching side effects and contraindications. But she's on lactulose, Prednisone and a diuretic. The hemochromatosis ruined her pancreas, so she's diabetic too and they're forever switching her insulin.

I spent hours last night trying to find hospice care, but the deal is no one wants to take on a patient with a history of calling 911 and accusing rape. I guess her call created a hospital lock-down when police arrived and that's making it near to impossible to find anyone who will take her on. So for now, she's staying put in the hospital and as of last night, the doctor said he doubts she'll make it and that my uncle should start thinking of plans for after...

TraceVT
New Member


Date Joined Aug 2010
Total Posts : 4
   Posted 8/18/2010 7:27 AM (GMT -7)   
Thanks to everyone else for their input. I don't honestly know how much I'll be around as I have my own work and life to attend to on top of this.

Suggestions of hospice are appreciated, but so far not going well. She's on IV meds that most nurses we've spoken to state they cannot give, only a doctor can. The doctors have stated they can't come up with a place that will take my aunt because of her combative nature. I'm looking into making the trip this weekend, so we'll see what happens if I can. I'd rather start hearing first hand from the doctor to see exactly what he's saying.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2010 11:18 AM (GMT -7)   
Trace, if she doesn't have much longer and the hospital is willing to keep her there, it might be the best solution for everyone.

Hugs,
Connie
hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Jolie
New Member


Date Joined Aug 2010
Total Posts : 5
   Posted 8/18/2010 11:50 AM (GMT -7)   

I agree, it might be best to leave them be where at least they won't be further traumatised by any further movement.

We did not move my dad to the hospice and he passed away today at home.  I believe he did this peacefully and to make us suffer less.

Bless him and I hold hope that your relatives will be comfortable too.

Many thanks for the support.

Jolie


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2010 1:24 PM (GMT -7)   

Jolie, so sorry for your loss, but pleased to hear that he went peacefully at home.

Big hugs to you,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 8/18/2010 10:13 PM (GMT -7)   
prayers continue to be with you Jolie... sorry for your loss... it's not easy...

There is no pit so deep that He is not deeper still... Corrie Ten Boom

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/18/2010 10:22 PM (GMT -7)   
(((Jolie)) I am so sorry. Please accept my sincere condolences on your dear father's passing.

Lot's of thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

pinkiusfloydius
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/19/2010 7:50 PM (GMT -7)   
i'm a full fledged devoted drinker of beer that resulted to my diagnosis of end stage liver disease. I've always  knew that by drinking will kill me as with the reality of four family members have died of cirrohsis. Now, I'm one of them. Not dead, yet. Just want to know that I've done some things to help myself, at first. Now. I've picked up once again and have accepted the demise of my selfish choices. I'm not wanting any type of solutions or help for my disease. I would simply like to know, only because I never asked about my family members what to expect when my liver decides to shut down on me. Will it hurt? Will it be a long process? Questions like that. I've accepted what the doctors have told me, however, I just would like to know a run-down of how and what to expect when I've reached that point when "too much" was taken. Thank you for responding to anyone who may...

pinkiusfloydius
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/19/2010 7:52 PM (GMT -7)   
Nothing but the best for you.
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 8/19/2010 8:41 PM (GMT -7)   
Pinkiusfloydius, Don't give up. It may not be too late for you. It you stop drinking the damage to your liver could stop and you would have many years left. Liver disease is a very ugly thing. My husband has been dealing with it for around 5 years and it has been very hard on him and my whole family. Don't just accept and continue to drink. Fight! It is really unfair to your family if you don't try.
Butterflythree
 
There is always hope!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/19/2010 9:05 PM (GMT -7)   

Pink, as a sober alcoholic, I can only echo what Butterfly has said.  Please--if you can't stop drinking on your own, go to AA.  It can literally save your life.

Also, read the information in the folder at the top of the page entitled Hepatitis Resources.  It deals with ESLD, not just hepatitis.  Decide if you want such a horrible death.  You DO have a choice.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 8/19/2010 9:07 PM (GMT -7)   
Well, it is a way to commit suicide, slowly.
"No good deed goes unpunished."

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 8/19/2010 9:14 PM (GMT -7)   
Hello pinkiusfloydius,
If you want to continue to be selfish and die sooner than later, here's some of the things that will or may happen.
You will experience encephalopathy. It's high ammonia levels which cause you to get really goofy and not know what the heck you are doing. It could get so high that you go into a coma and die. (That's the easy way.)
You may experience seizures or strokes.
You may get liver cancer.
Your belly,scrotum, legs or feet will probably swell so bad that it will make it very hard for you to walk and or breath.
Pain is a possibility........actually more like a reality.
And if all that is not bad enough........you may have a bleed out. Where your blood starts seeping out of your veins and out of every orifice in your body.

All that and more, you have to look forward to by being selfish and not caring about yourself or your family. Do you really want to continue to drink and experience all that?

Life is not easy for anyone by any means. But it is a gift from God. And it's worth fighting for.
Myself, and my granddaughters still cry 3 years later because my husband was too selfish a little too long.

If I sound harsh I am sorry, but your post hit a sore spot tonight.

Thoughts and prayers.......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/20/2010 11:35 AM (GMT -7)   

PG, thanks for telling it like it is!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland
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