Thanks, for your info. What should I be doing for my life to last the longest.... and what would be the longest without a transplant??
Bill has done a great job covering all the important issues.
Here are a few details you may find pertinent to your situation.
The MELD score is the standard measurement of the degree of liver disease. Do you know what your MELD score is? I am guess you have a MELD less than 19? And maybe lower then 14 or 15 which is a score that many transplant centers will want you to have to consider you for transplantation and have you evaluated to be listed.
Is you bipolar illness being managed properly? You want to make sure you have that in place for the future as living with End Stage Liver Disease (ESLD) is a very stressful and challenging thing to deal with.
As Bill said "Decompensated cirrhosis has traditionally been considered a contraindication to interferon and ribavirin therapy. This is because the meds are very powerful drugs which can further stress your failing liver and can cause acute liver failure. If that should happen you will need a transplant very quickly to continue living.
Most doctor's follow the credo "Do no harm" so they are not going to take a chance risking treatment because if you have a relatively low MELD score you are more likely to live longer without treatment. Should you try treatment you should be listed at a transplant center. The only doctor that would be qualified to manage your treatment with you would be a hepatologist at a transplant center. For patient with decompensated cirrhosis you need to be treated by a doctor who works with decompensated patients daily. It is a different animal. Once you become decompensated how your health is managed is critical to your survival. Even a minor infection for the general population could have deadly consequences for a decompensated cirrhotic.
I am very sorry to say that after the option for treatment is gone the only option is a liver transplant. You should start working with a center ASAP so they know you and you get comfortable with them. You as need a good hepatologist at a center to recommend you for listing for a transplant.
I am in a similar situation with a Child-Pugh of class C and a MELD score of 18. I have a hepatologist who is one the most renown transplant hepatologist's and hepatitis experts in the country. She said she will treat me with Telaprevir IF my MELD states under 20. This wasn't an easy decision to make but I will sign any wavers I need to as I am tired of having my life, career on hold for what could be years. So I have made the decision to risk liver failure in the hopes that I can beat this virus and avoid a transplant. Trying treatment for someone with decompensated cirrhosis can be is a life and death decision. I have had years to think about this and for ME I believe it is the right thing for me to do. But I wouldn't recommend it to anyone else who hasn't thought about this and lived with decompensated cirrhosis for a long time and has plenty of experience being with other who are waiting and have very high MELD scores and people who live with liver transplants.
I wish you all the best. Stay healthy. Stay strong.
Hectorsf
Hi Jojobean,
What if anything has your doctor discussed with you about liver transplant; have you been referred to a TP center for evaluation yet?
Once the liver begins to decompensate, it’s difficult to tolerate the interferon and ribavirin needed to clear the virus; as your doctor said, they’d likely cause more damage than good at this juncture.
There are exceptions to this; you might take a look at the following from U.K. and discuss the merits with your physician. Generally, though I think liver transplant will eventually be needed in the future at some point:
http://www.ncbi.nlm.nih.gov/pubmed/20871208
… Decompensated cirrhosis has traditionally been considered a contraindication to interferon and ribavirin therapy. Whereas, the same may be true for advanced cirrhosis, which is only successfully amenable to liver transplantation (LT), there are reports in the literature in which antiviral therapy was given successfully in selected cases of early hepatic decompensation with an aim to attain sustained viral clearance, halt disease progression, and expect potential (though, often, partial) recovery of hepatic metabolic activity…. (more in the article)
There are others in the forum that are currently dealing with the same issues you are on a personal level; hopefully they’ll stop by and share their experiences with you shortly. Good luck and take care-
-Bill