It's a Treat meant for me.

Just the other week i hit the halfway point. It's a milestone for a number of reasons. The first being that i've never made it to a halfway marker. Previous treatments have had either no or ill effect and provoked me into dropping out early.

The second being the ease

Comparatively this treatment is the easiest and smoothest one yet. While i wait to find the efficacy my best hopes are pinned on this never-before-seen RX production in HCV care. They're coming out with a new RX in October, it's another one of Gilead's Manhattan projects.

But what does being cured mean? How has having a  zero viral load physically affected me?

Psychologically  it's a huge deal, but let's get down to the day to day bullshits. The cirrhosis in my liver is the virus' gift to me for the remainder of my life. The scarring will never truly fade. My hopes are for the remainder of my liver to recover to a state where i no longer require transplant.

This would require the chunk of a liver i have that isn't necrotized, to heal. Healing this much of my liver creates room for a new problem.

Cancer.

If you don't know how cancer works, or have some confusion on the matter think of like growth. Whenever regrowth happens there is risk for cancer (there are lots of other sources, but this is a big one), when the cells reform sometimes they're not perfect. Nature miracl...fuck-ups, really. A cell has this cool map of how to replicate, but sometimes it's like "nahhh fuck directions i got this." And then it just runs around replicating even stupider variants until some other cells notice and go "Dude, it's called RNA, use it." Of course the dumb cell in response is gonna be like "Nah man, the man tracks me with that shit, NO PAPER TRAILS, WOOOOO." And then the other cells eat him, in a sense. Well, it just gets ripped apart for material. Either way, this regrowth my liver will be doing is on a massive scale, so there is lots of room for error. I have a very large number of something called Regenerative Nodules. These are one of my largest risk factors.

So, two years down the line I've avoided much of my risk to cancer, what's happening with me?

No one knows.

No, seriously.

HCV is creating this weird situation about an organ we know little about.

My mom is actually part of the study of how an HCV liver regenerates post treatment.

I , too will be part of the study for regeneration.

But these are the things we know:

-My liver will take years to fully recover

-I will never have a fully functioning liver as other people do.

-Even with all of this done, i may still need transplant later in life.

-My liver will function at its best within between a year or two.

-No one is sure how my body will treat the virally damaged cirrhotic tissue.

-My jaundice, ascities, encephalopathy and everything but breath restrictions will slowly return to a "normal" level.

-I will forever be short of breath, the respiratory damage is presumed permanent, thus keeping fatigue a major factor in my life.

That being said, this treatment is fantastic, not only because it's put me on track to be cured but because of what it's doing for my liver function.

In the past it was like i was going to Golden State Gas in Poway, ya know... 20 cents cheaper since it was 10% water. Now i'm going to a real gas station and getting the fuel i need, the damage has still be done, but the car runs a lot smoother.

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.

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.

IT DOESN'T MATTER HOW I GOT IT.

IT DOESN'T MATTER WHAT I'VE DONE.

WHAT MATTERS is life.

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.. 

CAN YOU HEAR ME NOW?

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.

Join, so the only clap left is a standing ovation for those who are last cured.

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.  

The better purple team.

When going through my paperwork i noticed a form for the q80k Polymorphism, it's a mutation that limits the treatment choices you can do. It messes with the efficacy of Olysio, by knocking it down 20%.

Quickly reading this before heading out for the day was not a wise choice, because if i've learned anything from this virus, it's check, double check, and then check it again! After freaking out for a few hours while my ascities began to return i was having a hard time focusing on doing much of anything else today.

I got home and hit more websites, reading dozens of abstracts and articles looking for anything... and then i found it.

There is an exception. When Olysio is taken exclusively with Sovaldi, it does not change the efficacy.

A sigh of relief, to say the least, as i wait for my  results from the 4 week blood test.
To more good news! I'll be doing some blogging for Hepmag.com, so check it out! it's a great resource to learn a lot about Hepatitis ANNNND it has a really active forum!

The liver life walk went fantastic. we had over twenty people come and raised over $500.00!!!!

THANK ALL OF YOU SO MUCH FOR YOUR LOVE AND SUPPORT, TEAM WHY NOT ZOIDBERG KEEPS ON GROWING!!!! TWO YEARS IN A ROW. NEXT YEAR LET'S BE EVEN MORE AWESOME!

Good News Everyone!

I'm incredibly exited today as I'm on WEEK FOUR OF TREATMENT. A lot has happened in the last week, but two liver specialists in one week will tend to do that.

