End Stage Liver Disease

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Yamaha
New Member


Date Joined Oct 2008
Total Posts : 2
   Posted 10/22/2008 9:24 PM (GMT -7)   
Hi, I'm new at this--first time chatting. Hoping for a miracle. The clear questions and better stated is...Has anyone recovered from Ends Stage liver disease. Maybe not recovered, but able to live comfortably. Brother has no energy, can't walk much and needed oxygen after getting out of hospital bed. I think he wants me to try to take him out of hospital for a day. probably not possible.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/22/2008 10:16 PM (GMT -7)   
Hi, Yamaha, and welcome to the forum!  In answer to your question, usually not unless the patient has a transplant.  Why was your brother hospitalized?  What led to his diagnosis of ESLD?  NO alcohol, a basically vegetarian diet, lots of rest...these things can slow the progression.  It's difficult to comment, not knowing your brother's history.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/23/2008 3:53 PM (GMT -7)   
Just wanted to welcome you to the forum Yamaha and say that I'm sorry your brother is dealing with this horrible disease. I will include you both in my prayers.
Butterflythree
 
There is always hope!


autumnrain
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/9/2008 1:34 AM (GMT -7)   
Hi.  My sister has end stage liver disease and in all honesty it's absolutely most painful thing to watch.  Unfortunately without transplant there is no hope, and as far as comfortable for some years my sister was, but as of late she is in pain, has ascities and I wish there was some miracle.

vasquez
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 1/17/2009 5:20 AM (GMT -7)   
My husband as end stage liver disease. I work full time and home schooling two of three kids. It is hard. It is taking its tole on our family. He is 54 and I'm 34 with three boys 15, 11, and 7. It is realy hard on them. He was in the hospital twice in December. The laxoculoce is just not enough to help keep levels down sometimes. Its hard on all the medications he has to take too. It is hard as well to even get on too a liver transplant list. There is alot of compation for the organs. We have been working towards that for almost a year. You have to fight the disease on some many levels. good luck to all of you looking for ways to help your family. thats how I found this site. It is nice to here from some one else that is going though the same things as we are.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/17/2009 1:10 PM (GMT -7)   
Welcome to the forum Vasquez. This disease can be very hard on a family. I'm so sorry that yours is having to deal with it. My husband suffers with cirrhosis and hep C. He recently had a TIPS procedure to help prevent varices from bleeding. He was just released from the hospital yesterday. So far, so good. He is not on the transplant list yet. We have been told that he is not sick enough yet to be listed. I am glad that you found us. You're right. It is good to have others to talk to that understand what you are going through. This place has been a lifesaver for me. Your family will be in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2009 1:35 PM (GMT -7)   

Hi, Vasquez, and welcome to the forum!  I'm so sorry that your husband is fighting liver disease.  It's a hard battle and hard on the family, too, as you know.

I know you will find a lot of support and information here.

Yamaha, are you still around, perhaps lurking?  How are things going?


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


Tripp
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/17/2009 3:34 PM (GMT -7)   
Hi! This is my first time on here. My significant other of 14 years is in the end stages of liver disease. we live in an old 40' bus and I am his sole caretaker. Last Feb he had a bleed oout and almost died. He spent a week in the hospital and most of that time he did not know anyone or where he was. He has been a "functioning alcoholic most of his life. This episode has scared him clean and sober since. Unfortunately, the damage is done with no hope for recovery. I have despritely been trying to get information on what to expect and what to look for. Everything I had found thus far was so generic that it was no help. The local hospice wont even talk to me unless he agrees to sign up for their program. He is in denial and refuses their help. I have learned more here by just scanning through your posts. He no longer has any quality life as all he does is sleep and eat. On a good day, he will watch tv but usually sleeps through half the programs. He has already lived past the time the drs gave him, the only tests they do are occassional amonia tests. These are really hard on him as the lab has a very difficult time finding a vein and have to take several tries before hitting a vein. He has had all the symtoms at one time or another (except coma) so I gather that he will one day go to sleep and not wake up again. Most of the time when he sleeps his breathing is so shallow you cant see him breath or hear him. I am responsible for all the cooking, cleaning, bill paying, home repairs, pickup maintainance, tracking appts and anything else that comes along. Sometimes I feel so alone and helpless. I don't want to sound callous but I sometimes just wish I knew how much longer he he going to hang on. It would be different if there was any chance for recovery. The doctor has him on morphine, enulose, vitamins, spirolactone and furosomide. Since his Dec appt he has appts every month now. Other than the meds they give him no other treatments. Is there anything I should ask the dr to do for him? "Ed" can barely walk and has a tendancy to lose his balance and fall. I have tried to proof our bus as much as possible so he has hand hold wherever he tries to go. When he goes to the doctor he gets mad at me when I hover but I am so afraid he will fall and get hurt. Am I being callous and selfish? I am just so tired and scared.
Tripp

