On March 7, 2008 I got sick. It was a Friday. Because it was the weekend it would be five more days before I found out what was wrong with me.
Looking back in retrospect I suppose certain things might have been avoided, but the overall effect wouldn't have changed anything. My stomach aches would have continued to happen along with the excruciating pain that led up to them. And no matter what I would have still ended up in the hospital. As it turned out I was able to walk in there by myself. But if it had been one more day – If it had been one more night -- I suppose I would have probably arrived there on a gurney.
Before I can go forward I have to go back. It was early spring in 1997. That's when it started. My wife and I were newly married for almost a year. Our first child was just weeks old. Like most responsible parents, one of the first things we did was to start looking for insurance. Obtaining a policy was not a problem; companies were eager to sign us on. When we found someone that we were happy with, we set up an appointment for a meet and greet. Later came the drawing of blood. About a week or so after that came the call. It was a message on the phone: “There is a problem with your husband’s policy.”
We did not know it then, and it would be many years still before we understood the full implications of that phone call. For eleven years we went about our lives fighting a ghost from my past, a ghost that will haunt me for the rest of my life.
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It is 1969. In the Arizona desert I was riding my bicycle along an asphalt road. My sister was balanced on the backseat of my bike and her feet dangled and caught strength on just the small nuts and bolts that held the tire to the frame. As I pedaled I could hear a car coming up from behind us. The sound of it made me nervous. We had just come around a corner on a winding road and now we were going downhill. In a minute the car would come over the hill and it would see us. The three of us – me, my sister and the car – would all meet as I coasted down the road into another turn. Hugging the shoulder of the road I could tell that it was going to be close. I turned around once to see where the vehicle was at. I don’t know what happened after that. I might have panicked or I might have saved our lives. I know that my bicycle wheels took hold of the loose dirt and I lost control. My sister and I bounced through the desert for just a short distance until we came to an abrupt stop. The car drove on.
I don’t know if I would have called it an accident even though I ended up in the hospital. When the bike stopped it was because we had hit a mesquite tree. The handle bars jerked sideways and I caught one end in the abdomen; just as my sister plunged into my back. It was enough force to cause internal bleeding. I didn't realize what had happened on that morning, and we would not find out for almost three more days. By then I was close to death.
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In 1997 I would call and ask about my policy. I did not understand the information I was hearing.
“You have Hepatitis C,” The insurance provider said, “We can’t write out this policy for the amount you are looking for. We can write you a policy, but we just can’t give you this policy.”
“What the hell is Hepatitis C?” I asked my wife.
“It’s a blood thing,” she said, “I don’t think it’s very good.”
We went and saw my family practitioner next. He explained the Hep C. virus to me in the simplest of terms and then sent me to another doctor. That doctor was a gastroenterologist. For the next couple of years we would monitor the virus and see little change. It was almost two years later when we did a liver biopsy and found minimal scarring on the liver, a year after that we started treatment with Interferon injections and an oral regimen of Ribavirin, hoping to cure it. After 6 months the map showed the virus had diminished. But then it came back. Perhaps it was because I was diagnosed with genotype 1 instead of one of the other five. Genotype 1 is the most resistant to Interferon/Ribavirin treatments. It is also believed that up to 70% of North Americans who have Hep-C have genotype 1. After a year of doing the Interferon drug treatment we went back to monitoring my blood count. My platelets remained elevated, as did my Bilirubin. For years nothing changed and then things began to happen.
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In 1969 I almost died from internal injuries. I was told that I had 3 or 4 pints of blood that had leaked into my abdomen and I had more than 20 blood transfusions. I was in the hospital for weeks and I spent almost half a year on a liquid diet. I had two setbacks that later put me back into the hospital. On March 12, 2008 – because of that injury -- I was back in the hospital. It took me 39 years to go full circle. When I woke up in that hospital bed on that Wednesday morning I asked the nurse standing by my bed what was wrong with me. She looked down at me and in a voice of hostility she said, “You have Varices.” And then she walked away.
It had been 39 years since that accident... and a ghost had followed me home.
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I just came over from Lorrie at Muds site and I am humbled by your story. I, too, live with a chronic illness and although mine does not seem to be life-threatening at this time, it is certainly life-altering.
ReplyDeleteI will keep you in my thoughts and prayers as you embark on this difficult journey. Thank you for sharing your story. I do hope that you will continue to write. It is important for people to understand how crucial organ donation truly is.
hugs,
Debbie
I, too, am humbled. It takes a brace soul to share such a personal story, braver still that you have stood up to it and stared it down. Fight the good fight.
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