Living and Caring For Someone With End Stage Liver Disease

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LighninSilk
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Date Joined Sep 2008
Total Posts : 7
   Posted 9/28/2008 7:30 PM (GMT -7)   
I don't even know where to start... But I need someone to talk to...

My grandmother has end stage liver disease... I known for awhile she had liver problems but she has kept them from us or just not told, She always taken care of us.

Lately she been in and outta the hospital these past few months, with some really good scares in there, I guess i just been playing blind to the fact of all her medical problems, because there a whole whack of them, but as the time goes by, I can no longer play blind to the fact of what is inevitable.

She is the End Stage Liver Disease, I'm sure it just the beginning ( i think) i Google it and read some of the article online, the most things that come up are about Kidney Failure and it being down hill from there and she not there at that stage,

I don't wanna dance around the question, but what kinda of life expectancy are we looking at, without a transplant, and I pretty sure we are a far ways from evening being fit to be a candidate, and even if she was fit, the wait cant be unbelievable long, ( I know this from another family member waiting for a liver transplant and she been waiting forever)

There been so many hospital visit in the past months, and there so many other things wrong with her, I just don't know... and I haven't really asked the doctor too much yet... I want know what is coming my way, I am crazy to be thinking the worst is starting... ( As much as I wish I was I don't think I am )

I'm in the role switching spot, where I am know the caregiver, A caregiver to a women has done so much for e in my life... she been my rock... I don't expect to get the answer im looking for here... I'm not even sure of all the detail ... this Liver disease ( and actually taking a look at it ) is all very new to me .

The Basis of all this is... I dont wanna play blind to the fact.... waste the time do have with her, thinking ahh she be ok.... because visit and visit seem to get worse... maybe im rambling for nothing.... but i hope someone hears me ....

~Feeling Scared and Alone ~

mer
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Date Joined Aug 2008
Total Posts : 613
   Posted 9/28/2008 7:55 PM (GMT -7)   
LighninSilk-

First of all....welcome to the forum! You will find a community of loving, caring knowledgable individuals here!! I am so sorry you are havin to watch your grandmother go through this! Do you know what kind of liver disease your grandmother has???

Liverr disease affects everyone differently, and there is no specific "timeline" for how long you have.....I know that is not what you wanted to hear, but unfortunately....is is different for everryone. There are several topics posted, just below this thread that address end stage liverr disease as well as some of the other issues surrounding it. I would encourage you to read through those......

Sweetie, you hang in there and feel free to vent, wee are all here for you!

Mary

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 9/29/2008 3:29 PM (GMT -7)   
Welcome to the forum LighninSilk. Mary is right. Liver disease is different in everyone. You have come to a very good place for knowledge and support. There are many caring people here that know exactally what you are going through. I know when I first learned that my husband had cirrhosis, I was very afraid. Coming here has given me some comfort and helped me to be better able to deal with what may be to come. I hope you find your answers. You will be in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/29/2008 10:10 PM (GMT -7)   

LightninSilk, welcome to the forum!  :-)    You are not alone here, and hopefully the information and support you receive here will allay some of your fears.

If you you don't mind giving the info, how old is your grandmother?


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

Post Edited (hep93) : 9/30/2008 2:23:56 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/29/2008 10:36 PM (GMT -7)   
Hello Lightninsilk and welcome to HealingWell.

I am so sorry that your grandmother has this disease. My husband died from it. So I know how scared you must be. You have come to the right forum. It is full of wonderful people who give support each other unconditionally.

If you take time to read over some of our older posts you will find a wealth of information. Education is power in the fight of any of the liver diseases.
So get educated as much as you can and then have a talk with her doctor. He will be more helpful if he knows that you already know a lot about the disease. Discuss the options with him.....meds, diet, treatments etc. Write down your questions and ask away. Remember in effect......your grandmother hired him so she is his boss........

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.


