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Twila's Story

I was first diagnosed with Hepatitis C in 1993. I was 21 years old and had just graduated from college. Throughout college I had the same general practitioner and she had done routine blood work on me. Those results always came back with something "unusual," but we wrote them off because I was young, healthy, felt fine, etc. After I graduated she decided that I should see a specialist.

I went to see a gastroenterologist who took me off the birth control pill I was on to see if my liver enzymes would change. After more testing the enzymes were still high. The doctor did another round of blood work and finally determined that I had Hepatitis C. I was devastated. I thought for sure I had HAV too and that I was going to die. I had never used intravenous drugs or had a blood transfusion or anything – at least that's what I thought. That night I called my mom in tears and told her what I had learned. She was completely silent and crying and then told me that I had had to have blood transfusions after I was born. I was born 2 ½ months premature because she fell on ice. I had 3 or 4 blood transfusions in 1971 when there was no testing of blood. We determined that was where I had to have gotten it.

Again, I was terrified. Here I was in the prime of my life, starting a new job out of college, wanting to get married and have kids some day, thinking I was going to die. My doctor was great and really helped me come to terms with this. He then told me about a new treatment program of interferon that I could do. I had great insurance through my employer and was young so he figured I had a good shot to have this program work. It was not easy though. Three shots a week for 6 months. I hated needles (and still do). My boyfriend at the time had to give them to me because I couldn't do it. I even tried going to a hypnotist and that didn't work. One time, while on a business trip for a week, a woman that I traveled with was nice enough to give me the shots. I was pretty sick for the 6 months. I had constant headaches and fatigue. I was still working full time and traveling a lot for it. I almost gave up. Luckily I had the support of my family to keep me going. At the end of the treatments the Hep C was undetectable. Unfortunately at my six month checkup the virus was back. I was devastated.

At that point I kept going on with life. I had no outward symptoms. I didn't feel bad, tired, sick or anything. I moved to Santa Barbara in 1995 and met my husband 2 months later. I remember when he asked me to marry him I thought in the back of my mind that I couldn't possibly marry someone because I have Hep C. What if I die in a couple of years from liver failure? Before we got married I insisted that I have a liver biopsy so we could determine the damage to my liver. After it was done my doctor said that is was fine, I did have a small level of cirrhosis but that I was fine.

I got married in August 1999. My husband and I decided we wanted kids right away. I was worried though that I might pass this on to my kids. Neither my OB/Gyn nor the Pediatricians seemed as worried as me. My OB/Gyn said that if I was worried then I shouldn't breastfeed. Our fist child was born in February 2001 and our second in August 2003. At 18 months we had each of them tested for Hep C and neither of them have it. I was so relieved.

In 2004 I attempted to get life insurance coverage and was denied because of the Hep C. I was very upset and decided to call my specialist and see if there were any new treatment options going on. He had me do another big blood panel and determined that I had a really good type of Hep C (apparently 2B). He said I would be a good candidate for a new series of combination treatments with interferon and ribavirin. Of course I was scared. I didn't want to go through the treatments and relapse again. I was working full time with two small children. It was a lot to think about. Eventually I decided that I could always come up with a million reasons not to start a treatment plan and one really big reason to start it – I could be cured and never have to worry about it again. My husband and I decided that I would start it in January 2005. I completed the 6-month treatment program. I took my shots every Friday night and this time I was able to give them to myself. I was sick almost every weekend for 6 months. I was tired, cranky, became depressed, couldn't eat, had trouble sleeping, lost weight and eventually started to loose hair throughout the process. Most things I could take another drug to help with. I was taking anti-depressants and sleep medication. Again I had a lot of support from my friends and family. In January 2006 I had my six-month blood work done and the virus is undetectable still. I will continue to have my blood drawn and tested although my doctor said I don't have to. I feel great and feel very lucky. I feel like if I could take this treatment program while working and with 2 kids under the age of 5 that anyone can do it. Even though it was tough, it's over and I would do it all over again. I still wonder if it will ever return but I can at least sleep easier knowing that for right now I am free.

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