cordovian
New Member


Date Joined Jul 2008
Total Posts : 12
   Posted 1/17/2009 6:10 PM (GMT -7)   
My heart and soul goes out to you.............May God wrap His Ever Loving Arms around you and Ed.
I'm sorry I can't help.........I'm almost in the same boat.
This disease is horrible and so hard on a Caregiver. You are in my prayers and many here will
join in, I promise.

Take Care of Yourself and
Do the Best You Can,

Angels are being sent your way,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,Caretaker of same, Memphis, TN

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/17/2009 8:22 PM (GMT -7)   

Tripp, I'm glad you found us, but sorry that your husband has become so ill.  If he would only let Hospice get involved, they could be a big help...and also give you respite support.  You have so much on your shoulders, you need a little time for yourself now and then.  That's not being selfish, it's necessary.

You said the info you receive is "generic."  That is because there are certain things that are common to everyone with liver disease (such as the horrible fatigue), but at the same time every case is different.

When he was first diagnosed, was a transplant ever mentioned?  It sounds as though he would not be a good candidate now.

Just know that we are here to offer you support and our prayers are with you.

Hugs,


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/18/2009 8:22 AM (GMT -7)   
Tripp, Welcome to the forum. My heart goes out to you and your significant other as you battle this disease. It is not being selfish not wanting to watch someone you love so much suffer. It is just so a horrible unpredictable disease that takes its toll on the caregiver and the patient. My thoughts and prayers are with you as you travel this road that so many of us are on.

Take care!
Butterflythree
 
There is always hope!


Tripp
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 1/18/2009 11:04 AM (GMT -7)   
Thank you for your support. I was feeling so alone and kept telling myself there had to be others out there going through this. A liver transplant was never an option for Ed. The sad thing about Ed is for over 18 yrs he was blaming himself for his wife's death and has been trying to drink himself to death as punishment. When he had the bleed out and finally came home he said he had paid enough pentenance and wanted to live. Sadly it is too late. I know he is in denial about the outcome of this desease. He is of the frame of mind that now that he has changed his mind that he will beat it. At first I thought maybe he would because he stopped drinking and was doing so well. Then his good days got fewer and fewer. Now most days are are bad ones. Some not as bad, like he will be lucid but he never gets up unless he has a drs appt. His appetite changes daily. One day he will wake up demanding breakfast and other days he hardly eats what I put in front of him. Luckily I have some family that lives a couple of blocks away and I can sometimes slip away for a cup of coffee and cry on my sister in laws shoulder. I worry about my future as well, as when Ed passes all income will stop and he was unable to get life insurance.
The main thing we battle with is his amonia levels. He has to drink massive amounts of enulose to prevent the constipation. Sometimes even that does not help. I try to take everything one day at a time. But it is hard when I have to answer the same questions over and over and tell him what day of the week for the 6th time in one day.
Thank you again for your support. It helps being able to let it out and to see how others are handling it. Thank-you for the life line.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/18/2009 1:25 PM (GMT -7)   

Tripp, I am glad to hear that you have some family nearby.  My heart aches for you and what you are going through.

