End Stage Liver Disease

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.

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.

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.

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

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,

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.

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, 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.

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..........

Tazdevil, yes, that's really horrific about his salt intake!     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!

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.

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.