Let's start at the beginning of the week. Early in the week I met with my transplant doc, she had the results from the bloodwork I'd done on Friday as well as the past few weeks to show how I've progressed.

ALP is down

ALT is down

Bilirubin is down

But what does that mean? Besides that boy needs therapy? It means that my liver function is returning to a state of normalcy. Something I haven't known for years. It means my brain is operating better, my organs are less burdened by the wretched fuel my liver had bestowed upon them in earlier times. And most importantly it means that the treatment is working. 

I'd post the numbers, but I'll save that for a more technical post, I'll even make some charts for your inner data nerd.

One number which is a serious indicative factor of the progression rate of the virus is the viral load. A number I have yet to receive, but will know of it soon.

In the last few days the state of my liver's functionality has allowed me to stop (or at least pause) taking my diuretics and lactulouse. My body is holding on to vittles more proper like. I can engage others in conversation on a scale I'd nearly forgotten that I had the capacity for. In a weird way I liken the difference to Charlie's transformation in Flowers for Algernon.

While my body is functioning on better fuel it doesn't mean that the liver damage is healed, it means that the process is no longer as inhibited. it means the treatment is working well. My symptoms are all very present, and remind me when I get too sure of myself, that they are still a force to be reckoned with and not to be taken lightly. The side effects however have lessened to some degree, my photosensitivity is slowly becoming more bearable and the headaches and side pains more predictable. 

Diet has also played along well with this. I've been avoiding high salt foods, with the help of a friend I even found a no salt bread at Sprouts. It tastes a little rougher but it's not that noticeable. My exercise routine has been irregular, but still it's as intense as I can make it.

I learned two pieces of information on Tuesday from the transplant doc that were rather puzzling. The first was that my treatment was 12 weeks, not 24 as I had originally thought. 

The reason for this is a little complicated: 

For a decomp  Cirrhotic patient, such as myself the efficacy or likelihood of success on the 12 week program is about 86%. for a comp non-cirrhotic patient the efficacy is about 94%. At 24 weeks both patients, cirrhotic and not see about a 94% efficacy rate. Since I'm ordering off label(not using one of the FDA approved combos) my insurance only covers so much of it. The docs tell me I'm on the 12 week slot. Here's why this is better while it initially may seem to suggest otherwise.  There is a new partner drug to come out in October which will be the FDA approved partner to Sovaldi, both drugs will be manufactured by Gilead. So if I were to fail this treatment another will be more quickly available to me while on the 12 week treatment as compared to the 24. 

hmmm...that's a little complicated... here's the TL;DR of it 12 weeks is better because if I were to fail then a new treatment is more readily available and with higher efficacy AND FDA approval sooner than if I were to take 24 weeks. 

Transplant doc also told me a seemingly odd piece of information. That drinking two cups of coffee per day is good for the liver. 

Okay, I should mention right now: I hate coffee. I hate the smell of coffee, I hate everything about coffee. 

but since learning this I've been using my French press to down two cups a day. where I begrudgingly sweeten it with Hazelnut syrup, almond milk and agave nectar.

Could I make that sound more hipster? Oh I guess if it were Turkish coffee. (that's next week, as I'm trying lots of blends to find one that is the least repulsive. Go Big or Go Home, amirite?)

My meeting with my GI this last Thursday was equally as fruitful, not only did we confirm the 12 week situation (I had mistakenly thought it was 24 week due to multiple conversations on the topic leading to both conclusions) but that I'm responding very well to the treatment.  I did learn of something still troubling however. My platelet and hemoglobin counts are lower than they should be. I'm borderline anemic, which helps explains why I'm more tired often. 

Overall this treatment is doing amazingly well, not only is it more bearable, it's working. 

but I've been here before, the triple therapy worked, at least initially. I shot down from a 9 million viral load to around 200, while incivek ravaged my body it did assist my progression against the virus. I hold onto hope and I believe this will work, but I understand and humble myself to the potential reality of failure.

This, is how I've remained resilient, while all of this good news is fantastic and if it holds, exactly what I want... I must constantly prepare myself for either situation, so that I may be ready for my next trial if need be. But in the mean time, this spoonful of sugar helps the... Coffee go down.

ALSO TOMORROW, SATURDAY IS THE LIVER LIFE WALK!

Linked

The Liver life walk is coming up! Please join or donate!
We've got an awesome team but a few more heads couldn't hurt!
You can also show support by picking up a shirt!
Or feed your inner slacktavist and change your profile picture (inspired by zoidberg)

The walk is this Saturday, we'll be gathering at around 8am.