Remember, we are always here.


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


5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 1/22/2009 10:46 AM (GMT -7)   

Dear Tripp,

You've come to a good place to talk, learn and vent.   My friend who suffers from cirrhosis and esld often does not seem to realize how her illness affects others in her life.  I suppose with her day to day troubles and the fear of losing her life that it is easily understood.   However, I watch her signficant other go through helping her and yet she doesn't seem to understand that this is happening to him and to her children too.  

What I am trying to say is that wondering how much longer and what else is in store is not as selfish as it sounds.   Anyone who has been in this situation understands where you are coming from.    Take each day as it comes.   Try to start figuring out what you will do when you need another income.   It may seem that you don't have time for this now, but it may help you to get to a better place in your own life if you have some sort of a plan for later.   

Joan

 


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 1/22/2009 2:14 PM (GMT -7)   

Hello all,

 

This is the only site that I can find that has people in the same position as me. My father, 67yrs old, has been diagnosed with ESLD. He is taking diuretics, lactulose, daily antibiotics as well as a number of other medications.

 

He has had a number of drains the biggest so far was 15 litres and three cases of total disorientation and hospitalisation. In the last few months it appears that he has lost a lot of weight even thought he is following a high protein diet.

 

This is killing my mother and now my children are seeing a decline in ‘pops’ motivation to interact.

 

Unfortunately, my father is not a suitable candidate for a transplant so I guess it is just a matter of time. I know that there are no miracle cures and that each case is different. I would like to know how long he really has. The doctors have indicated 1 – 3 years maybe more, may be less.

Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/22/2009 4:39 PM (GMT -7)   

Tazdevil, welcome to the forum.  You might want to start a new topic to introduce yourself--don't want to see you "fall through the cracks" on someone else's thread.  I am truly sorry for the pain you and your family are going through, in watching your dad decline.  Unfortunately, there is no set answer to the question of "how much longer?"  Each case is different.  You really won't know until it's the very end.  In my case, I had a death sentence of liver cancer from hep C...but I'm still here (20 mos. after treatment and surgery) and am stable.  So one never knows.

I know you will receive a lot of support here.  Please look over some of the educational threads here, as well as older posts, for additional info.


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


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 1/22/2009 5:21 PM (GMT -7)   
Tazdevil, Welcome to the forum. I am so sorry that your father suffers from this disease. As Connie said, there is no way of really knowing how much time a person has. They can be doing pretty bad and then bounce back. There are others that have no warning and just pass away. My husband suffers from cirrhosis and hep C. He had no major complications until November, when one of his varices bursted. He almost bleed to death. That is just one of the examples of how unpredictable this disease can be. You have come to a great place for support. There are so many caring people here. I have learned so much from this site. I hope you continue to come back. I'll be praying for you.
Butterflythree
 
There is always hope!


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/22/2009 7:01 PM (GMT -7)   
Hello Tazdevil, I just want to add my welcome. I am so sorry that you are dealing with this.....I know how tough it is on the family.
It's really difficult to say ....how much longer he may have..........each case is different......... Some of it depends on how well the patient takes care of themselves......eating,sleeping,exercising and taking their meds as prescribed. But what I do know........is to try and enjoy every minute that you have with your father.

Near the end of my husband's journey.........I finally got one of his doctors to tell us that he had 3-6 months left. I couldn't see him lasting that long with how sick he was......I googled something like
" ESLD how long" . I actually found a site that if you put in all the
symptoms.........it calculated the time. With all my husband's symptoms at the time it told me 1-3 months......He died 2 months later. I sure wish that I knew what site it was....and I since tried to find it again and couldn't.

Read over some of the old posts.....they are very educational.

Hang in there..........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.


