End stage liver disease

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Bee83
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 2/26/2010 10:52 PM (GMT -7)   
My mother is 54 and she's currently in the ICU due to alcoholic ESLD. She's in pretty bad shape too. Ammonia level is high, kidney function down, blood infection and she bleeding really bad from her nose too. Just one big mess. It's just kind of devastating to see how quickly her health deteriorated. I know the long term prognosis for this is bad especially since she currently isnt eligible for a transplant, but I'm just wondering what are the odds of her recovery even a little from this stage? She was just admitted to the hospital almost 2 weeks ago and it seems she's been on the decline every since.

Has anyone on here ever had a loved one pull through this phase? I know this will end up taking her from me but I just hate to see her suffering like this. I can tell she's fighting it and she's fighting hard. The doctor called us in this morning when i saw her I had a breakdown crying uncontrollably she (my mom) gave me this look that I will NEVER forget as if she wanted to ask me "why are you crying like that?"

The doctors were asking me about her resuscitation status. That's a hard choice to make but it seems like they're telling you "it's your decision" but they're telling you all the negatives with it trying to get me to opt for "DNR"...which is hard because the first night she was admitted they asked me about resuscitation and she heard them her response was "please do"...she's so scared herself.

Post Edited (Bee83) : 2/28/2010 6:09:05 PM (GMT-7)


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 2/27/2010 1:47 AM (GMT -7)   

Bee, I have been going through the same with my mum who is 62. she has been drinking heavily for years but i would say her health started to badly deteriorate about three years ago.

she has been seriously ill many times with everything relating to esld.I too have been asked about the DNR order, which is a hard thing to be asked.

As far as the alcohol is concerned my mum is not strong,totally helpless.but she is so strong in many other ways.she has came through so many things in hospital, i am surpised she is still here.

i have been through so much, most important thing is get educated about the disease, you could be in for a long haul. and yes, even though your mum is soi lthere might be a small chance of recovery for your mum if she quits drinking. try and share the burden with family, do not take it all on yourself. look after yourself, everyone here on this forum has been through this or similar, this is a great support which will help you so much.

anytime you need to talk i am here


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/27/2010 11:40 AM (GMT -7)   

Bee, welcome to the forum.  You will find a lot of information and support here.  Look at some of the older posts dealing with alcoholism and liver disease.  There is also some good info in the Hepatitis Resources folder at the top of the page (it's not just about hepatitis, but liver disease in general.) 

I would say that if they are able to stabilize your mom and she never drinks another drop of alcohol, she has a chance of recovery.  The most serious things right now are bleeding, and sepsis (blood infection.)  If her kidneys really start to fail, that's an indication that her body is shutting down.  It's a good sign that she is fighting.  As for the DNR order, that's a hard call to make if she doesn't have a Living Will.  If it seems that they are doing everything possible for her and she continues to decline, that might be the sign to go ahead with the DNR.

Big hugs,

Connie


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


Bee83
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 2/28/2010 6:07 PM (GMT -7)   
Thanks for the responses. Last night I received a call around 3 in the morning of course when I saw that it was the hospital my heart started racing immediately but earlier during the day we had a meeting with the doctors and we were basically told that the first step with the dnr order is not inserting a breathing tube if her breathing becomes too labored. I told them I couldn't make that decision and that I needed time to think. The 3am call was saying that she'll probably need the tube. My sister told them to go ahead and do it. Last night after they put her on the ventilator she wasn't breathing on her own anymore the doctor said it was more than likely from being sedated but today she started taking breaths on her own again. She's still fighting.

Once again thanks everyone for the responses and I'll continue to update throughout this process maybe someone else can know what to expect after reading what im am going through.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/28/2010 7:06 PM (GMT -7)   

Thanks for the update, Bee.  If they are unable to wean her from the ventilator, that's a bad sign.  If she is still able to take breaths on her own, that's good.  However, the longer she is on a ventilator, the less chance there is of her getting off.

Please do keep us posted.

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 2/28/2010 9:35 PM (GMT -7)   
Hello Bee and welcome. Sorry that your mom is doing so poorly. Hang in there. We are here when ever you need us.......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.


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 3/1/2010 1:15 AM (GMT -7)   
So sorry about your mum.its good that she is still fighting even if it is only a little better than nothing. She might be stronger than you think.
Take comfort from your family right now as you will need all the support you can get.

Bee83
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 3/3/2010 11:29 AM (GMT -7)   
So after weighing all options we are looking into the possibilities of having a living liver donor. It seems that's that's only hope right now and even with condition being so critical right now we don't even know if that option is available to her.

I just feel so sad and helpless. If all else fails, we just have to make her comfortable and let nature run it's course. It's just so sad to know that I'm losing my mom and there's nothing that I can do to help her. cry

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 3/3/2010 12:00 PM (GMT -7)   
good luck on that. my moms hospital said that wasnt an option for her. im sorry but your mom may be declining, i am being very blunt because i know the heartache that is headed your way. if they do one it will destroy the healthy liver very quickly so that may not be an option. i lost my mom this past thanksgiving(three days before) and she had to be hooked to tubes. i hope she pulls through but i do hope you prepare yourself although t here is no preperation for a loved ones passing
Bee83 said...
So after weighing all options we are looking into the possibilities of having a living liver donor. It seems that's that's only hope right now and even with condition being so critical right now we don't even know if that option is available to her.

I just feel so sad and helpless. If all else fails, we just have to make her comfortable and let nature run it's course. It's just so sad to know that I'm losing my mom and there's nothing that I can do to help her. cry

The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


Bee83
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 3/3/2010 12:35 PM (GMT -7)   
Yeah I know it's one of those..."pray for the best, prepare for the worst" things. In all reality I know that I'm going to lose my mom to this disease. I just need to come to terms with that knowledge.

worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 3/3/2010 12:44 PM (GMT -7)   
honestly i think that is the hard part of this disease. im sorry i was so blunt but when my mom was like that i hated the doctors for sugar coating it. luckily her nurse gave it to me straight when it was just me. iknow she could have gotten in trouble but thats how i wanted it. i thanked her for it too.
Bee83 said...
Yeah I know it's one of those..."pray for the best, prepare for the worst" things. In all reality I know that I'm going to lose my mom to this disease. I just need to come to terms with that knowledge.

The only person who can make you happy is you. Be your own self and love who you are because each and every one of you are wonderful for who you are


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 3/5/2010 3:43 PM (GMT -7)   
Bee how is your mum doing since they put in her tube? I hope you are holding up well. its a wee bit like being in limbo,you do not know what is going to happen only time will tell.
Worried girl, yeh those doctors and nurses do tend to sugar coat things, i get so fed up with it and like it when you can get a hold of someone who will talk straight to you. My mums case is so impossible as she has been in and out hosp so many times, they always put her in a different ward with different staff and you have to start all over again. it so frustarting.....

ailsa
Regular Member


Date Joined Nov 2009
Total Posts : 35
   Posted 3/5/2010 7:04 PM (GMT -7)   
Bee, I am so sorry to hear what you are going through. If the infection is cleared up, that will improve your mom's condition. That would help with her ammonia level, as well as lactulose. I know she's on a vent, but does she have a feeding tube? If not they should give her TPN, through her central line. and if her kidney's fail, the option of dialysis will buy some time. I'll pray for you.

"Never give up on anyone, miracles happen everyday"

Bee83
New Member


Date Joined Jun 2009
Total Posts : 15
   Posted 3/7/2010 7:21 PM (GMT -7)   
My mom passed away yesterday @ 1:25pm cry
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