Friday, March 26, 2010

Karen's Personal Hep C Story

I found out I had Hepatitis C 2 weeks after I got married. I was 29. I went to get a wisdom tooth extracted and while I was knocked out- the nurse pricked her finger and they tested my blood. I havent thought about that in a long long time ( I am 39 now) but looking back I have to say- WOW. I cannot believe that random finger #### happened. I probably would never have known!

I was not at all surprised about the Hep C. I was a teenage runaway and junkie. I started heroin at age 16 and stopped for good at age 20. I actually felt relieved about Hep C because it wasnt HIV- which my brother, whom I had shared drugs needles with, had contracted a few years earlier. So, I hung up the phone and called a friend and told her I was too confused and didnt know what Hep C was but could she please look it up online and call me back. It didnt really seem like a big deal to me. (compared to HIV anyway) I felt embarrassed that I just got married to a very stable and very normal man who did know I had done drugs when I was a teen but probably didn’t know that I used them intravenously. Nine years had gone by and I was a totally different person- someone that didnt seem like theyd lived the way I had. Now all of this shame was back up again.

I went to the liver Dr. in Virginia. He was the top guy in the Wash, DC area. I joined Delphi forums. I was told I was a 3a genotype and did a biopsy that showed like a 2.5 grade or something. I started treatment. I was a newlywed and a new stepmother to a 10 year old girl. I was afraid of feeling sick and I was afraid of the emotional side effects of the ribovarin. In my family- I have lost my father and grandmother and uncle to suicide. I was afraid that I would become like them. So- after about 2 months on treatment, I started to miss pills. When I was told I was clear at 12 weeks or so- I stopped the pills and just did the shots. I was too young (emotionally) and just didn't care enough about myself to do the treatment.

That was 10 years ago. Since then, a lot has changed. My marriage ended up not working out after 5 years. I left the DC area and came to Los Angeles. I went to a liver guy and they told me that the Hep C was back. That wasn't a surprise. So- technically I am called a "relapser" but I really only did about 12 or 15 weeks on treatment or so. I got ready to do the meds again a few years ago. I lived by myself and got really down about "what is the point of life?" For many of us women- we hit that age where you have to decide- kids or no kids? I had four miscarriages with my husband and knew that getting pregnant would be hard if even possible and on the day I was to start meds - I called the treatment off. I couldn't bear to lose two years of potential babymaking time because of toxic chemicals in my system. I had to at least TRY. If it was in the master plan for me to be a Mom- then I would try till I was 40 and see what happened.

And we all know what happened next. I got pregnant. My Dr was shocked. I didn't even believe it until there was an actual person flailing around in front of me. I had a few moments in the deliver room where all I could see was blood and I was horrified that my Hep C blood was all over this place. Thats how Hep C is... you always have a little tiny monkey on your back. Here was the most beautiful moment of my life- and Im wretching inside that my blood is going to get all over my friends and family.

So here we are now. I am 2 months away from turning 40. My son is 2 years and 3 months. I started treatment 12 weeks ago and I take every pill and shot as directed. I had a huge viral load and I may possibly end up doing a year on tx even though Im a 3a.

This is not easy. I work from home and have had to take more work on to pay for the 1000$ a month co-pay. My child is home with me and he isn't talking yet but sure likes to scream really loud. I live with my sons father, as co-parents. I didn't think it was fair that we should split custody of such a young child so we decided to live together and its worked out pretty well. I am lucky to have someone to help me with my son. The WORST part of treatment for me is feeling like I dont have energy to give this guy the childhood he deserves. Zoo, park, train museum, Disney- all of those things take energy. But I do it. I've let Hep C take enough of MY life already ..I don't need it butting in on my little boys life.

Its been a long ten years with this. One fourth of my life has been spent with this little C-shaped skeleton clanking around in my closet. I have no idea what I will feel like when the meds are done. I have no idea what normal even is. I sure do hope to find out though!!

Thanks guys for listening. It feels pretty good just to put this out there. :)

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