Stage 4 Cirrhosis can be compensated?

[Marie2272]

My husband was diagnosed with Cirrhosis via liver biopsy. He is 65 years old. The liver specialist says the biopsy indicates Stage 4 cirrhosis. His fibrosis was also stage 4. But liver specialist also says his liver is compensated? How can this be? He has been prescribed lactulose, spirolactone, complex B vitamins. He continues to drink a 12 pack plus whiskey per day. His primary care physician tells him he has 2 - 5 years to live, his liver specialist says he could live to 80. Therefore, he continues to drink. He failed his cognitive testing. He is also now a diabetic. He also has left descending artery disease that is serious. No ascites to my knowledge, no varices. He does have portal hypertension. How can there be such a difference in physician opinions and advice? And how can stage 4 Cirrhosis be compensated? When I confronted his primary care physician about the specialist saying he could live to be 80 his response was “then ask HIM how long your husband will survive.” I already did! My husband will likely never quit drinking. I expect him to refuse treatment any day . I attend al-anon for myself and my sanity. Thanks in advance for your comments and experiences.

[AyrshireK]

I don't think they are telling you two different things as regards staging of his cirrhosis. I think one doctor has just interchanged the words fibrosis/cirrhosis since biopsy can't tell you the stage of cirrhosis (it's symptoms which determine this). Stage 4 cirrhosis is categorized as decompensated with bleeding from varices, +/- ascites. In the absence of bleeding varices or ascites then it's considered compensated.

Both doctors are saying this is stage 4 fibrosis (F4) which is cirrhosis or end stage liver disease. No one can say for sure how long his liver will remain in a compensated state, as he's already got other complications of cirrhosis plus other health issues he is going down a slippery slope if he continues to drink.

Doctors should be telling him bluntly, continue to drink and this thing will potentially kill you. Plus any chance of a transplant if it became necessary will be ruled out through ongoing alcohol use. Before someone can be assessed for transplant they need to be sober and compliant with alcohol services and prove they are committed to life long abstinence.

Look after yourself in all this.

Katie

[Marie2272 in reply to AyrshireK]

Thank you. It is very confusing when they say Stage 4 on the fiber study, then Stage 4 on the liver biopsy. It all sounds pretty bad, but then say the liver is compensated. I am assuming with the continued drinking it will decompensate at some point. I am trying to see into the future of course. For both of us. Sad to watch for sure. Best wishes.

[WayCas]

Interesting question. I have asked liver specialist the same question. I have HCC, portal vein hypertension and history of varices. But, he says liver still compensating. His criteria for decomposition is varies, ascites and high bilirubin. I know this is confusing but hope it helps. Wayne

[Marie2272 in reply to WayCas]

Thank you..I think I am expecting black and white answers from the doctors when there really aren’t any at this point.

[Supportinghubby]

Sorry to be blunt but my husband was told if he continued drinking he would be dead in two years. This was on the day he discovered he had cirrhosis and had gone to a&e vomiting blood (burst varices). He stopped drinking immediately.

You say your husband doesn't have varices or ascites but my husband was prescribed spiralactone for ascites. Carrying on drinking would be a very silly thing for him to do - his liver specialist needs to tell him this straight. Although he probably meant he could live to 80 if he stopped drinking. Hope you're ok, it's hard supporting someone with liver disease.

By the way, my husband is now compensated, coming up for 5 years since diagnosis.

[Marie2272 in reply to Supportinghubby]

Thanks for your response…ya, I am not sure on the ascites. He was prescribed the spirolactone by his cardiologist who was in such a hurry to leave, I was not able to ask questions. He was a bit of a jerk honestly. In support of the husband I use to have, I have told my husband I will be his friend as he really has no one else. He does not understand things well anymore so he needs an advocate with him in his appointments. It has helped to separate myself from being his spouse and from his drinking. Best to you.

