I am a 57-year-old white American male infected with Hepatitis C. I am involved in a controlled medical research study by Roche Pharmaceuticals of an experimental Polymerase Inhibitor (RO5024048 also known as RG7128) drug therapy for the virus. This document is the story of my illness and the experience of treatment. My lovely and pretty damn wonderful wife will be contributing her take on the experience as well.

Saturday, September 4, 2010

A Nice Soft Belly

It turns out that my status as a research study participant who morphed into a standard of care hepatology patient created a bit of a black hole in my medical records. Since all of my records from the study are confidential the hepatology department discovered that even though I was 12 weeks into treatment, they did not have basic paperwork on me. To solve this problem, they brought me in for a meeting with another nurse practitioner, TL, to gather the necessary data. Unfortunately, they did not tell me why I was meeting with her and thus I left my medical history documents at home.

When I arrived, they handed me a twelve page questionnaire detailing my medical history, most of which I can never remember in normal circumstances much less when my brain is in a fog. It worked out well enough in the end as TL and I went through it together and puzzled out the details. It was reassuring as well that when I recounted the timeline of my study participation, dose reductions and subsequent viral breakthrough, TL was firmly convinced that the dose reductions were indeed the cause of the breakthrough. It is powerful reinforcement to hear another experienced person express the opinion that it was not the intractability of the virus that caused the problem, but rather the variability in dosage dictated by the study protocols. It reinforces my optimism going forward through the rest of the treatment.

TL informed me that the rest of the treatment would total nine additional months after I became undetectable. Given the nine months I have been on meds, it will make a total of 18 months of interferon, ribavirin and the other assorted drugs I am taking. It is going to be an even longer grind than I assumed at the beginning of the process lo those many months ago.

My viral load is down to 110 IU/ml. after twelve weeks and I am hoping to see it go undetectable (under 47 IU/ml.) in my next test on the 10th of September. That would put the end of my treatment in June of 2011 when I turn 58. If it works and I am still undetectable six months after the end of treatment, I will have gone from diagnosed to cleared of the virus in three years. A dream perhaps, but it’s the one I am sticking with.

The meeting ended up with TL adding some additional monthly blood draws to my schedule and a brief physical exam. TL checked my legs for swelling, listened to my lungs, checked for any rashes and then palpated my stomach to check for ascites. “Oh, you have a nice soft belly,” commented TL, “no evidence of fluids at all.”

That is the best medical comment I may have ever received. From this point forward, anyone who comments on what is left of my spare tire is going to be told that my medical team has complimented me on my soft belly and far be it for anyone else to criticize its texture. In fact, I am patting it now as I finish this missive, so soft…

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