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End Stage Cirrhosis and Kidney Failure

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Posted 4/26/2013 2:24 PM (GMT 0)
Hi I'm new to this forum and this disease but would like some advice. I applogize for the length of this post in advance.

My father in law has been diagnosed with alcholic ESLD (only 10% liver functioning) kidney failure and irregular heartbeat. He has been hospitalized once with fluid retention. They gave him Lasix intravenous to pull some of fluid off. His gastro Dr didn't see him in hospital only the staff Dr and kidney Dr came. The staff dr talked to us and explained he was in stage 4,if he stopped drinking 1-2 years at best, if he didn't 6 months or less. But in his opinion he leaned more toward the 6 month mark. We followed up with his gastro doc this week, she was only concerned with his salt intake. When asked what stage she said maybe a B or C but probably more like a B. She even said his liver would rejuventate. I made sure she had read the report from the hospital also. Yes, we are changing gastro docs!

I guess my questions/concerns would be:
I am confused about stage 4 or stage B. I thought it was graded like 1, 2, 3, 4?
Why would we be getting very different reports from the docs?
We are very comfortable with our GP and are seriously considering just letting him treat the symptoms. If we went to a specialist would we have a different outcome?

I would appreciate any and all the suggestions you may have to offer.
Posted 4/26/2013 2:54 PM (GMT 0)
They have a Child A, B and C score. I believe MELD is used more for transplantation, but some places also use the Child grades to determine the severity of cirrhosis after it has been diagnosed.

http://www.mdcalc.com/child-pugh-score-for-cirrhosis-mortality/

You will hear from alot of people. From what I have read, it is hard to grade out the severity of cirrhosis. Also, find a Hep doctor, not just a GI doc. Make sure it is someon you are comfortable with.

The specialists are the ones who will refer him to a transplant center. He needs 6 months documented sobriety.

You will get alot more information from others who know alot more about this part of the disease. Check back often, someone will respond quickly.
Posted 4/26/2013 4:44 PM (GMT 0)
Bypep , Hello and welcome . When diagnosed with this disease originally back in early 2008 I had similar experience with doctors conflicting . I don't think there is many G.I doctors with the knowledge of Hepatic liver disease to be able to properly diagnose it or it's stages . As Syxx mentioned you need to get him to a Hepatologist ASAP .

 A few things you need to see about early on is the possibility of Social Security and Medicare / Medicaid , It's getting harder to get reasonable healthcare without insurance . Get the ball rolling quickly in this area . Take notes at his doctors appointments when you go with him so you wont forget details . Obtain and keep copies of all his medical records as some of us have learned that these papers can be lost in hospital shuffling from desk to desk ( Keep back up's ) . He MUST get himself into a alcohol treatment program ( AA or Psychological ) is required in every case I've seen with alcohol related issues ( They ain't gonna take him seriously until he puts forth documented effort himself ) . Documentation means getting six months of consecutive verified sobriety from AA or a doctor .

 I myself am a non practicing alcoholic and was diagnosed with ESLD and Kidney failure . I had severe chronic ascites issues and the diuretics didn't do much to resolve the issues and subsequently lead to me having to get TIPS surgery . I am currently no longer considered for transplant listing but had been on it for almost 4 years prior . The liver does not regenerate . It can however stabilize as it has with me . Taking meds and following doctors orders can add years to his life . I have roughly 10% liver function and the medications compensate for the unrepairable damage I've done to it . Your dad has a chance to beat or cheat this disease but it will be no easy task and he has to want to fight it . Sadly nobody I've seen so far has been able to convince anyone who drinks alcoholically to quit . This will be something you can't help him with . The decision to quit and sticking to it will dictate how well his treatment goes .

 Ziff    

Post Edited (A.Ziffle) : 4/26/2013 10:47:08 AM (GMT-6)

Posted 4/26/2013 5:32 PM (GMT 0)
Hello Bypep,

Welcome to the forum. This is a very active forum and there could be a lot of important information for you and your father in law here.

I am a co-moderator, partners with a man affected by liver disease...he drank alcoholically since he was a teenager, had Hepatitis C, and also had a tumor on his liver... He pretty much decided to drink himself to death. When he got the brilliant idea to quit drinking and outlive the Hepatologist prediction he wouldn't last 3 months (this diagnosis was given in October 2010)

The liver, or at least the pieces that are not ruined by fibrosis, can do some regenerating. 10% left gives him the gift of time...if he wants time. If you read back through the posts you will hear the sad tales of loved ones who beg and cry and threaten and leave and stay and cry some more. But until their loved one WANTS to quit using alcohol, they will wind up dead.

Not everyone, just the ones who's livers are cirrhotic. Each of us knows folks who have smoked and drunk whiskey into their 80s and 90s without problems....they don't have OUR loved ones livers...

If he wants out of this predicament....take him to a real Hepatologist at a major medical center (look up transplant hospitals, all the good hep docs work there, even if he isn't thinking transplant).

The only way to get a TRUE staging report is to do a liver biopsy.

And yes, all the docs can do is manage the symptoms and keep the patient as comfortable as possible until the liver is completely decompensated...and then they die...sad but true. If he can keep that little bit working he has more time.

End stage has more that a little fluid on the belly...the kidneys don't work right...there is a mental status problem called hepatic encephalopathy where the ESLD patient is confused often beligerant, night/day sleep cycle reversal, endless sleeping sometimes with coma, inability to eat much, lots of edema, etc. It is not an easy down hill slide.

My best to your family....

Mama Lama
Posted 4/26/2013 11:15 PM (GMT 0)
Without a liver biopsy, I question how accurate this diagnosis is. As Ziff said, get him to a hepatologist quickly.
Posted 4/27/2013 12:13 AM (GMT 0)
Thank you for all of your suggestions! We have an appointment Monday with the GP, we will ask about a hepatologist.
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