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 1/26/2009 2:22 PM (GMT -7)   

Thank you all for your support. I know that the ride will be long and bumpy. I am not sure what is going through my fathers mind about his disease. I think he is in denial blaming his symptoms on anything but his liver condition.  The doctors have him on a high protein diet to minimise muscle wastage but he is looking very thin at the moment.

 

I also found out that he is eating salt by the teaspoon full nono   I know that this is not going to help him one little bit. I almost think he has given up but is keeping a brave face.

 

 I have seen a number of encephalopathy events and have even had to pick him up off the floor due to weakness during one of these events. I know what the end result of this disease is I would just like some warning when that time is coming. I do not know what to look for!


Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/26/2009 3:32 PM (GMT -7)   

Tazdevil, yes, that's really horrific about his salt intake!  smhair    I know that some people just slip into a coma at the end.  Others sleep 22/24 hours a day.  The kidneys will normally shut down shortly prior to death.  These are things you can watch out for as warning signs that the end is very near.

Keep us posted!


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


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 1/28/2009 1:56 PM (GMT -7)   
Hep93, Thanks for the information. My father is seeing his specialist today for another check-up and booking in for another drain. He looks like he is 10 months pregnant.

Dad has his days where he is quite good but then he declines and I notice him slurring and being a bit confused and angry. He picks arguments for the sake of arguing which is frustrating.

Now I sound like I am whinging,…..
Tazdevil,
 
The roller coaster continues.......


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/28/2009 3:28 PM (GMT -7)   

Tazdevil, don't worry about "whining."  We all do it at one time or another.  Is your dad on Lactulose for the encephalopathy?  Hopefully, draining will give him some temporary relief from the ascites.  Is he on diuretics such as Lasix?

Take care.


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


Tazdevil
Regular Member


Date Joined Jan 2009
Total Posts : 30
   Posted 1/28/2009 4:18 PM (GMT -7)   
Yes, he is taking lactulose, 2 different diuretics, potassium and daily antibiotics plus some other medications. What a cocktail....
Tazdevil,
 
The roller coaster continues.......


Tripp
New Member


Date Joined Jan 2009
Total Posts : 15
   Posted 2/4/2009 11:32 PM (GMT -7)   
Yesterday I spoke with Ed's doctor and he said he doesn't expect Ed to live another 2 months. But he was told last year he wouldn't make it to Christmas. so maybe he will beat the odds. I have been speaking with my family and when the end comes they want me to move into an apartment that is attached to their house. I have already decided on a financial plan and some other stuff. My daughter wants me to move to NJ where she's at but they live in a studio type apartment. I may go for a visit but my roots are here in Oregon. Besides I couldn't take my cat as my daughter's mother-in-law is allergic to cats and Tripp(my cat) wouldn't be welcome. I refuse to give him up as he has been a real comfort to me during all this. I just take each day as it comes. At least, according to the dr, Ed will just go to sleep and not wake up. I was scared stiff that it would be another bleed out episode like last time. He is still being stubborn about getting hospice involved as he is still in denial. I think he thinks that as long as he stays in bed and conserves his energy that he will live longer. What he doesn't realize is staying in bed is causiing his muscles to get weaker. He even refused to get up and go to his last dr appt. I am glad there is some place I can go to talk about this stuff with people who know what I am going through. Talking to my family helps but its not the same. They only hear whats its like...they haven't lived it. Thank-you so much for being here.  

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 2/5/2009 8:58 AM (GMT -7)   

Hello Tripp,  I am sorry.  I missed your first few posts somehow.   I want to welcome you to HealingWell.   I am sorry that you are going through this........but it is good that you found us.....

You are absolutely right about talking with people who know exactly what you are dealing with.   All of us,  are there, or have been  where you are and totally understand your feelings.  I felt so alone before I found this wonderful site......That's what we are all about.  To help each other through a very difficult road of life.  Each road has different bumps and turns,  but all the roads are difficult to travel for the patient and caregiver alike.

Hang in there........we'll be here whenever 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.

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