November 30, 2013

My Story of Strength and Hope with HCV

November 30, 2013


I was born in 1984 and when I was 8 months old I was diagnosed with AML- Acute myelogenic leukemia. I underwent a heavy regiment of chemotherapy and received blood transfusions. Those things alone cured me of my leukemia and I was in remission from that when I was 2 years old.

When I was a freshman in high school, I found out I had hepatitis C. At that time little was known about it. I went and saw a hepatologist and they said I wouldn't need to undergo treatment at that time.

My freshman year high school biology teacher pulled me aside after class one day and asked why I was jaundice. I told her without thinking about any issues that I had hepatitis C. She pushed her wheeled chair backwards into the chalkboard and said I couldn't be at school. She literally wheeled herself over to her telephone and called the principle's office telling them I needed to immediately go over there and talk with the principle and the nurse about being pulled out of school. They in turn called my parents, my mom came to the school and explained that hepatitis C is only transferrable through blood, so it was of no concern. The teacher insisted my mom and I were mistaken and I needed to leave. We left that day, and my mom (who also worked for the school district) went to the superintendent at the school board for the district and explained that the teacher was being discriminatory and if anyone should be "expelled" from school, it was her. Sure enough, I stayed and she left.

Somehow or another, word got out to my friends, my boyfriend, and basically every kid in the entire school. It seemed to me at the time like the gossip and lies about me had spread like wildfire. No one would come near me, everyone was scared to be around me other than two senior girls I became friends with. So, I sunk into a weird funk and just spent time with them, always looking onwards to my usual group of friends. I ignored the comments when I was in swim team practice that they hoped the chlorine would kill any way of me giving them hepatitis. I ignored the kids who purposely sat as far away as they could in class from me. I ignored everyone except those two girls that be-freinded me through it all. Freshman year ended for me and those two graduated. The entire summer I spent alone, mostly in my room. I didn't want to talk to anyone, not my parents, no one about it. That is until I got a call from a long time friend growing up (who went to a different high school) that his dad had hepatitis C and end stage chirrosis and needed a liver transplant and he needed someone to talk to that understood. So, we started hanging out and in a way we found peace and hope in each other away from all the negativity of everyone else. Sophomore year came and I was dreading it every day that got closer. This time around I knew I'd have no one to talk to period, and it was depressing. My grades started slipping, I didn't care about school, I didn't pay attention to anyone or anything in class. I just remember sitting in every class, in the back row corner, in silence. When semester grades came out, my counselor told me I'd have to most likely take at least one extra semester of school because I was falling behind. She also had me start talking to a senior counselor. He had non-hodgkins lymphoma and was so kind and became a very good friend of mine. I found myself hanging out with him and trailing behind him like a puppy dog wherever he went, whenever possible at school. I stuck it out until February that school year,then got a call from a friend outside of school I'd also grown up with that she was going to be homeschooled through a charter school as of the very next day. I took that as my sign to get the heck out of public school, and so I did. I ended up graduating a year early with a 3.8 gpa, and got through 3 semesters of college while in school.

I met a guy in college and we ended up in a 3 year long relationship. Meanwhile, my parents split up and my mom moved away. My dad got together with another woman and basically all of this happened when I was 17. I started treatment for hepatitis C, per my new gastroenterologist. I went on what was available at that time- the double therapy - interferon and ribavarin. According to my genotype (1a) I was supposed to be on in for one year. My white blood cell counts plummeted to nearly zero and I was put on neupogen. While they did raise up, it was still in the danger zone, so I was cut off treatment at 6 months. I was basically in bed for that entire six months with no energy and extreme pain from the medication.

I went through a few year period of self medicating with street drugs of all varieties. My boyfriend and I split up, and I moved to a different place on my own. I already had a promising career under my belt which I managed to hold onto through all of it.

