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.

Thursday, December 31, 2009

Discovering I am Infected: Trick or Treat

I think the story of any disease starts when you discover you have the disease. It might seem to make more sense as well as being neater and better organized to start when you contracted the disease. The problem with that approach is that trying to determine when you got any of the diseases that require strong, invasive and potential destructive drugs to treat them is almost impossible. Most of us have some idea of the ways you can get infected with or invaded by difficult to treat diseases. HIV, Hepatitis, Cancer, Leukemia, Herpes, you name it; they all have vectors that we are at some level aware of. Trying to pinpoint when you got a disease is much more problematic than merely determining whether your life or lifestyle exposed you to it. All sorts of behaviors and professions can increase your chances of developing one sort or another of cancer. But try to determine just when some cells went cancerous and a tumor started to develop. And try, as well, to figure out how a proverbial “little old lady” vegetarian, non-smoking, rural dwelling individual came down with lung cancer. Likewise consider HIV, the infection vectors and behaviors are relatively well known, but trying to determine which was the time someone was exposed, or how someone else managed to avoid ever getting the disease is a fools game.

Hepatitis C is like that. The research indicates it is a blood borne disease. The two most common vectors are medical exposure (transfusions, blood products, non-sterile conditions) and intravenous drug use, but any contact with infected blood that hits a mucous membrane or gets into a cut or sore can transmit the disease. But again, just try to determine when any of that actually happened. Even if there were risky behaviors involved, exactly which time you snorted coke, injected drugs, had unprotected bloody sex was the specific time, it’s impossible to tell. Even if you believe you know the time and place, you are almost certainly wrong. Over 30 percent of the people who have HepC have no idea how they got it. They don’t fit any of the known vectors, haven’t had a transfusion, have no experience with scenes of blood and mayhem, they have not the faintest idea how it happened to them.

Neither do I.
I have done my share of drugs, was an active participant (if somewhat of a late-comer) in the sexual revolution of the seventies, have been involved in all sorts of activities that involved one person or another getting injured, cut, bruised and bloodied and any of these thousands of incidents (mostly the injuries and such, I am not in Wilt Chamberlain's class of sexual activity and never had enough money to do vast quantities of drugs) could have been the one that infected me, there is no way to tell.

The other tricky part is that the disease is pretty much a stealth virus. When you get infected, there is a window period of 2-26 weeks. During the first 2-12 weeks of this period you usually have an acute attack, which may behave like a bout of the flu. Your body either beats the virus and you go on with you life never knowing you were exposed, or the virus wins. If it does (and about 80% of people don’t clear the virus from their bodies) it quiets down and becomes a long-term chronic infection. But even then, it can be present in your body, with a quiet war going on between it and your immune system, for 10 years, 15 years, 20 years or even longer before you ever display any symptoms. Some people go through life without the disease progressing, never showing any symptoms and leading relatively normal lives. So once again, trying to remember all the flu-like attacks you have had over the last 20-40 years to try to spot the time frame in which you might have been infected is another form of fools game. Suffice it to say, you probably will never know when and you will never know exactly how you got infected.

But you will remember the day you found out you had it.

For me, it was Halloween of 2008 at about 1:15 p.m.
I had just returned to my office (my “office” being a corner of the backroom of a bookstore) from the biweekly staff meeting of the nonprofit organization I work for (for all the English teachers and grammar purists out there, I know the correct usage is: “for which I work,” enough already…). Only one person, the enthusiastic young fundraising assistant who was newest on the staff, had bothered to attempt any sort of a costume and I was feeling the usual relief at having done with the staff meeting ordeal. As an aside, I was 48 years old before I ever attended a staff meeting. I had always run my own business or been employed in very small businesses or been associated with the building trades. The first time I went to a staff meeting, I couldn’t believe what was happening. Suddenly Dilbert made sense to me.
When I checked my phone there were 3 messages to call my doctor’s office.

I was mystified. I had been in to see him earlier in the week about high blood pressure and to get a scrip for a low-impact muscle relaxant to manage my creaky back. He had sent me down to the lab for some blood work relating to the blood pressure problem and some other “routine” tests so I had no idea what might be urgent to him. After all, my doctor is not the sort of guy to call me about anything. There have been times when I have had to call his office multiple times just to get a call back about the results of things like stress echocardiograms and CAT scans, much less routine blood results. I called his office, left a message and he called me back – himself - within 15 minutes.

I don’t remember the actual conversation word-for-word but it went something like this: “HR, this is Doctor K. You have Hepatitis C. We should set up a follow-up. I can refer you to a gastroenterologist and tell you about the treatment. I’ll transfer you to my nurse to set up an appointment, Goodbye.” Not one for chit-chat or bedside manner, Doctor K. Though, for that matter, I couldn’t really think of what to ask. I was aware of Hep C in the way you are aware of sickle cell anemia or shingles or tuberculosis. It was something other people got, it was maybe or probably serious, it affected some major organ in your body and probably wasn’t immediately life-threatening, or not.

Thank God for the Internet.
As I was sitting in front of my computer, I immediately googled Hep C. Thank God as well for the folks at the Mayo Clinic, and Centers for Disease Control. There were lots of sites from places with good reputations and reliable information all with reams of stuff about Hep C. While I wanted to know about the disease itself, the first thing I wanted to find out was what the effects were and what were the changes in behavior I had to do the fight the disease. And I found out…No more drinking. Damn, no more beer, no more wine with dinner, no more champagne at New Years, that was the single thing I remember most about all my initial research.
That and the fact that I might have infected my wife as well.

I don’t remember much of the rest of the day. I must have done my work, talked with customers, rode the bike home, but I don’t know how. I knew I had to talk to my wife about it, but I couldn’t do it that day as Halloween is her favorite holiday of the year and I wasn’t going to ruin that for her.

So that was my Halloween. I had gotten a first class trick but there was no treat at all.