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.

June 9, 2009

I didn't sleep well last night. That's probably another Hep C related thing, but it could also be due to my age (perimenopausal). I am hoping for a better day today, but that's not up to me. I just have to get up and get moving then take it as it comes. One of the most difficult aspects of my journey has been the overwhelming sense of loss I've had. I've lost my health (which was always excellent), my ability to work in the way I'd like, my ability to be a reliable person, my dreams and goals for the future and most importantly HCV has affected my relationships. Some people just can't hang in and be friends with a "sick" person, especially when it's a long haul. I'm at 4-1/2 years now. That's a long time to be sick.

It's especially difficult for my family. I haven't told them about the blog and probably won't. There's a Universe of topics that are censured in my family and they are all related in some strange way to my disease.

It's another dreary day outside which echoes the way I'm feeling on the inside. I'm hoping the sun will come out and I can have a turnaround soon.

June 8, 2010

I've had 5 full days in bed now. This is what HCV is like for me - I have periods of feeling relatively well followed by periods in which I struggle. My symptoms are body aches and pains, nausea & vomiting, diarrhea, horrible headaches and pain in my right upper abdomen. The worst is FATIGUE. It's not one of those things that are simply "mind over matter" and you can force your way through it. I've found that I must listen to my body and when it says rest, I REST. I have many ways in which I cope, but for the most part - HCV has ruined my life. I'd like to hear your stories and try to develop an online support group for those infected with HCV and those who care for people infected with HCV. As a Nurse Practitioner I can also offer some helpful tips for symptom management.