cirrhosis of the liver- end stage

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Thadman
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/18/2010 8:57 AM (GMT -7)   
My mother was diagnosed with end stage liver disease due to cirrhosis of the liver last Nov/ December.  My family and I feel so helpless and afraid.  No one has answeres and she doesn't seem to be getting any better.  She is suffering from the mental side effects, large swollen belly, sores on the legs too.  It is so fustrating we can't seem to get solid inormation nor solutions to help the healing process move forward.  She can't even get well enought to go to St. Louis to see if she can be a candidate for a new liver.  Everytime the phone rings at night I think "It's the call" I can't sleep.  We truly are at a lose and feel like the world is caving under our feet.  Everytime she goes back to hospital (which is often) she gets a staph infection which only makes it worse.  When she finally goes poop...that is the hightlight of our day.  Unfortunatley she is in Missouri and I am in New Jersey so I feel even more fustrated, wishing I could be there and do something anything!

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/18/2010 12:02 PM (GMT -7)   

Hello, Thadman, and welcome to the forum.  I am sorry to hear of your mother's diagnosis.  You will get a lot of information and support here.  I suggest that you read the information in the folder, Hepatitis Resources, at the top of the page.  That will give you an idea of what to expect.  Also read the older posts here.  Cirrhosis is irreversible, but it can be slowed or even halted with proper care, nutrition, and meds.  Do you know if she is seeing a hepatologist?  If not, she should be.  Also, is she on Lactulose for the hepatic encephalopathy (mental changes?)  Her only chance for survival is probably a liver transplant, although if she has passed a certain point and is too sick then she won't qualify.  The qualification process before being placed on a transplant list is quite grueling and lengthy.  Since liver disease is such an individual disease, nobody can really say how long she has left.

I hope you find some of this information helpful.

Hugs,

Connie


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


Thadman
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/18/2010 12:29 PM (GMT -7)   
Thank you for your response! I am not sure what she is taking or if she has seen a hepatologist but will definately look into it. I know she is very sick so I am worried about her prognosis but have a lot hope cause Mom is a tuff gal and she has said she doesn't want to die and will fight to live. I know her kidneys are still working well, blood pressure is good and she is able to do number 2 which I was told was important.

I am normally not the type to seek out forums like this but find Mom's situation so frightful and depressing I had to reach out for my own sanity. Actually hearing other stories and advise actually does help!

Much appreciated.

Thadman

mathman
Regular Member


Date Joined Jan 2010
Total Posts : 31
   Posted 3/18/2010 12:45 PM (GMT -7)   
She probably is not seeing a hepatologist yet. I live in Missouri also and the only very advanced medical centers are in St. Louis and Kansas City, but the whole of the state is between those two centers and most residents would have to drive for hours to get there. I am fortunate to live near enough to STL for my mom to deal with her kidney problems. There are other hospitals scattered about but you'd be lucky just to find a GI doc at many of them.

Thadman
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/22/2010 3:28 PM (GMT -7)   
I just got word my mother has 24 hours to live....and today is my birthday.  I have no words for the sadness...this is so unreal.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/22/2010 3:50 PM (GMT -7)   

I am so sorry, Thadman.  Will you be able to go see her before she passes?

Big hugs,

Connie


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


nc born and bred
Regular Member


Date Joined Feb 2010
Total Posts : 155
   Posted 3/22/2010 3:50 PM (GMT -7)   
i am so sorry for the pain you are going through. i shall keep you in my prayers and ask God to give you strength to cope with this. i lost my dad almost 20 years ago, and the pain lessens, but the wonderful memories are there. God must have bigger and better plans for her. no more pain, no mo more suffering.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/22/2010 9:01 PM (GMT -7)   
My thoughts and prayers are with you also..........
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.


worriedgirl
Veteran Member


Date Joined Apr 2009
Total Posts : 1130
   Posted 3/25/2010 6:10 AM (GMT -7)   
my prayers are with you. but keep in mind that she will always be with you
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
 
"No one really dies because they have loved. Because they love they stay in the hearts of the people they have touched so in that their memory lives on." Ghost whisperer-i know corny but this touched me deep down and i see so much truth in it.


zoe5200
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/26/2010 1:57 PM (GMT -7)   
Hello,

I think this will be a lengthy post and hope I can get some input. I’ve been reading your posts on Cirrhosis. My mom had a diagnosis of cirrhosis of the liver 30+ years ago. She had lived a fairly normal life until diagnosised with colon cancer about 10 years ago. With chemo treatments off and on about 4 or 5 times over the last 10 years, she has been good and bad. Over the last few years, her liver has been showing signs of trouble.