LighninSilk
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 9/30/2008 8:56 PM (GMT -7)   
Hello Everyone

I"m sure on the medical terms.... but it is non alcohol related liver disease ... she is 67 and have this for awhile... she is our rock... i'm the oldest granddaughter ( 26 yrs) and i have 6 sister.... my dad ( her son) and my uncle plus my mom... were all very close... and this is gonna be a hard thing to deal with.... we already lost her once.... to the hepatic encephalopathy ( that the coma things from not talking the lactouse ) plus a septic shock scare ( her blood was growing bacteria ) and few other

I have just came back from the hospital where my gran has been for the past week... things are not looking so well... they flew her out to s bigger hospital...

She has some rectal bleeding and there not sure where it coming from.... there worry because all her level have change so fast in the past few days.... she wasnt even in the hospital for her liver she went in for an infection on her leg.... its the number on the labs that worry the doc here and plus her kidney are just starting to show a little failure.... they threw out a lotta words and number ..... i just know that they are worried.... and im a scared.... i konw that i have to prepare for the worst and hope for the best.... but realistcally i know what im heading into ..... it just this getting caught off gaurd thing ... that just makes it all worse.... i just getting use to the term END STAGE LIVER DISEASE..... a few days ago .... getting my head wrap about what could happen.... now it already starting .....

i just need a place to vent... i hate looking weak.... or trying to keep my composure.... but as ready as i think i may be.... i know i heading down a rough road... that no one is ever really ready for

thanks for listen ( reading ) ....

~Heartbroken and Scared~

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/30/2008 10:22 PM (GMT -7)   

Hello, Lightnin.  Glad you came back here to update us on the situation with your g'mother and to vent.  As you had said earlier, your g'ma's liver disease has been going on for a long time.  You don't say if she had received treatment or was under a specialist's care for it, prior to this admission.  There is a type of hepatitis (which means "liver inflammation") that is caused from an immune system disorder.  There's another type that is the result of high-doses of certain medications, such as Tylenol.  Whatever the cause, she does sound very sick.  Hopefully, she will get better care at the larger hospital.  I had asked her age, as that can play into her ability to get better.  For now, prayer would help...I do believe that.

Come here anytime to vent...and do keep us posted.

 



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

Post Edited (hep93) : 10/1/2008 12:13:46 PM (GMT-6)


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/1/2008 5:23 AM (GMT -7)   
LighninSilk, I am so sorry that very grandmother is not doing well. I agree with Connie. Prayer does help. I will be praying for you. This is just the place to come and vent. I have done it myself, and I have always felt much better afterwards.

Hang in there.
Butterflythree
 
There is always hope!


LighninSilk
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 10/3/2008 1:45 PM (GMT -7)   
Hello again

thank for the responses..... i know i have pretty vague on the detail... mostly that because im not sure of them all.... i hate to that i have been taking her for granted ( just meaning that ... i been kinda ignoring the fact that she was sick well not so much ignore but blind to all that was going on )..... mostly because she kind hid it all....

so now i have this being swept off the floor feeling... and all those big medical terms up in the air.... trying to catch a doctor to sit down and tell me what is going on... i know she was suppose to be on the list a while back but with not being fit to be a list for a liver.... then a few months back she was being sent back to the doctors again ( which the appoint was going to be this week) to see what she can do..... she not going to make the appoinment.... her family doctor was trying to explain to me waht it was going with her.... her liver disease is not from alcohol but something about her body building anti bodies ... there a name... but it just slipping my mind at the moment...

it so sad having to watch her laying i bed ...... i even think that she can come outta this hospital visit and maybe make it home... or at least back to the hospital back home.... but this whole hosital stay is taking a tole on her spirit .... and then you feel it watching someone lay there ..... and your helpless to help.... as much as i wish i could.... i know there is nothing that i can do ......

