June 10, 2010

Ahh....treatment. I simply must talk about treatment. I have genotype 3a (very rare in the US) , which is a "better" type because it responds to treatment 87% of time. Standard treatment is pegylated interferon and ribavirin in combination, for either 24 or 48 weeks, depending on genotype. My first round of treatment in 2006 was for 24 weeks. About 50% of all people complete the treatment; many simply give up because it's a form of chemotherapy and it makes you really sick. But I got through all 24 weeks and worked full-time. Looking back, I don't know how I did it - I had many side effects: hair loss, low blood counts, extreme fatigue, nausea, psoriasis, thyroid problems. Every time they checked my blood while I was on treatment, the HCV was undetectable. I was determined to finish and I was confident it would work (87% chance is pretty good, right?). After completion of treatment, it takes quite awhile for your body to get back to normal but most people begin to feel pretty well at about 12 weeks and that's when they check your blood to see if the treatment worked. By 10 weeks post-treatment, I wasn't feeling well so we had my blood sent in a bit early. The results were a return of HCV to pre-treatment levels. That was one of the worst days of my life.

My hepatologist recommended that since I had responded to treatment (undetectable HCV), that maybe I needed to be on treatment a little longer and have a stronger dose of ribavirin. So, in September 2007 I began round #2. I wasn't fully recovered from round #1 - I still had psoriasis and I was weak but it was my only chance. My family REALLY wanted me to do it, so I agreed. I was still working (I don't know how) and the higher doses really got to me. I had all the same side effects as before plus a few new ones. By the time I was halfway through, I had to quit working - I couldn't even walk from the parking lot to my office due to being short of breath. I was like a walking zombie. I remember nothing about the final 3 months of treatment - I was flat out in bed. I was near death, my blood counts were so low that I was given neupogen to boost bone marrow and I was taking 12 different medications just to get me through the treatment. I was hospitalized 2 times during this period and I don't remember much, but I finished all 48 weeks. I did bounce back more quickly after the second round and waited for results of that 12 week post treatment blood test. The results were devastating: HCV back to pre-treatment levels. That was in August 2008 and my doctor gave me 2 years to live without needing a transplant. Well, it's almost been 2 years and I am still very much alive. I don't feel well most of the time and my liver is one big mass of scar tissue. Going through two rounds of that type of chemotherapy is not easy, but with my odds I gave it my best shot.