Wednesday, October 29, 2008

A Little Bit of History

Roll back to just before the Christmas holidays in 2006 ... I was to host a family Christmas gathering which would bring nearly 150 people through my home for dinner, gifts and dessert. I was so tired but still I kept working feverishly to get the house in order, do a lot of the cooking and make sure everyone who was coming would have something in the way of a gift to open.

Exactly three days before the date of the big family party, I woke up with a fever of 104 and was quite ill, coughing, sneezing and generally sore all over. Since I knew I had to be well for the party, I went straight to the doctor. My normal doctor had taken the week of the holidays off for his vacation so I agreed to see the new doctor in the practise and how glad I am now that this appointment was made!

Dr. Moon asked me about the normal stuff and took blood. The day of the party, he called me and informed me that my blood chemistry showed a very, very low thyroid and very high liver enzymes. He asked me to return to give him more blood. I did so and on the Wednesday between Christmas and New Year's Day, he called me to inform me that I tested positive for "HCV antibodies". I will never, ever forget my response to hearing this ... "Oh my God!", I said, "What exactly ~is~ HCV?"

My education into Hepatitis C began on the Internet, reading everything I could about the virus and how it affects the body. The more I read the more despondant I became. I read about how it slowly kills the liver over time and that it is the leading cause of liver cancer/transplant in the United States. I learned that there is no cure, only a hideous treatment which may, or may not as the case may more accurately be, slow the progression of the virus in order to give the liver a chance to regenerate and become more healthy. And I grieved for the loss of life the way I had come to know it ... everything was about to change and not so much for the better for me and for my husband, who somehow miraculously tested negative for the virus.

In the Spring of 2007, I began what they affectionately refer to as "combo-therapy", which is a treatment much like chemotherapy and lasts for 48 weeks. I took 6 very large pink pills called Ribavirin every morning and night and once a week, my husband administered a sub-cutaneous injection of peglated interferon into my stomach area or upper thigh. Instantly, I began feeling the side effects; extremely high fevers, joint pain the likes of which I never experienced before and oh my God, the nausea!! My sister-in-law Lisa told her mother of my issues with keeping food down and bless her heart, Anne (Lisa's mother) baked me a home-made pound cake ... it was the only thing I kept down for weeks. I lost nearly 50 pounds and most of my hair. Then, about two months into the treatment, my blood platelet levels dropped dangerously and I started to bleed. I bled from every orafice in my body, including my eyes. I literally cried tears of blood. And I kept bleeding until I thought I was going to bleed out. They gave me blood-building drugs, they hospitalized me for IV fluids, they wanted to give me a transfusion, but I resisted. So they had to reduce my dose of therapy and 8 weeks before treatment was over, I learned that my virus had returned with a vengance. I completed the treatment anyway and knew that in six months, I would have to do it all over again.

Fast forward to today, when I learned that I have been accepted into a new clinical trial for treatment of HCV with PegIntron, Ribavirin and something called Boceprevir. I am to start the screening process for this new therapy sometime in mid-September with the hopes of beginning treatment in early October. The hope for me on this new treatment and new drugs is to achieve a sustained virologic response (an "acceptably low" amount of virus in my blood) and remission once I am finished. It is another 48 weeks long and the side effects will be similar to the first round of treatment, but I am looking forward to it. Even though I know I will feel awful, it will be a different kind of awful than I feel now if that makes any sense at all.

So, for now, we wait and see.

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