End Stage Liver - what does the end look like?

I would like to know where I can find information on END STAGE LIVER DISEASE. My mother, 73 yrs old, has had Hep C for over 40 years and is now diagnosed as being in End Stage Liver Disease. We wanted to know what to expect and most importantly, how can we make my mother as comfortable as possible as she transitions. What are the palliative treatments available? She is taking ZANTAC to help with the varices and taking LACTULOSE to help with the confusion. But what about the fatigue? the cold hands and feet? inability to eat? confusion? swelling?  What actually will be the cause of death? I hope some of you can answer some of these questions. Her doctors are a great team but they seem touchy to address the issue of her dying in detail. Maybe no one knows? It would be great to know how we can make her more comfortable. We're not looking to rehab her! Just help her. Thank you, Jessica

[murdockd]

I just found out my childrens father has end stage liver disease and i have the same questions as you do. He was told he has two weeks to a month to live . I have no idea what to expect. It doesnt seem real. I took a leave from work to care for him at home.He is at home now and we are working with hospice. I would love to see what answers you get because i have the same questions. He is 46 years old. Thanks Dawn  

[kcmike]

hi, you've replied to a posting from 2001.  you will probably not get a response from that person.  i'm sorry to hear about your ex.  I was diagnosed w/ESLD in 2003.  In 2005 I received a transplant and I'm not trying to give you any false hope, but if you could tell me a little about what has caused this, then I might be able to answer your question better.  generally as the functions of the liver begin to fail you can monitor the blood work and get an idea of the gravity of the situation.  this is a site dedicated to hepititis (hepatitis) and most here are suffering from Hepititis (hepatitis) C.  please let us know if this is the case with your ex and perhaps some of the survivors of ESLD will help you out.
kcmike

[REVRAT]

HAVE ESLD ON RECORD IN 2005 AND WAS TOLD OF HEP C IN 1995. HAVE YOU EVER BEEN TOLD HOW SERIOUS THIS WAS PRIOR TO END STAGE?  DOCTORS HERE DID NOT SEEM TOO CONCERNED WITH HEPC WHEN I WAS NOTIFIED IN 95 FROM THE UNITED BLOOD SERVICES.  MAYBE SOMEONE SHOULD REALLY TRY TO INFORM THE PUBLIC JUST HOW THIS DISEASE WORKS ON US. SINCE I FALL INTO THE INSURANCE GAP    TOO MUCH INCOME FOR STATE HELP AND NO INSURANCE THE OUTLOOK IS NOT SO GOOD, WOULD LIKE TO SEE WASTED GOVT. MONIES SPENT TO HELP THE SICK AND MAYBE A LITTLE LESS ON THE ELECTIONS AND FOREIGN COUNTRIES.WE STILL VOTE!!!!

[Louise111]

My Husband was told recently that he is ESLD....last Aug, all the Dr. said was the Left Lobe was all cirrhosis, the larger part of Liver is enlarged......never said what "Stage of Liver Disease" my husband was in....In Nov. he started to get jaundice......he's a beer drinker......stopped for a year and a half, but started again 2 years ago.......The Doctors don't explain the different Stages of Liver Disease.....they don't educate the patient....If I knew he was at Stage l, 2, or 3......a while back.......it would have been more beneficial to us, to seek medical treatment, or go to rehab to stop his drinking, when he was at Stage 1, so he wouldn't go to Stage 2, 3, or 4.    He's currently in rehab, no more jaundice, eats well, sleeps o.k.......is on Enulose Syrup, and the other meds for fluid, etc....can't remember the names now.....he's only complaint is that he feels tired a lot.  He walks anywhere from half to 2 miles a day, if he feels up to it....he was always an athlete, and used to walk 6  miles a day.   I, too, don't know what to expect, can he stay at Stage 4 for a long time?  Will the Liver Function improve if he never drinks again, even if it's cirrhosis......when his liver was "enlarged" in Aug, was it also cirrhosis.....the Dr. only mentioned the left lobe......Husband comes home Thrus.,  we have Dr's appt (GI) next Tues, and also with a Hepatologist......................if anyone has any enlightening info or advice, please write.  Thank you.
Louise111

[Louise111]

Thank you for replying.   I also have heard that if Jim is sober for 6 mos. to a year, he might be considered for a transplant......I'm hoping his Liver continues to function as best it can (even though its ESLD/Stage 4) for a long time, and I hope he can get a transplant.  The best to you and your family.

Hugs and prayers,
Louise111

[helplessintx]

My mother in-law was diagnosed with scorosis of the liver 9 years ago and was under hospice care.  She lived thru that and has been living on her own since.  However, this week she was diagnosed with esld, and at 79 she has no hope for a transplant.  

We're trying to keep her comfortable and also plan for the inevitable.  Can anyone give us an idea of how long we can hope to have her with us?

Thank you in advance for your help.

[reddawg]

There is a wealth of information on various Medical web sites. To name a few....
WebMd.com
MedicineNet.com
hcvadvocate.org

Know this, having ESLD does not necessarily mean a death sentence.

[ben101]

you can also type cirrhosis of the liver into the google search enging

[hope104]

Hi this is hope 104, i was found with hepatitis c in 2005. The doctor never  explaind to me how bad this could get. They never told me to stop drinking now in 2009 i got sick with bad   leg pain and adomanal pain too know i am at a serious stage.What i would like to know is why the doctors dont tell to stop drinking? What all im reading is i have to stop drinking is it because it doesnt make a diffrents any more.Now im really scared i have two daugters .I am 37 yrs old  my faith is sliping away,.