i love this women so much.... im so sad at some of the thought that i have ... ( thought that dont last but they pop into m head )... there thoughts like... i feel like giving up and giving in.... letting go.... ( meaning her to just go).... as strong of a person i am.... it just breaks my heart .... it the whole not know what is going to happen.... or i dont know... I guess my just not having a good day .... i want to break down... and cry but dont feel safe enough in the company i am with .... too top things i just broke up with my boyfriend.... i never felt so alone .... im only 26 years old .... and i feel like i have wasted my life ... ( dont worry guys im not going to do something stupid.... )

i guess i kinda got off topic...... it just today things just seems so hopeless..... i keep up to date... hope there still someone listening.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/3/2008 4:04 PM (GMT -7)   

I'm here, Lightnin.  I was out most of the day.  Big hugs to you.  I know you are hurting really badly about your g'ma and your b.f. relationship not working out.

Did the doctor say she has autoimmune hepatitis?  That sounds like what it is.  I really know very little about that type of liver disease, but there are several people on the forum who have it.  I know they will try to help you understand it when they see your post.

Sweetie, at 26 you have your entire life ahead of you.  If your grandma has no chance of getting better, it is okay to give her permission to go...if that's what she needs from you.  Is there a family member who knows what her prognosis is; what type of treatment they are giving her and what the expectations are?  Somone needs to find out and explain it to you in plain language.

Just take it one day at a time.  That's all any of us really have...this day, this hour, this moment.

 

 


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/3/2008 5:38 PM (GMT -7)   
LighninSilk, I know that it must be really hard watching your grandmother go through all of this. My husband has periods of encephalopathy and it makes me feel like I have lost him for good. I wish to have my husband back and he is still here, if that makes any since to you. I will pray for God to watch over you and help with the heartache you are experiencing. I will also pray for your grandmother.

Remember, we are all here for you.
Butterflythree
 
There is always hope!


LighninSilk
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 10/5/2008 6:42 PM (GMT -7)   
Hello again....

Well must say that this is quite the emotional roller coaster ..... and it so hard.....I been thru a lot of things in my life as short as it may be.... if you only knew half of it.... i a very strong person and no matter how you cut it... there no preparing yourself for something like this.... my heart is so torn...

I did something today... it was so hard .... I came home and left my gran in the hospital... with the hope that her son my uncle will go and stay with her.... i guess it was a no win situation.... sitting there with her hurts and leaving her there hurts... but I have to come back to work....

She is doing better....Im pretty sure that we are outta the woods for a bit... but it so hard to sit there with her.... I know that she really tired of being in the hospital.....to see someone you love so much... so sad .... almost with no life in her .... not from her sickness ... but sadness....

she has a colonoscopy tomorrow.... ( because of the recal bleeding which is what sent her up to that hospital) and the doctors will go from there ( meaning if she come home or not) and i am here at home 4 hours aways... with the hopes that My Uncle will be there with her... it what she really needs.... he always cheers her up.... i know he will...

I cant even type today.... as much as it hurts.... i gotta take care of me too.... even if that mean I have to step back for bit and hide away with work ( i work in a daycare and I love my daycare kids ... they keep my mind busy at least for 7 hours of the long 24 hrs of the day)

I'm right though right... its not being self fish .... what good am i going to be ...if im sick .... oh i dont know .... there nothing to take away this pain..... just have to get thru it ....

~Home in my not so Home Sweet Home

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/5/2008 9:36 PM (GMT -7)   
Lightnin, do not feel guilty about leaving your g'mother and going home to take care of your own responsibilities.  You will be no good to her or anyone else unless you take care of yourself.  I'm glad to hear that she is doing a little better.  You can get a break for a bit, knowing that she is being cared for.  Call her if she is able to take a call.  Send a sweet card.  She will know you are still thinking of her, even if you can't be there 24/7.

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


bratnewton
Regular Member


Date Joined Aug 2008
Total Posts : 131
   Posted 10/6/2008 9:06 AM (GMT -7)   
My prayers and thoughts are with you.

Karen

LighninSilk
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 10/10/2008 5:03 AM (GMT -7)   
Hello again


Well gran has been shipped back to our hospital... i'm having a meeting wit the doctor today.... i guess we call it "THE TALK"... im so speechless at the moment....

