Stage 3/4 still drinking???

[joshua123]

My husband was diagnosed with Hep C in 1997, he most likely has had it for over 30 years.  He was offered treatment then but decided to wait for better meds.  He continued to drink and also went on the Atkins diet 2 or 3 times over the last 11 years.  In April he had biosey, they thought he had liver cancer.  Biopsey revealed Stage 3/4 Cir. he continues to drink daily and has not changed diet or anything.  His belly is so swollen and a few weeks ago he had a seizure, his memory is going and his mood swings are killing me.  He will not return to the Dr. is there anyone out there who knows what I should expect, how long will he be here.  Months, years???? I just need some answers.

[nygirl7]

That was the most succinct post I have seen in quite some time and 100% dead on.

You guys are right - but that's why you are the most listened sources that we have. You just plain old make sense all of the time and don't take any sides.

Kudos to you both.

[mikesimon]

I agree with Magnum. All efforts aimed at specifically diagnosing his liver histology are superfluous. If we assume that he is stage 3 and drinking excessively we all know the prognosis. I don't like to see people lose hope and give up so, I would do everything I could to get him to the doctor at the transplant clinic and have the doctor chart out his options. Regardless of stage, this man has to stop drinking and the sooner he does that the better. Perhaps, if he is shown demonstrable reason for hope, he might just embrace that hope and change his behavior. No transplant hepatologist is likely to initiate a serious discussion of liver transplantation with a patient who is currently drinking.
Mike

[kickboxingmom]

Are You Strong Enough To Handle Critics?

It is not the critic who counts, not the man who points out how the strong man stumbles or where the doer of deeds could have done them better. The credit belongs to the man  who is acually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes short again and again because there is no effort without error and shortcomings, who knows the great devotion, who spends himself in a worthy cause, who at best knows in the end the high achievement of triumph and who at worst, if he fails while daring greatly, knows his place shall never be with those timid and cold souls who know neither victory nor defeat.
                                                                                     Thomas Roosevelt

Hope this helps a little to those who help so much.When people ask a question,it's usually out of desperation.You guy's who take the time to answer is Really Heartfelt to most...
I really ADMIRE the people who have tx.and continue to stay on this forum and offer their expertise.No one has to do that.
Thank You To All who take the time to do just that.People Helping People, Txing, not txing, all who try to help ! That's what matters.
Tammy

[portann]

Sorry, joshua 123, that all these amazing people are engaging in a power struggle amongst themselves at a time that you must feel so desperate, wondering what to do next.

It must be a turn-off for you to see this unfolding 'debate' (quibbling?) when you were looking for reassurance and guidance more than anything else. Let me assure you that these guys are actually amazing, wonderful, dedicated and quite brilliant, even if it may not seem that way to you, walking into the thick of it like this.

Let me say that whatever condition your husband's tests indicate, I personally do recommend that you post them to our caring forum members. The reason I say that is I was completely wrong about interpreting my own results prior to treatment and my doctor didn't understand the level of miscommunication we had. Had I posted my results on the forum, I might have had feedback that would have changed my decisions. This is a real treasure of a forum.

[Magnum]

In my opinion, whatever the stage is, if he is still continuing to drink like there's no tomorrow, then soon there will be no tomorrow. If he doesn't stop drinking, have him prepare his will soon. There's no guess work here. He has to stop drinking or prepare to die. Period...

Magnum

[CoWriter]

He's having seizures.....which are related to encephalopathy.  Add to that the ascites and bad memory, mood swings, and the fact that he was thought to have liver cancer and I think we can safely assume that he has advanced cirrhosis.


I may be wrong but.....was that one of those "flack" posts DD was talking about?

LOL

[jmjm530]

Trinity: "Geez Jim, pay attention"..."You've had the board for many years and I'm not trying to dethrone you of your "guru" status"
---------------------
Trinity: "If you choose to take (the above) personally, sorry."
-------------------------------------------------------------
And how should I take the above other than ad hominem nonsense? Feel free to ignore me and this post as I will do my best to ignore you. Too many sick people here for these kinds of personality-rooted discussions.

[Trinity4]

You know what Jim, this is my time.  You've had the board for many years and I'm not trying to dethrone you of your "guru" status. I would have thought by now nothing anyone says or does surprises you.  I don't present myself one way or the other nor do I try to be all knowing -  it was an oversight on your part and I pointed it out.  If you choose to take it personally, sorry.

