Options and decisions

When people inquire about my disease they often ask what options are available to me. The truth is, at this point: Just wait until my liver fails completely and await a transplant. Having been a nurse I've seen my share of people who die from cirrhosis and/or it's complications. There's no way to sugar coat it - it's awful, horrible suffering and one of the worst ways to die. If you want to know details you can google it.

But I'm not to the point of needing a transplant just yet. There is quite a bit of excitement in the Hep C community about a new drug that has been fast-tracked by the FDA. Some are saying it will be approved next year, but my "inside sources" are telling me it may be as early as October 2010. The new medication is a protease inhibitor, when added to standardized treatment has shown promising results. The new med has even shortened the length of standard treatment.

I hope to see a specialist at a large medical center soon and have a full consultation to review my options. After having gone through 2 rounds of treatment I must admit trying yet another with the addition of the protease inhibitor does not excite me as the treatment is very difficult without it. But if I am a candidate for the new treatment, and especially if the treatment length is shortened I may just give it a shot. I know I can do it; I've done it before and even though I barely remember the last 3 months of treatment due to near-death sickness, it would be worth it if the statistics bear out. My family all want me to try, and their support is important.

However, I may not be a candidate for the new treatment. My liver is severely damaged and I have cirrhosis. This damage is irreversible, which means that even if I can clear the Hep C, I will always have a diseased liver. I simply don't know what options are best for me.

And I'm going to throw this out there as well; I have very mixed feelings about a transplant. I worked in an ICU that performed kidney transplants (much easier than liver) and I know that it's not always a walk in the park. I know that I could end up feeling worse, not better. An acquaintance of mine had 2 liver transplants for Hep C, and eventually died. He looked like the walking dead and I don't want that. Once again, I need statistics to help me make my decision. I think about how blessed I have been to raise my children to adulthood and live a really great life; maybe a transplant is not for me. I'd rather give that liver to someone younger than I who has the possibility of long life ahead of them.

I just hope I will have a better idea of the options open to me sometime in the next couple of months so stay tuned!