This is my story of my battle with hepatitis c……

Thinking back, I remembered in 1999, out of the blue at my teaching job, my ankles swelled up like they never had before. I went to our "family doctor", had blood drawn and they noticed my BP was a little high so they attributed that to the swelling of my ankles. They gave me a low dosage of BP meds with the water pill in it and the swelling later went away. My CBC came back with elevated liver enzymes.

The words."Oh it's not that high, we'll watch them" still echo in my mind. It would be 3 more years before he had the knowledge to do the Hepatitis C blood test.

It was May 2002. I went back to the "family doctor" for a routine checkup. . I had been feeling tired, grouchy and alienating myself from those who I loved for so long, I thought "Why do I always feel blah?". He took blood and called me in for the results.

He said I have Hepatitis C and suggested I go to a specialist, a gastronologist. I could tell he knew nothing about the virus. Scared and confused I went home. From then on I realized, I was on my own.

Through my own research, I found out that a gastronologist is good but a Gastro/Hepatologist is better! With my sister by my side, we found the best doctor and made an appointment. In the meantime, I read up on the virus and was obviously quite nervous. You can read all you want about this virus but nothing can prepare you for the ride ahead.

When I finally met my doctor, I saw pamphlets on Hep C and degrees in Hepatology and I finally felt some peace. He knew what Hepatitis C was!!!

He took my blood to determine what Genotype, and scheduled a liver biopsy. I canceled 2 apts. Before I finally submitted to the biopsy. All my fears were for nothing. This procedure is painless. It was my fear of the unknown that scared me. Having had 2 breast biopsies in 1999 I couldn't understand why this one was different. Maybe it was because my husband and I were separated and he wasn't with me like the last time, but this time I was scared. I think its because this time, I already knew something was wrong too.

The biopsy came back saying I am Genotype 1, Chronic Hepatitis Grade 3 ( the degree of inflammation) & Stage 4. ( When scarring results in long bridges of fibrous tissue that separate nodules of normal liver tissue, it is called stage 4, or cirrhosis.)

The biopsy also showed prominent inflammatory cell infiltrate in the majority of the portal tracts with interface hepatitis. There is also focal lobulitis. In layman terms, it means the virus was now inside my liver, (Interface Hepatitis)so my chances of clearing aren't that great. I could take treatment and it could slow down the cirrhosis a little but there's no cure for cirrhosis. It's impossible for the medicine to kill the virus cells once they're inside your liver.
So much to take in, but I remained strong.

I went online to Janis and Friends website and still go there to this day. I tried the "live" support groups in town but found they didn't do anything for me.

It was Oct 2002 when I did my first shot. Like a chicken J I went and had the doctor do it. My son came with me and though only 16 at the time, was and is my source of strength. The second shot I had gone to someones house from the support group. By shot 3, I was on my own. It was Pegintron/Ribavarin and I shot it the same time every Sunday night.(After the Sopranos). I find this works best for me as it establishes a routine. I also organized my pills (6 a day plus a BP pill plus a zoloft) in my little handy dandy pillbox. Id be lost without it. The longer you're on this medicine the more you forget. I didn't want to mess up. I wanted to do it right. I drank all my water, went once a month for my CBC and every 3 months for my liver cancer test and I go once a year for my down the throat test to see if I have varicies.

I did this for 48 weeks and remained undetectable all along! Hallelujah! Not so fast. 3 weeks after I stopped the medicine the virus came right back.

I was lucky where my WBC never went down past 2.1 and my reds were always good. I guess this plus the fact that I made myself tolerate the tx and kept a strong mind made the doc decide to put me back on.

Six weeks later, I started Round 2 (Dec 2003) .

This time I am on Pegasys/Copegus. I did my 48 weeks, cleared all along again and this time stayed clear for my 6 week PCR. Hallelujah! Not so fast. Doc calls me and says he used me as an example at the hep convention he attended and studies show for 1A's 72 weeks is the way to go. While I was still clear I immediately went back on. I am now on my 53rd week and will stay on this until June 12th.

It's a daily struggle. I feel like I waste half my life laying around from the feeling I get from the shots and the pills. Im not getting any younger and I feel like Im wasting days. Ive worked all along, but work only 3 days a week. I am a hairdresser and am on my feet for 9 hours a day. No one knows I have Hepatitis C. It is better left unsaid. I prefer "liver disease" or "cirrhosis".
Doing this treatment is a week to week thing. I don't sleep too well at night, and wake up tired a lot. I prefer not to take any extra medications. I nap when I need to and do what I can. My quality of life has changed dramatically. While on this medicine you can get out of breath just by tying your shoes. I always was so spontaneous and loved adventure. Now I hardly socialize and rest alot from fatigue.

Support can only come from other people so much. I am fighting this with everything Ive got. Everytime I get sick of being sic or sick of this treatment, I think of little children who have cancer or other people who don't have the love I have or the kids I have.

No one can tell anyone what is the right course of treatment. Your doctor can only make recommendations on what he would do. You really have to think for yourself and do a lot of soul searching. For me, if doing this treatment gets rid of this virus, Ill do it.

Had I not gone back on for this additional 24 weeks, all this time Id be wondering if the virus was back. Now whatever is in my future, when June 2005 comes, I know I did 72 weeks this time. Its been a long road so far but somehow you find strength you never knew you had. Dont dwell on being sick, be glad your not worse.

I long for the day to be off treatment, be myself again, whoever that is. I haven't been myself in
over 25 years so Im anxious to see who I am.:)