Questions re: end stages of cirrhosis/what to expect??

[4jems]

Hi everyone,
I often read this board and appreciate the wealth of info available from
people living this nightmare. My sister-in-law was diagnosed with end-stage
liver disease 5+ years ago. She has had multiple esophageal varicies rupture and then banded. She has been on lactulose for one year. She has ultrasound
paracentesis weekly, averaging 5 - 7 liters per visit. Recently they have
increased the frequency of draining to every 4 days, averaging 5 liters
per visit. About one month ago, her amonia levels were so high that she became incoherent and subsequently hospitalized. She came out of the severe confusion but is left with almost zero short term memory.
I was wondering what we can expect going forward? Will she continue to
retain more and more fluid? Her fluid in only in her abdomen, no fluid in arms
and legs at all. How long can someone survive in this condition? Is there
any hope that her memory will improve? She is not a candidate for transplant.
Any info regarding this would be very helpful. Thank you.

[iluvwv]

good question. from what i've read everyone is different. kinda painful to think about. my husband is at the same point as your sister-in-law except he did get approved for the transplant list. i have also been wondering about the memory loss thing. does anyone know if their brain functions will get better after transplant?
good luck 4jems.

[harka]

I can answer this question quite fully actually, but am a little pressed for time right now. I will answer this as in the next few hours.

[music47]

4jems

My husband suffered through many years of liver disease before he received his liver transplant in 2000. Before the transplant, he swelled with fluid and his ammonia levels got really high. His body kept filling with fluid more and more as time went on and he had confusion also. Since the transplant his mind has been very clear. My prayers are with your Sister in law and family.

Sincerely Nadine

[harka]

Hi again 4jem,

First off, I just wanted to say I'm sorry to hear about your sister in law. Liver disease is a very difficult thing obviously for patients, but also for their families because it's hard to watch a loved one deteriorate like that.

When the liver stops working properly there are two main types of problems that happen. The first type of problem is based on the liver not being able to do its job of detoxifying the blood and building proteins and such. There are many manifestations of this clinically, but the main one is that the liver is not able to breakdown things like ammonia. Ammonia can build up in the blood and cause the patient to be confused and disoriented. One of the ways to try to cut down on this is for the person to take a laxative so that not too much protein is absorbed. The more protein that is absorbed, the more they are broken down and the more ammonia that is produced. The liver also has trouble producing clotting factors so the person has trouble with bleeding.

The second big category of symptoms has to do with the fact that the liver, instead of being a nice spongy type organ that blood can flow through easily, becomes a scarred up hard structure which liquid can't flow through. Because of this, there is a lot of back pressure which causes veins in different parts of the body to swell, but most importantly in the esophagus and in the rectum. The dilated veins, especially the ones in the esophagus can burst and cause life threatening bleeding. The back pressure also results in the seepage of fluid out of the vessels and it ends up collecing in the feet and also especially in the abdomen--it's called ascites.

The thing with end-stage liver disease is that it's either stable, and patients can live for a few years on medical therapy to prevent complications. Unfortunately, it sounds like your sister in law is in a form of "decompensated" liver disease which means that there are symptoms of serious dysfuction such as confusion, bleeding, ascites etc. The biggest reasons for patients with end-stage liver disease to die is either a large variceal bleed (i.e. the rupture of a dilated esophageal vein), or a serious infection.

Unfortunately, once you get to severe decompensated liver disease, there are forms of medical treatment (i.e. banding of varices, antibiotics etc) that can temporarily help, but unless the liver is transplanted (and some patients are too sick for this) there is nothing else that can be done.