Problem #1, she never told her doctor that she had a cirrhosis diagnosis 30 years ago. Her oncologist and MD have given her chemo treatments as I said, 4 or 5 times over these 10 years and last year, gave an extremely strong type of chemo. As you know chemotherapy is poison and can do a job on other organs, especially the liver. With her doctors not knowing this, I see a potential problem.

Problem #2, she was supposed to start chemo again a month or so ago but her blood count/levels were too low. She’s had 3 transfusions over the last 4-6 weeks but it’s not helping. She is retaining fluid in her abdomen that they cannot drain due to a clotting problem. Nothing they do is bringing her levels to a range where they can do anything. I’m sure all of this sounds familiar to many of you.

Problem #3, She is now very weak, falls a lot and cannot get her strength. She is uncomfortable with her bloated stomach and now, this week, the nurse asked my brother to come in with her for her visit. (He lives near her, I am 1500 miles away). He went in with her and listened to the conversation. The doctor asked my mom if she drinks…..she said yes. Her husband then chimed in with “well, she doesn’t get drunk if that’s what you mean!” The doctor said that she cannot figure out why her liver is so bad off and wondered if there was something connected with the chemo. My brother said that she had cirrhosis many years ago and my mom said “No I didn’t!! It was hepatitis.” The doctor then said there was nothing they could do for her at this point. They cannot drain the fluid due to the clotting issue, they cannot give her chemo now and that the cancer won’t kill her, her liver problem will.

After their visit, my brother stayed behind and spoke with the doctor. He told her all history and the cirrhosis diagnosis years ago. The doctor said it was all making sense now.

Bottom line, they cannot do any kind of treatment at this point and have given her 3-6 months. I feel that this is if she’s lucky, doesn’t drink and tries to take care of herself. I don’t know.

I’m strong and can take any input anyone has here. I am not looking for a diagnosis or for someone to tell me should could last years. I know that’s not the case. What I am wondering is if she is at this point – fluid in the abdomen, edema in her legs (pretty much gone now), jaundice, shiny red skin, blotches – should I assume it will be less than the 3-6 months? As I said, I live so far away and need to go there. I don’t know if I should maybe wait for Mother’s Day or push it up and go as soon as possible.

Thanks for any responses.

allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 3/26/2010 2:08 PM (GMT -7)   
Thadman, I am so sorry for your bad news of your mum. Thats the thing with this disease, it is totally unique to the individual. You have not even had time to catch your breath, my thoughts are with you...

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/26/2010 2:38 PM (GMT -7)   

Zoe, do you know how to copy and paste?  If so, could you please copy and paste your post into a new thread by clicking on New Topic and putting it in there.  You will get more responses that way.  However, I can tell you that nobody here can tell you how long your mom has left.  It's a very individual thing.  Go with your gut.  And welcome to the forum.

Hugs,

Connie


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


zoe5200
New Member


Date Joined Mar 2010
Total Posts : 3
   Posted 3/27/2010 3:25 AM (GMT -7)   
Thanks Connie, I posted a new thread.

Zoe

txboy
New Member


Date Joined Apr 2010
Total Posts : 1
   Posted 4/19/2010 1:22 PM (GMT -7)   
Hi...I'm new here, but I have read all the comments and I thought I would kind of add my thoughts...we could sure use a support group, but then standing and telling the world the truth isn't going to help. I lived with HCV for years and finally in to Cirrhosis. We call that now ESLD or we move to end stage.

At this point I live miles away from any family support system, but when I do talk to them..It's pretty much they are in denial. I think the most important living philosophy to all this is to wrap our arms around the truth and the likely outcome. It eases the pain in the heart and soul mostly.

After 2 unsuccessful treatments with Interferon's and a Geno type 1b, I suffer from all the side effects that are stated on every website:

Nausea
Portal Hypertension
Varices..already banded twice from bleeding
Enlarged Spleen
Encephalophathy
tremors
Ascites
MELD Score 9-10

So what I do is take care of my body with vitamins C D A, drink natural juices that are from HEB or any store, I drink ensure for muscle, Lactulose for the high ammonia levels, Cipro for SBP, Xanax for sleep and anxiety, Zofran for nausea. See it's not the Cirrhosis or HCV that will end your life. It's the side effects. Manage those well and the outcome is better.

CAUTION...Remember what you are going through and do not get caught up in the trap of comforting everyone else in your family that will probably need emotional support. Remember my friends you are the sufferer, you are the conqueror, you are the survivor, you have the courage of the Lion and the Strength of the Bull

You are no Dr of the mind and can not help anyone in your family that is not going through what you are. Live my friends LIVE and be positive when ask. See they know what's going on, but they are in denial, but they do not research the way we do...Why? It's not their problem until they walk in our shoes.. Remember there are 4 functions to healing right? Doctors will tell you this. I call it MSPP...Medical, SPIRITUAL, the mind, the body. My Doctor schools me on this and do I feel better. The spiritual is the most important. It makes everything else work better. Believe me I'm in stable condition right now.

