Wednesday, April 28, 2010

Let's Get Started

May 1973 It seems most likely that I contracted HCV (Hepatitis C Virus) from a blood transfusion after a major car accident. I had no inkling of anything until the late 1980's, when usual blood work kept coming back with elevated liver functions. I questioned those, and new testing evolved which led to the identification of HCV about 1992. I was feeling fine, leading a very busy life, and I just put the whole thing on the back burner.
My doctors kept pointing out to me that eventually I would have to deal with it, but I chose to ignore it for a few more years. There was never a good time for me to be "sick"or out of commission. I finally had my first liver biopsy in 2001, which showed minimal involvement; stage 1, grade 1. I was advised to keep an eye on it, and to be gentle on my liver.
October 2007 My gallbladder flared up and I ended up in the hospital for almost a week, where I had a full work-up for anything and everything. Turned out I had Graves Disease, (hypothyroidism), along with gall stones. Had that surgery in January of 2008, and a second liver biopsy while they were "in" there. That biopsy showed significant change: grade 2, stage 3. And I was 57 1/2, still a prime age to treat.
September 2008 I began treatment with a combination of Pegasys ( pegalated interferon) and Ribivirin. It knocked me for a loop, with lots of side effects, but I did manage to continue working. Teaching preschoolers all day is demanding; not many chances to stop and catch your breath or take it easy. So even though I thought I had had a rough time, in retrospect, I guess I still plugged along. I was termed a "rapid responder" The virus was not detectable withing the first month of treatment!
March 13, 2009 ended 24 weeks tx (treatments) and I celebrated. But within 6 weeks I noticed some symptoms coming back. I had some pain in my right mid back, was short of breath, and really fatigued again. For some strange reason, I wasn't surprised when the call came in June that the virus had returned.
November 2009 I sought a second opinion on treatment from a specialist in Philadelphia. I was hoping I could squeeze in to a clinical study, but they were already under way. He recommended I try treatment again, for a longer duration this time, with basically the same drugs. NO hurry, other than I wasn't getting any younger and my liver was probably undergoing more rapid demise, due to the gen 3 type.
January 2010, after the holidays, I seriously began the road to re-treatment. I will cover my thoughts,reasoning, etc. in a separate entry. My youngest daughter actually made perfect sense when she said "Mom, even if it doesn't work, and even if you do get sicker on down the road, you will know in your heart of hearts that you did everything you could to get rid of it". Despite high quality health insurance and living in an urban setting with wonderful health resources, I juggled phone calls, contradicting information, postponed arrangements, etc. etc. etc. I couldn't begin this journey with any doubts, non-answered questions, or hesitation in my resolution to try it again. It's been a bumpy road, but finally the 2nd round of my journey is about to begin.
April 29, 2010 The medications were delivered today, and tomorrow evening is the first shot and pill. I've been ready to start for about 5 weeks, so this is almost anti-climatic. I'm at peace with my decision to give it another shot (pardon the pun) and realize that although it will be hard, I am feeling relatively good, have some energy, and not getting any younger.
I had blood drawn this morning for a baseline comparison. Took 3 attempts to get all 7 vials that they needed! I will try not to bore you with too many numbers, but will post some of them to use as a reference point along the way. I also will share with you some of the research and resources that I have found most helpful. I truly hope that this blog will help someone else who is dealing with the same situation, as well as serving as point of reference for my friends and family who care about me and hate to call or "bother" me.
Here we go!! I see sunshine and peace at the end of this long road.

Tuesday, April 20, 2010

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