[Rshc]

my partner has ascites controlled by spiro, one small varices that needed banding, never had a GI bleed. He is considered decompensated (although they believe due to improved bloods his liver is starting to re compensate). If your husband is taking Spiro that would indicate his has ascites controlled by medication. My partners bloods are improving slowly for one reason only, he stopped drinking on the day he was diagnosed 13 months ago. The liver can recover some function but if a person continues to drink they aren’t giving it the opportunity to improve. Even if he isn’t decompensated now it is only a matter of time if he carries on drinking. It’s so so unhelpful for a doctor to tell him he could live to 80 whilst continuing along the same path.

[Anthonysmate]

I don't like to be critical of consultants, they are doing a very special/ stressful and difficult job under very trying times, post covid. But saying anyone could live to 80, drinking that amount, indeed any amount of alcohol with that diagnosis, is a bit like saying all of us could live to 100, Theoretically we all could, but in reality and statistically its a non starter...

[Kristian]

Ok first things first, staging. The reference to stage 4 really relates to the degree of fibrosis, so F4/Stage 4 Fibrosis basically equals Cirrhosis or End Stage Liver Disease. Its essentially the same thing, just sometimes the terminology is switched to suit the situation. So when he says "Stage 4, Cirrhosis" it just means he has Cirrhosis.

Cirrhosis itself isn't really "staged" as such. Its either compensated or decompensated. Compensated just means the liver is pretty much able to carry out most of its normal functions to a degree where you can survive. That doesn't mean you won't get symptoms or that those symptoms won't get worse, but at that stage you can live for a pretty long time, IF WHAT IS CAUSING THE DAMAGE IS REMOVED OR TREATED. Decompensated, just means it no longer can and you are likely to die a lot sooner than you otherwise would. (You'll not really be given a time as no one can really tell, but generally you're looking at 6 - 18 months or so, but it can be longer, or shorter).

So, technically, both his doctors are correct, people can live a very long time, even with compensated cirrhosis. However, and this is the BIG HOWEVER, if whatever caused the damage continues, then further damage will occur and lifespan will drop as a consequence, usually quite significantly. If not, then the damage will continue to progress, the liver will decompensate and they will not be able to treat it. Stopping at that stage, will severely hamper his chances as he'll have to show that he has abstained for a period of time before they'll even consider transplant. That delay will really affect your chances!

Thats not to say people can't bring it back from that stage. There are stories on this forum from folks that have done that. But, thats a damn site harder and a damn site more unpleasant than stopping when you are first diagnosed. Trust me, the symptom of de-compensated cirrhosis can be very, very unpleasant. Certainly not something I'd want to go through again thats for sure 🤢🤮🤢. There's also many stories where the outcome hasn't been so successful, some quite recent.

He will have been given advice to stop drinking alcohol, everyone with a diagnosis of cirrhosis, irrespective of the cause, is told that. So, I'd suggest that would be a sensible place to start. If not, then maybe start discussing funeral plans. At least then that stress will be taken away when the time comes.

I hope that at least provides a bit of helpful insight and reduces some of the confusion. Its very easy to only hear, or more commonly remember, parts of consultations when you are there. Its also natural to focus on what we want to hear, and remember that, instead of what we need to hear. So its not surprising your husband has latched on till the "live till your 80" bit.

Good luck to you both.

[Marie2272]

Thank you for your response. Yes, comments from primary care doctor and cardiologist telling him he has two years to five years to live if he doesn’t quit drinking he views as “scare tactics”. I quit trying to persuade him years ago as it is all unheeded. I believe he will need a strong taste of pain before he will listen. Maybe not even then. Therefore I have taken him to the lawyer already to do his Will and final arrangements, as you said. I have told him I will conduct myself as his friend but nothing more. He has long distance friends who call to check on him, (retired law enforcement) but he lies to them about how he is doing. He has pretty much driven everyone else away over the years. He has no one, so I can do that much for him (be his friend) I think. We live two different lives now.

[Kristian in reply to Marie2272]

Looks like you have things pretty well in hand and seem pretty switched on. Thats great. Its also great that you will at least be there as his friend. He will need that even though he may not realise it. It will no doubt be tough on you too, but he will need someone there for him. Good luck to you. You have my best wishes.