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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!

Wednesday, July 16, 2014

Shut up, shut up, this is my favorite part of the movie!

By the numbers.

It was 2:46PM, July 15th, 2014.

I was sitting on my couch in my apartment talking with a friend. The phone had been ringing constantly, calls from friends back in town mostly. This call came from a number I didn't recognize, It was 2:46PM, July 15th, 2014. Our conversation had been interrupted a handful of times, I normally would have let the call go to voicemail. But Something was different. I told my friend that I needed to take this call, that it was probably the doc. I hadn't scheduled my next MRI and they'd been calling with some frequency to get it done, so it wouldn't have been out of the ordinary.

It was my nurse, she called to tell me the results of the latest blood panel. They'd been making sure my vittles were on the level, since I somehow managed to keep forgetting to take my magnesium. Since my last blood draw was a few days ago, I was hopeful this would be a call I'd been waiting for. She began, "The results are in from your last blood test, and your magnesium levels are low" a low sigh conveyed my plight of perpetual hold she continued to remind me about how I needed to watch them, and then she said something I'd been waiting fifteen years to hear.

"... your viral load is undetectable."

I was beyond elated, my ears perked up, in disbelief I asked her to repeat what she'd said.
With a look of near shock, we ended the call, and I informed my friend of the news. And for the next ten hours I would tell more friends and family. My mom lost it, in tears, it was hard to get out of her hugs. My dad, as my friend put it, "genuinely smiled and was happy." Which for reference, my friends never see my dad smile, except at his own jokes.  Each person I  told I saw their face light up bright, high fives, fist bumps, hugs. I reminded each of them of what this means.

In all of my treatments, I've never been able to reach this point. This point had always been just out of my grasp. What being undetectable, or Zeroing out, means in terms of viral load is that I no longer have the virus active in my system.

It does not mean I'm cured...yet. What it means is that there is like a 97% chance I'll zero at the end of treatment in five weeks, and like a 96% chance I'll stay zero by SVR12 (SVR12 is 12 weeks post treatment). At that point it's like a .0004% chance of remission. So while it doesn't mean I'm cured, exactly, it's damn close to it.

To celebrate freedom, and being out of the danger zone, we're going to Kansas City BBQ, and watching Top Gun.
Because we're too close for missiles, so I'm switchin' to guns.

Friday, July 11, 2014

Raising the bar on your expectations.

See that x/100 goal? that's because HCV outreach goes nowhere. even though MILLIONS suffer from it, There's a stigma.

So here i flow,it's poetry slam time.

Most people are afraid of the reception, not just the kind of connection.
Drop the cellphone for a minute we're talking about how you receive this packet of information.
Laced with connotations of drug use.
We've got all lines busy here trying to reach out to you, trying to scream to the world.


and stopping this son of a bitch in its tracks, get the right drugs involved. Cure rates so high you'll swear you've smoked something.
But...It's a game of telephone isn't it?
Tell a friend.
Educate. Everyone
Eliminate. The stigma
Emancipate. Those burdened with hepatitis.
So let's gets some 4G LTE connection from this tower. Spread the word faster than the virus can.

These bars of a fear are a jail cell, turn the bars to signal.. 


Am i raising the bar? No, Raze the bar. Drop the bad habits: alcoholism feeds hepatitis, cirrhosis, liver cancer. How can you be a liver without a liver?  Did you have your phone on silent?

That's what they call this, Hepatitis... the silent killer. Turn your ringer up, we're laying fiber before fibrosis. Google that, upgrade this connection, i'm twitterpated with the cure.  So lets get social with this network, if we all give this grid a lil shock... Then we're gonna leave a thunderclap.

Heh, Joke's in the end.

Oy! has it been a while since I've written a blog entry, well as you'd expect I've been a bit busy up until today. Independence day was festive and fun, I managed to spend some time "in the sun" albeit it was wearing a heavy coat of sunscreen under an umbrella and fairly covered up most of the time, but still!
I must say, exhaustion is still the biggest issue I deal with as a side effect of this treatment.
I came upon an old favorite, one I suspect came out of a very long day for me. A few hours in sun/shade and a going on 14 hours, I was more than exhausted. I began to get emotional over small things, it became overwhelming even really talking with people. I'd felt social anxiety issues from treatments past, but I didn't expect this. I suspect it had to do with pushing myself, but it was hard to hold back tears as I sat in semi-isolation.
Luckily for me, I've gone through worse. I learned to put on a mask when I was in treatment and working with kids. I couldn't let them see the worthless rage, the irreverent despair and the dashes of utter panic. So that night I swallowed my sadness for the time being, and kept on.
I've been trying to do more of a regular daily schedule, so far it's been rough. I've lost a lot of motivation, for seemingly no reason. I suspect my encephalopathy is beginning to return. My ascites are slow to return, but still here, so back on my balanced meds I go.  I am writing this, not having taking those meds in about two weeks now. So if my sentence structure seems more disjointed, it's no surprise why.
In exciting news, I've been featured on Hepmag, and I've got a few blog entries up, also mystory should be up soon! So if you'd like some more back-story to my history of having HCV, it's a decent bit of reading.

Last night put me at the 6 week point! I'M HALFWAY THERE!!!! Bon Jovi understands.

I also took my blood test yesterday. When you've had your blood drawn as often as i have you know the drill, luckily I'm the easiest stick any lab tech or  nurse could ask for. So long as I'm decently hydrated, my veins are visible from six feet away. 

So when I get a shitting stick, it pisses me off a little. ESPECIALLY when the prick (hehe) happens to stick the needle in, THEN MOVED, HE FUCKING MOVED THE NEEDLE. WHY, WHY, WHY? The trouble is, having done this literally a hundred times before I know a bad entry. He knew what he was doing, not sure why he had to be an asshole.  They'll be giving me my viral load on this test, I may know as early as this evening!
Punctual as always, the last few days have seen a resurgence of pain in my sides. at one point in time it almost felt like it was in my appendix. At least the pain wasn't in my index, a broken finger makes everything hurt when you touch it. My colon on the other hand hasn't been seeing the levels of distress it's been used to, it's odd to have blood in that region when you don't have a period.

Hopefully, this life sentence of HepC will see a break yet.