[jmjm530]

But "geez" HCA, "pay attention" ... you should have known that without "Trinity"  
having to point it out to you :)

Be well,

-- Jim

[jmjm530]

Yes, I missed that but was the "geez Jim, pay attention" part really necessary? Why not just give the info and forget the personal stuff. We all can't be as perfect and as smart as you present yourself.

[HCA]

I was right! The guy is under a doc at the transplant unit.See Trinity's post above.

[HCA]

'His belly is so swollen'(severe) ascites is a sure sign of decompensation.Also 'his memory is going'.
I've been wrong before,but grasping at the info we do have I would be surprised if this guy is not Child-Pugh B at least.
Sadly many such people or their family post once and we never hear from them again.

[Trinity4]

by joshua123


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joshua123
Female, 38 years
Lakeside - CA
Member since Aug 2008  



, Aug 26, 2008 02:05PM
He is being treated by a liver specialist at Scripps Green Hosp in San Diego, Liver and Transpalnt Department.

Geez Jim, pay attention

[jmjm530]

HCA: This thread lacks continuity and rife with misunderstanding.
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I agree here, and while you're probably correct, I can't see how you can say with certainty that the wife's husband has "decompensated" cirrhosis. I've seen many cases where symptons/tests results, etc, get altered in the translation. You "suggest husband and wife attend doctor together"  -- I couldn't agree more, and at this point it should be a liver specialist (hepatologist) which is unclear from prior posts if he is seeing one.

[copyman]

Jim's advice is very good, get copies of the biopsy report ASAP. Since your husband will not see the doctor the next best thing is to get yourself educated FAST!  It will make it a little easier knowing what to expect.
And by the way, even though there are no doctors here I have found out more about Hepatitis and liver disease on the forum then from most doctors I have seen. And one of the best people I have gotten advice from is jmjm .  I think he could actually treat HCV patients better then many doctors. best of luck to you and your hubby.

[HCA]

This thread lacks continuity and rife with misunderstanding.
The man in the original post clearly has decompensated cirrhosis.
The key point is he won't even be considered unless he quits drinking now.
Many of these cases won't (can't) stop.
Suggest husband and wife attend doctor together.

[jmjm530]

Do u mean 3/4 cirrhosis as in ESLD,  or 3/4 as in between stage 3 and 4, or do you mean 3/4 as in stage 3 out of 4 possible stages -- basically what I was trying to determine from joshua with as much tact as I had at the moment :) I was told I was between stage 3 and stage 4 and "transplant" was never mentioned and in fact I was told by a fibrosis researhcer that cirrhosis was still *probably* years off. Unlike Joshua's husband, however, I hardly drank at all. Hope this finds u well and most prob eating ice cream

[nygirl7]

PS Does anyone have any idea how soon to transplant a 3/4 cirrhosis is - what I mean is do you have to be 4/4?

I was just curious.

[nygirl7]

I thought honestly that Grace's post was well thought out and delivered.

Each of us need to make our own life choices but when someone is in serious denial and refuses to accept what they are definitely doing to themselves the only thing we can do in here is to help the spouse accept what is most likely come down the pike.  They need to be ready for their own sanity.

Anyone who at biopsy appeared 3/4 but is experiencing those symptoms and refuses to stop drinking...well they wouldn't most likely be 3/4 very long anyway. White washing whether the number is 3/4 or 4/4 well that's a moot point.

[jmjm530]

Yes, Yes, Im sure Grace has compassion toward Joshua's husband,  and apologies if it came off otherwise, but we all contribute here in our own way, including pointing out that the worst case scenario isn't always the case, as things here always do not get reported accurately for many reasons. Waz wrong with that? I sure hope Joshua understands this and will continue to seek whatever info or support we can offer here and more importantly, try and get more clarification and direction from qualified liver specialists.

[Trinity4]

Joshua:  His belly is so swollen and a few weeks ago he had a seizure, his memory is going and his mood swings are killing me.

I thought your post was very accurate and full of compassion. Based on what we have been told, with Joshua husband continuing to drink and experiencing classic symptoms of liver failure, I thought your post was wonderful.  Thank you for sharing.
Trinity

[jmjm530]

As to "support and compassion", not sure how referencing "End Stage Liver Disease, Hepatic Encephalopathy, Ascites, Varices" etc fits into that, given that her husband may have none of the above and perhaps may indeed be stage 3 (fibrosis) with some stage 4 scarring which does offer much more hope in terms of tx options and outcomes. That was why I suggested she might post the biopsy report while waituing for her doc as opposed to thinking the worse, which just might not be true. Certainly dont want to minimize her husbands condition but I think the compassionate thing mught be to offer some reasurance that he still is far from one foot in the grave, assuming that is what the facts really are.

