End stage liver disease + two tumours in liver

Hello Sanchintensho,

Welcome to the hepatitis forum. A moderator will also soon be along to welcome you and give you their insight and experience.

You did not mention what caused your brother's liver disease in the first place. You mention the tumours, which I assume are hepatocellular carcinomae, but it would be useful to know the underlying aetiology. HCC often arises from a cirrhotic, or very badly scarred liver, which is precipitated by such things as chronic alcohol ingestion, Hepatitis C (or, less commonly B) or autoimmune hepatitis.

The signs that you describe, particularly his jaundice and peripheral oedema are signs of end stage liver disease. Without any shadow of a doubt, drinking in the pub is taking him closer to an earlier death than he would otherwise have experienced with or without the cancer. No doctor would ever condone such behaviour, unless it was seen as a palliative measure at the end of life to try and squeeze a little enjoyment out of whatever is left, although ethically, I think that they would be on very shaky ground to actively encourage it.

There are others on the forum who know more than I do about options for chemo etc. but one thing that I do know is that a present habit of drinking alcohol is an ABSOLUTE CONTRAINDICATION for any kind of restorative intervention. Even if your brother was not (or is not) an alcoholic (although the fact that he's in the pub drinking every day despite his liver disease suggests very strongly that he is), the fact that he has chosen to drink whilst having the disease will mean that he would be treated as though he were anyway.

I suspect that your brother has been told that he is no longer to drink, but possibly out of fear or addiction continues to do so because it's the only option he sees. Unfortunately for you, it means that he will certainly die from this disease and even more unfortunately, it is not likely to be the nicest end. Liver disease does not provide many options for a greatly peaceful end, but as your brother begins to de compensate further and further, his recent history of alcohol ingestion will likely see him experiencing many of the nasty side-effects of the disease.

I don't want to upset you, but you should prepare for the absolute worst. There are people here that can help when the inevitable arrives.

Best Wishes,

Jamie

Jane,

The Man says his brother has ESLD from drinking.

Hi sanch,

Like A. Ziffle said, he has to want to quit. You may want to have him read, or print out for him, the "hepatitis resources" thread which is second from the top.

The way I see it, and i won't sugar-coat, there is no point in treating the cancer if he continues to imbibe. After seeing ESLD first-hand, I think I'd rather die from ANYTHING else. He needs to know that in a short time, he will be needing medication, some of which will cause constant diarrhea of the type that requires you to stay close to the loos. Without this nasty med, ammonia levels rise from a sick liver and causes confusion, unconsciousness and if untreated, death. Oh and tell him to start stocking up on adult diapers.

He is already having swelling and soon he will develop ascites which. Is a build up of fluids that requires his abdomen to be drained regularly via a procedure called paracentesis. He most likely will develop esophageal varices, which will need to be banded to prevent rupture, which can be fatal. The varices form from pressure in the hepatic artery.

He will become cranky, tired, shaky, nauseous etc., the list goes on. All of this will necessitate a caregiver because he won't have stamina or energy to do it alone. There will be tons of dr and or hospital visits too. He will need to be monitored frequently because when he doesn't take his meds properly, and that will probably happen, it doesn't take long for encephalopathy to set in. Then he will be too confused to know he is in trouble.

You get the picture. So tell him to get his affairs in order and line up some caregiver(s) because it won't be long I'm sorry to say.

I wish him all the best in his effort to quit though.

Please keep us posted.

Post Edited By Moderator (hep93) : 7/21/2013 12:28:38 PM (GMT-6)

I know Alisa. Sometimes it sounds harsh but there comes a time where the folks who CAN control the problem, do not.

Seeing the harsh realities, and having the ability to change, just may scare them straight if all else fails. And so far it appears that way with his brother. I make no apologies for telling the awful truth in certain situations. And yes, you have seen it first-hand, God bless you, so you know.

I do know what you mean though, seeing it in print is disturbing but we are here for the truth, whatever it may be. Hopefully he reads this, can't hurt at this point.

For those that want to keep the blinders on, you may want to skip my posts.

Again I wish him all the best, as I do everyone here.

Welcome to the forum, Sanch. Everyone who has posted is correct. (WD, an active drinker or druggie will not qualify for treatment or transplant. Smokers have to quit.)

