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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Sunday, July 26, 2015

Jaundice, HCV, and Me.

I haven't spent much time on here talking about myself lately. I've been wrapped up looking for more information regarding insurance, and trying to analyze the political climate and new concerns about HCV.

So I'll be posting or presenting a handful of potentially peculiar posts until my next doctor's appointment in August. Because It's time I get you up to speed. On moments, with friends, because they're important. Because they help me better understand how I approach this physical and emotional battering ram, with small and subtle gestures.
This past weekend, we had installed a new bulb in the kitchen. It's a bright white bulb, the light had been malfunctioning for a while. Since most of the bulbs in the rooms are soft white and shades of yellow, things appear their actual color.

Most of our lights are soft white or yellow intentionally.
My bilirubin has been bizarrely high since I graduated high school. I've always had a shade of yellow to my skin and dull eye whites. I've learned to obscure it with color, lighting and getting a little tan.

My brief experience with extreme jaundice confirmed what I assumed would be the case.
Call me.. Golden-eye.
I stick out. Especially as the jaundice also extends to the whites of my eyes. Normally now my eyes have a hazy yellow instead of a typical white sheen. When the jaundice is bad, it's jarring.

When they see it most people can tell I'm probably sick, but it's hard to understand. As it's the only characteristic they see and besides that, I appear healthy.

I was in the kitchen when a friend of mine noticed my jaundice from a few feet away. Concerned, he asked me about it. It's something I can't see without a mirror. It's something I can't tell because I see things with a slightly yellow wash. A camera is best, a selfie under a white light with my eyes wide open will tell me how jaundice my eyes are. I can compare it to something I know to be white.

Fear, anxiety rushed into me within a second. I'd have to go back to the hospital. I'd be there for a while, and this could happen at any moment.

It was a sobering realization, that any day, I could wake up look in the mirror and say "Shit. Where the hell are my Go-Bag, Keys and Wallet?"

As much sadness as it brings me, as much fear as it brings me, dwelling on hang ups slows down my response. A response that's crucial and could involve whether I live to make it to the hospital or freeze up and delay timely medical assistance.

For a moment I stuttered, I realized I'd forgotten to take my meds that day. I downed them quickly and I took the photos under two different white lights, compared them to white objects. I was normal, well for me anyway. It was simply the case that my friend had never seen the more pale part of my farmer's tan  under the bright white light.

I'm rather relieved that this was the case. But I realize that it is very likely that I will become more and more jaundice as I approach the need for a transplant.

But I guess it's good to know that at least I'd have survived The Battle of Bunker Hill. So I got that going for me, which is nice.

The Battle of Bunker hill is where the phrase "Don't shoot until you see the whites of their eyes." came from.

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