When I was 20 years old I met a couple and another guy who were thinking of leaving the town we lived in and travel all over. I was intrigued and interested in coming with them, but at the same time scared to leave my "normal" life behind. So, they headed out on their own without me. It wasn't long before one ended up in jail, the other went back home and the third I literally ran into when walking around a corner. I was shocked to say the least to see him. He told me of all the events, and I ended up taking him in. He slept on my floor in my room for a few months. We ended up getting into contact with the one that had been in jail and about to be released. We ended up leaving together and meeting up with him. Once again, the fellow that had been in jail was arrested again after a few days. I lost my car in the whole ordeal and found myself with my friend who has been with me on my bedroom floor, alone and on the streets...homeless. We found a quiet area and a mattress and slept in that little place for a few months. Meanwhile he professed his love to me on the city train. He was always such a quiet guy and blurted this out one day out of the blue. I was speechless and neither one of us said anything for a few days. I finally spoke up and told him I loved him, too...and so our relationship began.  In no time I got pregnant. I quit my drug habit immediately. We lived on the streets for the first 7 months of my pregnancy and took a trip halfway across the country through all of it. We ended up back at my mom and now stepdads house.  He got a job, and before we knew it, our daughter was born. Due to hepatitis it was recommended I have a cesarean- scheduled.  I had a cesarean, but she was born a month early. She spent 9 days in the NICU, but came home finally and continued on to grow up to be a healthy child as she is today.

Her dad continued his drug habit, lost his job, and I went back to work 2 weeks after I had her. We ended up leaving the area my parents lived in and moved back to where we started. That ended in a violent episode between him and I, so I went back to my moms place with our daughter. He followed us there, claimed he had changed, and was let back in. We were still living at my parents when there was another violent episode that nearly ended in me losing my life. Instead, it ended in him going to jail. He got out and told me I had to come with him or he would take care of me for good and take our daughter away from me. So, I complied and left with him. Again, we returned to our original home area.  We then travelled further north and landed in Portland, Oregon. There was more and more violence coming from him and I finally mustered up the courage to leave him. I got a restraining order against him, involved child protective services, who took legal custody of her until I could gain sole custody of her.  He apparently, took off to the east coast and I never saw him again. A year after the last time I saw him, he committed suicide with a cocktail of drugs in his system. The coroner said he also had hepatitis C, and considering what drugs he had in his system, most likely contracted it from IV drug use.

I spent about a year on my own until I was introduced to a man who I started dating. After about a year, we got married, and right around the time we got married I got pregnant with my now youngest child. We moved to a different area of the country together, which, after 6 months failed and ended in abuse on his part towards me and my oldest daughter. I gained full custody of our daughter, and have had custody of her since. We moved back to my home town and I tried to start over. One thing led to another and i found myself with two children living in my friend's parents house.

Not long after I was living there I met a homeless guy, who also had hepatitis c. We ended up getting in a relationship, moved to a different, then moved to where we are now. After many years of total lack of insurance, I am finally able to have insurance and start to take care of my medical needs. It's come out of the woodwork that I also have fibromyalgia, long term issues from chemotherapy, degenerative disk disease, cervical disk disorder, Raynaud's Syndrome, hyperthyroidism, hormonal issues, scoliosis, sciatica, vitamin deficiencies, and the list goes on. He couldn't handle trying to take care of me and my medical issues and the children, so he left. I am glad for that. As stressful as it may be at times to be a single parent, I am free, I am happy and I have my children and we share an unconditional love and unbreakable bond.

I'm taking it one day at a time, like I always have. I've found looking back never does any good. Looking forward can be stressful, too, sometimes. But looking straight ahead, or sometimes down at your feet to be sure ya still got them planted on the ground firmly is the only way to go. Adventures, crisis, death, sorrows...this is all a part of life...a part of my life I never would have experienced had the doctors not saved me in the beginning when I had leukemia. Good bad or indifferent I wouldn't change anything about my life. It hasn't been easy, and it may get harder from here but I'm not going to worry about what will come. I just worry about today, and am grateful I woke up this morning and made it through another day with air in my lungs. I always look at it as no one's life is truly any worse or better than the next person's- we all have learning experiences, challenges, love, hope, sorrow, and everything that life can throw at us- but they are all our experiences and we can embrace them and take them in the best way we can and learn so much about others and ourselves. No matter what happens in your life, you have to fight for yourself and protect who you love and that will give you undying peace and happiness. I am thankful for each and every day, no matter what may happen.


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