stage 4 liver disease

[Wilko1956]

Hello out there! I’m 51 and was diagnosed with Hepatitis C just a few weeks ago. I had a biopsy last week. Today the doctor told me it is stage four liver disease. This is my first post so I would like to know from others what works and what is available to me. Again many thanks and hope to hear from you all. Best wishes-Willy

[ILuvWilko1956]

Hi everyone! I am Wilko1956's girlfriend of ten wonderful years and I am devastated about this diagnosis. All blood work that Wilko did came back as elevated liver enzymes and thus he was not able to donate blood. Doctors dismissed any talk of hep c but here we are. Speaking positive things in to existence, Wilko has always been active, alert, and more of a social butterfly than me in his 51 years and I'm 27. It has always been me keeping up with him so don't let his age fool you! For about a year now I noticed when Wilko1956 came back from trips he was fatigued and his whole demeanor changed so he went to my university's clinic for blood work. Later they referred him for a colonoscopy and biopsy. I was aghast when during our last trip to the market he asked to sit down while I was checking out. That's not him.

I am accompanying Wilko1956 to his doctor in a couple of weeks and I assure you I will be prepared with questions, printouts and types of treatments to get a regiment underway. I need to know how to proceed. My concern is with stage 4 liver plus hep c, is this where you make final plans or is there still hope to live a normal life, within reason? I gather Wilko1956 will need to be monitored indefinitely but is this debilitating?

I've also heard of stage 4 referred to as end stage liver, but the doctor never mentioned end stage, only stage 4 as in the worst shape of the liver can be. Is stage 4 the end stage or simply the degree of damage where you can treat and move on? As I said the doctor never mentioned end stage of anything, just that there was significant scarring and fibers. Obviously we are hit hard and are digesting it all for the moment. I will probably think of more later but all I can say is I love you Wilko1956 and don't forget that you've always been the comeback kid! We're going to be alright!  

[GoofyDad]

I thought I would chime in here. I treated Hep C with 'Mild Cirrhosis' - including low platelets of 115 or so. I certainly developed low blood counts on treatment, but managed quite well, and acheived SVR.

I was a geno type 3a, which has a starting probability of 80% or so. A top-flight hepatologist gave me a starting probability of 60%, "If you take every pill". Based on that we can infer that his opinion is that early cirrhosis negatively impacts your odds by 25-30%.

I believe HCC incidence to be 5% per year - so that can become a significant number when viewed over a long period.  

Also - as someone noted above, your early days on treatment will be a good indicator of your chances of SVR.

Lastly - BMI is not an insignificant factor in the success of treatment. Dropping some weight now would be a good thing. I understand that it's not easy.

Good luck to you.

[Bill1954]

Hmmm… this Swedish study from 2006 paints a slightly different picture regarding HCC rates in cirrhotic patients:

http://www.hivandhepatitis.com/2006icr/ddw/docs/063306_a.html

“1016 patients were diagnosed with liver cirrhosis during the study period; 69% were men and the mean age was 60 years.
Alcoholic liver disease was the most common cause of cirrhosis (45%), followed by hepatitis C (10%) and concurrent alcoholic liver disease plus hepatitis C (11%)
19% of liver cirrhosis cases were due to other causes, and 16% were cryptogenic (of unknown etiology).
During a median follow-up period of 19 months (range 0-118), 86 cirrhotic patients overall (8.5%) developed HCC.
HCC occurred in 27 out of 452 patients (6%) with alcoholic liver disease, 17 out of 102 (17%) with hepatitis C, 16 out of 115 (14%) with both, and 26 out of 347 other patients (7%).


Bill

[Wilko1956]

YOU ROCK!

[Bill1954]

Pardon me; the incidence of primary liver cancer seems to be about 5% in cirrhotic patients.

Bill

[Bill1954]

1) The HCV genotype will be determined by blood test; if you’ve already had a biopsy, the doctor most likely has already ordered a genotype test. Ask him for the results, and consider starting a file to keep all your records in.

2) Optimally, you should achieve and maintain a healthy body weight consistent with guidelines provided by the American Heart Association or the American Diabetes Association (BMI <25). There is a growing body of evidence that obesity, as well as insulin resistance reduce HCV treatment response.

3)
a) Yes, a diagnosis of cirrhosis does put you at in increased risk for HCC (Hepatocellular Carcinoma), or primary liver cancer. The rate of increase is about 5%, however.

b) Treatment response is dependent on many factors, the primary one is Genotype. Statistically, Genotype 1 patients are successful about 45% of the time, genotype 2 approx. 80%, and genotype 3 70%.

4) If you “get rid” of the virus with treatment, you will likely halt any further damage to your liver, assuming that your cirrhosis is currently compensated. Also, assuming that you have no other co-morbidities such as fatty liver, etc. Getting rid of the virus is termed SVR (Sustained Viral Response).

5) The best thing you can do for your health right now is to achieve SVR. Again, depending on the stage of your cirrhosis; you might be able to halt further damage, and in some cases, a modest reversal of damage isn’t unheard of.

6) Unless you achieve SVR prior to transplant, the virus will universally return to the new liver. However, some patients are able to achieve SVR post transplant. We have a member here that has one that, along with others.

“What am I missing”? If you haven’t already, take a look at the following site:

http://janis7hepc.com/

Excellent site to begin your education; just click on any item of interest in the blue box. This will answer most of your immediate questions.

Best of luck to you going forward, and let us know how things proceed—

Bill