God Bless everyone and I pray for your healing and salvation

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/19/2010 2:27 PM (GMT -7)   

Txboy, thank you for your comments.  I agree with most of what you said.  However, it seems there are more caregivers or relatives here than patients, and they certainly do try to educate themselves about liver disease.  Often it is the patient who is in denial, especially those who continue to drink alcohol.

I'm glad you are stable now.  So am I and I also do a lot to take care of myself while dealing with hep C and cirrhosis.

You might be interested to know that there will be a new treatment available next year which adds a 3rd drug to the combo, and which is far more successful with genotypes 1a and 1b and only requires 24 wks. of treatment.

If you would like to be a part of our family here, please start a new topic (click on New Topic instead of Reply) and introduce yourself and your situation.



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

Post Edited (hep93) : 4/19/2010 5:11:31 PM (GMT-6)


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/19/2010 8:14 PM (GMT -7)   
Hello Txboy and welcome to HealingWell.   So happy that you are a strong enough person to deal liver disease and are doing everything possible to hold it at bay .   You have a real smart doctor there. 
 Lot's of patients can't do it.  Some hide behind alcohol or drugs .......other bury their heads in the sand and pretend it doesn't exist. (Like the big elephant in the room that no one wants to talk about.)   It being a life threatning illness it's terrifies some so they can not deal with it. 
 
I can tell you as a former caregiver to 2 liver disease patients....(husband and brother)....I may not have walked in their shoes.......But I did pick up those shoes and put them back on them so that they could keep walking. 
 
I understand you were trying to encourage the patients with the follow paragraph:
 
[CAUTION...Remember what you are going through and do not get caught up in the support. Remember my friends you are the sufferer, you are the conqueror, you are trap of comforting everyone else in your family that will probably need emotional the survivor, you have the courage of the Lion and the Strength of the Bull]

But as  Connie has stated......there are lots caregivers on this site and that could be misconstrued as " they are not" and "what they are trying to do for their loved ones" is not important.   And we wouldn't want anyone to think that. 
 
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.


CGR
Regular Member


Date Joined Nov 2009
Total Posts : 64
   Posted 4/25/2010 4:55 PM (GMT -7)   
Dear Pink Grandma,

"I can tell you as a former caregiver to 2 liver disease patients....(husband and brother)....I may not have walked in their shoes.......But I did pick up those shoes and put them back on them so that they could keep walking."

I love that statement.

On behalf of all caregivers .... thank you.

With love,

Rob

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 4/25/2010 8:53 PM (GMT -7)   
You are quite welcome Rob. 
 It's true though.  Once liver disease really takes off, everything falls on the caregivers as we all know.  That why I say over and over.......take a little break.  Do something for yourself for a little while.   There's only one energizer bunny and none of us are it.   I read somewhere that the death rate for caregivers is high.  I believe it too. 
How are you and your partner doing???  Hope everything is okay. 
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.


JessesWife
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/7/2010 11:32 PM (GMT -7)   

JESSESWIFE, please note:  I copied and pasted your original post to a new thread so that more people could see it and respond.

Hugs,

Connie

Post Edited By Moderator (hep93) : 5/11/2010 1:23:01 PM (GMT-6)


arneeb
Veteran Member


Date Joined Nov 2009
Total Posts : 2350
   Posted 5/8/2010 5:14 PM (GMT -7)   
Jesse's Wife... thanks for sharing your story.. but you should start your own thread... the people respond to you... well the administrator.. will tell you... I just lost my significant other April 22nd... we didn't go through near what you are but we did encounter the "you're terminal" attitude and look.. today I got a letter from the State of Minnesota about a medicine that Dr. ordered and pharmacy gave to us then State of MN said wasn't entered right into the system... so fighting that so pharmacy won't be stuck with the bill... but we found this from the hepatologist to the psychiatrist that he saw for depression.. kind of like just go and die... so we were in this no man's land... and held on to each other for "dear" life... and we were able to find some respite in that place... but dear I feel for you... I've been there emotionally... keep up the good fight.. my thoughts and prayers are with you and your hubby.. Sandi
There is no pit so deep that He is not deeper still... Corrie Ten Boom

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 10, 2016 4:08 AM (GMT -7)
There are a total of 2,735,791 posts in 301,337 threads.
View Active Threads


Who's Online
This forum has 151436 registered members. Please welcome our newest member, george252.
152 Guest(s), 4 Registered Member(s) are currently online.  Details
summer16, Loutucky, poohcheez, Traveler


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer