(((((((Conch))))))) All I can say is I hope you get some answers and to send you a big hug. Keep fighting, you are worth it!
Check out the trials at www.clinical trials.gov. It is not common to trial decompensated patients, but I have seen a few study results, so it's not unheard of. It is possible to treat decompensateds with very careful monitoring but if your initial interferon TX was not successful, things may not be a lot different now (though basic treatment has improved with weight based riba dosing and peginterferon). The protease inhibitors can get results in poor responders but they will not be available until late 2008 and you'd still have to find a doc willing to treat a very sick patient. I'm so sorry you are in such a 'stuck' place.
About all I could suggest is bcoming fanatical about everything you come into contact with, like alcohol, NSAID's, cleaning products, pesticides. I have heard of decompensated cirrhotics who quit drinking and backed at least out of decompensation back into compensation (which is a decent life). Do whatever you can to take all stress off of liver and research all of your regular meds to be sure none can possibly be related to liver damage. Good luck; keep hanging in there.
Hi Conch,
I had a feeling from your user ID that you were a fellow Floridian. I was raised in Ft. Lauderdale (not far from you at all) and I currently live near Vero Beach. I also got hep in the 80's but I'm a bit younger than you (I'm 49). I have treated twice and relapsed both times. I am in the beginning stages of cirrhosis and will be heading up to Shands at the University of Florida (I've been there before) on 7/21.
Whice Univ. did you get seen at, I'm going to guess it was in Miami. Anyway, I just wanted to say your not alone in the sunshine state.
Mouse
Sorry to hear of your health problems-so typiical of advanced Hepatitis C!
Have your doctors mentioned a liver transplant?
Your symptoms describe what is called decompensated cirrhosis and ant-viral treatment even with new drugs may not be the only option.
Livers are given to people who need them most using the MELD scoring system which you can look up on the internet.
The new drugs will be out in 2011 which is more like two years than 'a few years'
As you are seeing top doctors they should be able to refer you for evaluation for transplant at the appropriate time.
Hope things start to improve for you!