~Not So Scared Anymore

cajunred
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/11/2008 1:50 PM (GMT -7)   

Hey there Lighninsilk~~~

My prayers are with you and I do feel your pain and lack of direction as to what to expect.  My husband has ESLD and it is truely hard.  But what I would tell you is to enjoy your G'ma now, and put as much love you have for her in HER heart as those things are the only things that we take to heaven with us. Stay close to God.

Hugs to you and I will keep you in my prayers.

cajunred


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/11/2008 8:46 PM (GMT -7)   

LightninSilk, I'm glad you are meeting with the doctor.  Please let us know what he had to say, if you feel comfortable doing so.  I am glad you are feeling "not so scared."  That's a good thing.

Cajunred, welcome to the forum.  I would like to suggest that you start a new topic (the "button" is right there next to Post Reply) and introduce yourself so that you don't "fall between the cracks" in someone else's thread.  wink


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


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/12/2008 5:48 AM (GMT -7)   
Lighnsilk and Cajunred

Just wanted to welcome you both the the forum and am sorry that you both are having to watch someone you love struggle with the effects of liver disease. Will keep you both in my thoughts and prayers.

Lucy

cajunred
New Member


Date Joined Sep 2008
Total Posts : 5
   Posted 10/13/2008 2:05 AM (GMT -7)   
Connie,
I just wanted to show some love to Lighninsilk and her Gma. i am not sure i underwstand your post. a "new" topic?????????????????????? This was the topic that touched my heart. Sorry if I goofed.
cajunred

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 10/13/2008 5:22 AM (GMT -7)   
Cajunred

You didn't goof at all and you can answer any post. What Connie meant was that sometimes we miss the new people when they reply to a post and don't realize that they are new. At the top of this page there are three boxes and one says new topic. You can choose that option and start a new thread that you can use to introduce yourself to everyone and let us know that you are new here.

Again welcome to the forum.

Lucy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/13/2008 10:35 AM (GMT -7)   

Lucy, thanks so much for explaining that to Cajunred!  I think I'm the one that goofed if she thinks I didn't want her to offer support to Lightninsilk!  shocked    I should have said "in addition to your post to Lightnin..." 

Sorry, Cajunred!  I see that you understood Lucy's explanation and instructions and have started a new thread, introducing yourself...to which I have responded.  Sorry again if you misunderstood.  blush


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


LighninSilk
New Member


Date Joined Sep 2008
Total Posts : 7
   Posted 10/24/2008 7:31 PM (GMT -7)   
Hello Guys.... It's been awhile since i wrote... and that is because i don't have good news.... i am very sorry to say that my gran has passed on ( October 16 ) ....I knew it was coming ... but it all came kinda sudden

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/24/2008 8:28 PM (GMT -7)   
LighninSilk, I am so sorry to hear about you grandma. Know that she is in a better place and no longer has to deal with the terrible effects of this disease. My thoughts and prayers are with you.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/24/2008 8:31 PM (GMT -7)   

{{{{{{{Lightnin}}}}}}  I am so sorry.  I know how much your grandmother meant to you and how much you must be hurting.  It may help to know that she is no longer suffering...that she is free of this awful disease.  I'm sure she felt comforted by your presence in her last days. 

Please keep in touch and let us know how you are doing.


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


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/25/2008 12:41 AM (GMT -7)   
Lightingsilk, please accept my sincere condolence on your grandmother's passing.
I know that you are hurting from your loss. When my husband passed away, our granddaughters were devastated. I know that they are probably a lot younger than you, but this is what I told them and what still helps them to this day. I told them that now their Papa was their guardian angel. I ask them to pick out a star and that star would be him, and every night when they saw that star....it meant that he was watching over them.

Lightning.........your grandmother is watching over you now. I know that you are not a child........but my parents are still watching over me some 37 years later..........

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.

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