It is your brother's choice. If he stops drinking, he can at least receive chemoembolization to shrink the tumors. This may need to be done more than once, so he would need to remain sober. To qualify for pre-transplant evaluation, he would need 6-12 mos. of documented sobriety (in the US, it is attendance in AA or approved counseling for 6 mos.) I had liver cancer twice, the second time necessitating a transplant...but thank goodness, I had been sober 25 yrs. at the time.

You need to give your brother this information straight, so he knows what he is up against. Let him know that there is hope, but only if he stops drinking. He probably can't do it by himself and I doubt that would be accepted anyway. If he chooses to continue drinking, let him know what a difficult end he will face...and it won't be far in the future from what you describe. He will develop more symptoms and die a horrible death.

Hugs,
Connie

Sanch , hopefully one of our members from the UK will see this post and reply . Here in the US it's required that we go through some form of substance abuse courses like AA or Therapy and have it documented each time we go for a six month period . I've seen some postings from the UK where that requirement is raised to 1 year before consideration for transplant . It almost sounds like you're not getting the whole story here . Usually doctors will try and shrink the tumors and that basically escalates his chances of receiving a transplant if they can be shrunken . I see no logic in why they would change stories so abruptly unless there is a underlying problem . Just guessing of course but maybe he tested positive for alcohol when they did his blood work. They tested me once a month randomly .

It's terrible he suffered the loss of his wife . Have you sat down with him and discussed what his wishes are ? Does he want to live ? I thought about giving up when I was going through my evaluation process and returning back to alcohol . It seemed my Hepatologist was looking for an excuse to boot me off the transplant program . Nothing I said or did seemed to make him content that I was interested in living clean and sober . It took a year of me struggling to earn his respect and assure him that I wasn't wasting his time . Alcoholics like myself aren't known for our ability to deal with stressful situations without falling into the bottle . My advice to you would be to find out what he wants and how bad he wants it . Help him find another doctor for a second opinion or, at the minimum, make sure what you're getting from your brother isn't a tale . I made it back from the edge of death and so can anyone else, provided they are willing to put up a helluva fight . He will need an advocate in his corner as the disease progresses cause things will soon get out of hand and possibly very nasty . He may lose the ability to voice his opinion very soon and you'll be the one making decisions for him .

Nose bleeds are fairly common and I suffered from them for a few years even after I'd stopped drinking . Find out what medications he's taking and let us know so we can figure out what's going on and try to help . You should be keeping an eye on him for signs of encephalopathy , This occurs when ammonia builds up in his system and gets into his brain causing dizziness , slurred speech or not being able to put a sentence together. Yellowing of the eyes and skin or jaundice . Tremors in his hands like shaking . Beware of blood in his stools , it's a sign he may be bleeding internally . You can bleed out rather quickly from this disease .

How are you ? Are you prepared to handle this should this situation get ugly ? You need to get your brother's affairs in order. I can't stress this enough . He needs to sign over his medical records to you. You need power of attorney to handle his affairs . Should this go bad it's best to be prepared ahead of time than dazed and up to your neck if something happens . Keep us posted on his and your situations please . We'll do our best to help as much as possible .

Ziff

Post Edited By Moderator (hep93) : 7/22/2013 12:26:46 PM (GMT-6)

Like Ziff and Connie I wonder if some tests were done (or results received) between doctor visits that meant your brother was not suitable for treatment or transplant? That, or as Ziff suggests a slip in his alcohol abstinence may explain the shift in the doctors approach.

In general as I understand it in UK docs do want a 6 month period of abstinence before consideration of transplant but everything hinges on the psychiatric assessment about whether someone is likely to drink alcohol after transplant. So 6 months sobriety is not enough but only the start.

We have a severe shortage of organs to transplant here (mainly due to low road death rates) so sadly some people are turned down.

As I understand it if a transplant unit decided he did not qualify for a transplant then he can ask for that decision to be reviewed by a different unit. But as he is drinking again that would not appear to be a route worth pursuing.

Sorry you are having to deal with this.

Ann

Sanch,
Have you spoken to his doctors, or is the information from your brother? It's possible he's not being honest, or is simply confused about what the docs said.