[jmjm530]

Grace: You stated you're aware there are no doctors here, so I don't believe we really need a word by word accounting of your husband's biopsy to offer you what I think you're looking for which sounds like support and compassion.
-----------------------
Actually it seemed like she was looking for more than that, including clarification of the extent of her husbands damage of which she is giving an unclear account. Nothing at all wrong with posting actual data -- as opposed to hearsay -- until she can get things properly evaluated by a liver specialist.  More than that, it's to everyone's advantage to have their own copies of medical records and to take some time in trying to figure out what they mean, using this place as one potential but certainly not the overriding resources. Forums like this are for "support and passion" but they are also one of a number of sources to help educate ourselves.

[Grace724]

You stated you're aware there are no doctors here, so I don't believe we really need a word by word accounting of your husband's biopsy to offer you what I think you're looking for which sounds like support and compassion.

It sounds to me like you understand that your husbands situation if it continues on the path he is on will lead to a bad outcome. And it will. Drinking daily when you are aware that you have Hep C along with stage 3/4 cirrhosis is taking him down a path of no return.

If he is refusing to return to the doctor, then obviously there is nothing you can do for him other than be there and offer whatever help to him that you can. It won't be easy, as I can tell you already know. The mood swings will continue to get worse. His memory loss (most likely to do an increase of ammonia in his brain *google Hepatic Encephalopathy*) will continue to get worse. Eventually as the ammonia builds he will begin to sleep more and more and may eventually not wake up, that is the way it goes when it is left untreated. He could take a medication called Lactulose to help eliminate the ammonia. His swollen belly is most likely due to ascites, which is fluid build up in the peritoneal cavity (stomach) due to the inability of the liver to do its job. That fluid can be drained to give him relief, but it will also return. Most people who are having this symptom take diuretics and limit their salt intake. Everything that can be done to help him has to be done through a doctor and since he is not seeing one, he can't avail himself of these medications.

My advice to you is to google End Stage Liver Disease, Hepatic Encephalopathy, Ascites as well as Varices and learn what it means and educate yourself on what to look for. It will give you the best idea of what is coming down the pike for you and your husband. I don't know if there is ever a time in the day that your husband is not under the influence and not bogged down by memory fog that you could share with him what you've learned and get him to agree to see the doctor? But if there is, go to him armed with what you've learned and do your best to reach him and get his agreement to at least see his doctor and get the medications he can take to help him with his symptoms.

As Trinity mentioned liver transplant is always a possibility but your husband must be alcohol free for at least 6mos. to a year, depending on the transplant centers criteria. It sounds to me like your husband would need to stop drinking asap in order to give himself a fighting chance of surviving long enough to get a transplant.

I know this information may not be exactly what you were looking for, but no one, not even your husband's doctor can tell you how long he has. Reading up on ESLD will help you see how the disease progresses and allow you to reach your own conclusion about where he may be in that process. It will also give you the best explanation of whats to come and what to look out for.

My husband is Stage 4, grade 1 according to his biopsy in July. I can completely empathize with what you are going through. My husband did stop drinking in Feb. '08, he is seeing his doctor regularly, he is also taking Lactulose daily to help keep his ammonia level in check. The only symptom he has so far is the Hepatic Encephalopathy. His got so high that he ended up in the hospital barely able to stay awake a few seconds every hour. It took 5 days of large doses of Lactulose to bring his ammonia down and get him coherent. It was a very scary time. Thankfully that was my husbands wake up call. Unfortunately the years of daily drinking between diagnoses of HepC in 1993 to present did his liver no favors.

Even though my husbands outlook is not as grim as it could be, I also wonder each day what is down the road. How long do we have before he becomes ill with other symptoms? How long will he be able to work? How long before we can get him placed on the transplant list? How long will he live? It's an awful thing to live with but live with it we must.

Please continue to post here. There are others on the board like me who are not the ill one but the care taker of the ill one. There are many here who are full compassion and ready to give you a shoulder and lend an ear.

~Grace