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HEP C w/CIRRHOSIS

by CINNs, Jan 29, 2009 05:45PM
Tags: cirrhosis
HI,  I HAVE  HEP C w/ CIRRHOSIS (GRADE 4 STAGE 4) AND I ALSO AM DOING THE PEG/ AND RIBAVIRIN. (11 WKS NOW) I FIND OUT IN FEB 10TH IF TREATMENT IS EVEN  WORKING. I'M REALLY SCARED, I'M 48YRS OLD AND HAVE GRANDCHILDREN I WOULD LIKE TO ENJOY FOR AWHILE LONGER. JUST HOW BAD IS MY CIRRHOSIS IF (STAGE 4 BEING THE MOST SEVERE) AND TREATMENT DOES OR DOES NOT WORK. THE DR.s DON'T REALLY ANSWER MY QUESTION WHEN I ASK THEM, THEY JUST SAY WELL WORRY ABOUT THAT LATER. BUT I'VE ALWAYS TOLD MY CHILDREN; "I CAN HANDLE ANYTHING AS LONG AS I KNOW WHAT IT IS THAT I NEED TO HANDLE". IF THIS TREATMENT DOESN'T WORK  I WOULD LIKE TO KNOW AHEAD OF TIME SO I CAN HAVE TIME TO EXPLORE ALL OTHER OPTIONS ( IF THERE ARE ANY) SO I'M NOT MAKING A DECISION WITHOUT HAVING TIME TO THINK ABOUT IT. I THINK ABOUT THIS ALL THE TIME AND I THINK IT'S BECAUSE I STILL HAVE QUESTIONS. PLEASE DON'T SUGAR COAT WHAT'S REALLY GOING ON AND JUST GIVE IT TO ME STRAIGHT.  
Member Comments (3)

by jmjm530, Jan 29, 2009 06:14PM
Within the stage four, there is compensated cirrhosis and decompensated cirrhosis. people with compensated cirrhosis often have few if any symptoms and can potentially live for many years without significant occasions. And that's without treatment. With successful treatment, those with compensated cirrhosis can look forward to seeing their liver damage potentially reduced. Perhaps down to stage III or even stage two. If treatment doesn't work, there are new and better drugs that will be out of trial very soon. We've had a number here were stage four and have successfully treated. We have others here were stage four, failed treatment, and are now either retreating with current drugs, in trials or waiting for the better drugs.

Guess what I'm saying in short is that you probably have a lot of options and that means a lot of hope.

I'm assuming you're treating with the liver specialist (hepatologist) as opposed to a gastroenterologist? That would be my choice, especially if I was stage four. they simply know more about the liver, more about hepatitis C, and more about treatment. At a minimum, you should least be evaluated by one, even if you stick with your current Dr., assuming you're not already saying hepatologist.

It's unfortunate that the doctors are in answering your questions, so maybe seeing another doctor for consult your run into one who is more communicative. just make sure you bring all your records with you, including your biopsy report, and optimally your original biopsy slide set.

Being in the dark is not a good place to be. You owe it to yourself and family to get some of your questions and concerns addressed. You found a good place here, but we don't have your medical records, and none of us are doctors.

All the best,

Jim

by HCA, Jan 29, 2009 06:15PM
To: CNNs
Cirrhosis is divided into two main categories;

Compensated-where the liver is continuing to do it's job

Decompensated-when it starts to lose funtionality.

Hep C cirrhosis can remain compensated for many years.

Cirrhosis staging is conveiently measured by the Child- Pugh system (google it)

If you have normal albumin,bilirubin and INR it is a very good sign.

Interferon treatment is not usually prescribed for decompensated cirrhosis so we can reasonably infer that you are at an early stage.

You don't have a death sentence.The treatment may or may not work.New and better treatments are in the pipeline.

The ultimate procedure is a liver transplant but my guess is that you are a long long way from even being evaluated.

The doctors saying they will worry about things later is not unreasonable

You will probably feel calmer if you learn a bit about your condition.

Ask your doc for copies of your blood work, biopsy ect and post them here and people will explain what it all means.

by jmjm530, Jan 29, 2009 08:03PM
To: Trinity
Yes, the potential is there, and I've heard it from leading clinicians with large patient populations as well as starting to see it in studies which are of course difficult to come by since most do not biopsy after SVR.
http://www.natap.org/2008/EASL/EASL_75.htm
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