Grand Mal Headache

I missed posting yesterday because I woke up with a righteous headache and it stuck around allllllll day making me miserable. Now, I know headaches are one of the main side effects of the Mavyret, but even I am not willing to blame it on the ONE dose I’d ingested at that point. So like Milli Vanilli, I was blaming it on the rain. (Turns out my uterus also had a lot to do with it. If that’s TMI for you, get outta here. We’re all grown.)

Luckily, I got up today and all was right with the world. Since I don’t have anything medication-related to report, I figured I’d take a quick five to talk about how I came to find myself with Hepatitis C in the first place.

Four score and seven years ago, back in 1991, I was a chubby young thirteen year old nerd enjoying the summer before my 8th grade year. We started noticing that I was huffing and puffing more than usual from physical exertion, I was paler than normal (like Twilight level but without the glitter), and that I had some weird looking rashes. We didn’t think much of it at first, other than that I needed to get off the couch and get outside more.

We went to the state fair in the Fall and I remember as we pulled into the parking lot, my leg itched and I was scratching it through my jeans, but couldn’t quite get the itch to stop. We stopped at the bathrooms on our way in and I was grateful for the chance to get at the itch unimpeded. When I got in the stall, no more than 5-10 minutes from getting out of the car, my leg had four ugly crimson striped bruises where I’d just scratched it in the car. I was so startled by it, I had my mom come into my stall to look at it. She told me to stop scratching so hard, and we brushed it off and went on about our day.

Then we noticed the “rash” around my ankles where the elastic on my socks would be, or if I had a pair of tight pants on, the rash would show up around my waist as well. We thought it was heat rash, until I went in for a hair appointment. When my mom picked me up from the salon, the back of my neck where I’d laid at the shampoo basin was dark purple with bruising. We made a doctor’s appointment as soon as we got home. I remember driving home, asking her if I was dying. She scoffed and told me of course not. How could we possibly have known?

I’ll tell the story of how I came to be diagnosed with Aplastic Anemia another time, but all of the bruising was the result of a rare blood disorder where the bone marrow stops producing platelets, which is what causes your blood to clot. I had numerous red blood cell and platelet transfusions during the months we waited for a diagnosis and when I was hospitalized for treatment. In 1991, the medical community didn’t know that there was such a thing as Hepatitis C yet, so blood transfusions weren’t tested for the virus before they were administered to patients like me.

Because I was being treated for a blood disorder, we knew almost immediately that something was wrong with my blood. Back then, they called it “non-A non-B hepatitis” until enough of us had it (and until type D popped up) that they finally named the puppy.

Treatment for Hepatitis C back then was unsophisticated and a lot of the time caused more harm than good, so I waited. Then I saw more specialists, and they said I wasn’t that sick, so I waited some more. Then I saw more specialists and there weren’t really many good choices for my specific genotype, which only 9% of Americans with Hep C have, so I kept waiting.

I basically waited myself right into cirrhosis, but I believe all things happen for a reason and in His time, and at some point, I’ll also tell you the stories of all the ways the pieces fell into place perfectly for me to start treatment at this point in life with this team of practitioners. It’s a mind bender y’all.

Until then, I’ll be over here watching The Dead Files and having some Chef Boyardee.

– Tessa’s Bum Liver