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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!

Thursday, August 28, 2014


Weightless, I am. Moving without effort, soaking up it all. For I float mid air because the ground reminds of uncertainty, effortless with motivation, just movements without cause. Soak it in because for a moment I held onto prosperity, and it rests on stable ground just out of reach. 
I'm a little horse from conversation. Return my reality to anticipation. Patience tested to the max, can't turn it down. Hope is the volume I speak.

With the intense emotional news that hides in the ringing of my phone, I can't help but wonder how much less interesting my life would be if I never answered the phone.

Two days ago I received a phone call from my Doc. typically if I get a call from the doc it's because something is unusual. This call would not disappoint. I sat hopefully waiting to hear congratulations on a second zero. She informed me my viral load under 400 was undetectable, but there were other tests that require me to come in a month. Unsure what to make of this I waited. I accepted the fact that I would have a real answer in a month, since I'd have to wait until October for the new RX anyhow, it didn't bother me much. Regardless of my acceptance of the uncertainty this brings about, it still feels like I've been emotionally winded.

I was curious if she meant an antibodies test, which would surely be positive. As once you've had HCV at any time in your life you'll test positive for the antibodies. It's like any virus in that sense.

It's Thursday, today. I had a routine MRI to check the state of my liver, the regenerative nodules, and if I have cancer. I just parked the car, and my phone rings. I answer the phone and put it on speaker. It was my doc again.

Twice in a week, is generally not a good thing.

She gave me the MRI results, and thankfully no cancer! But my regenerative nodules are still doing their thing. Whatever that is. I asked her for some clarification on my blood work.
My under 400 is undetectable, however my under 15 still persisted. 

What does this mean? How is that possible? why doesn't this make sense? What is this new RX?
-it means that the results are inconclusive regarding the success of my treatment, next month's blood test will determine if I am up for another treatment. The likelihood of me doing a fifth treatment is growing at a distressing rate.

-Re-infection is the cause of most relapses, while I may have been vigilant regarding using only temporary toiletries, it could have easily happened.

-It does make sense, it's like looking at a group of a hundred people from a mile away, vs. from a hundred feet away. the closer you are the easier they are to see.

-the new RX is a Giliead's answer to Olysio: ledipasvir. it's my understanding that it is to be a once a day pill.
The last few days have also brought back a resurgence of my ascities. My feet and calves swell up stretching the skin, while the rest of me balances out the water retention giving rise to the illusion that I've gained about 25 pounds.

With all this waiting and uncertainty i close my eyes, and listen.

I've always found that music, helps me find tethers to reality.
Presently the song Wasting Time, is stuck in my head. 

So, for now I wait. I'll walk ever so slowly toward my goal.  
Solvitur Ambulando.

It can be solved by walking.

Wednesday, August 20, 2014

Finally! Yes!

This is it. I'm done with em.

My meta(four)ic movie treatment

Today is not my last day of treatment.
My blood panel last week did not include viral load, as I'd hoped, so I anxiously approach Thursday, the day of my final blood test. and Friday, the day I'll get my results.

Today, I will no longer be taking the RX for my treatment. But since the zero happened my body has begun an entirely different process.
Let's go through the film of my history with HCV to see where I am presently, shall we?

Act 1
Set up: Born, happy health baby grows up pretty normal until middle school, finds out about plot.
intro scene: C-section, birth complications but ultimately born a 10. (set stage for resiliency from complications)
Plot point 1: Doctor's visit, Hep C introduced as main antagonist.
Act 2
Mopey teen, goes through ordinary teen things with added twist of lack of motivation slowly becomes more and more positive finds motivation in relationships with friends.
Plot point 2: Begins first treatment, hope is crushed, engagement fails, low point.
Act 3.
Finds new purpose in rebuilding, fosters the relationships lost contact with. grows physically and emotionally.
Plot Point 3a: Second failure.
Doesn't lose as much steam refocuses same as previously growing more, setbacks appear but worsening symptoms dwarf setbacks.
rebuild again, better than before.
Plot point 3b. hospitalization and worst near death event yet. failure of third treatment.
Act 4.
Symptoms worsen, hope carries forward. even closer relationship with friends and family. epiphany and motivations, struggle against the final symptoms indicating am HCV liver transplant is imminent.
New doctor, new RX, new attitude the realization that I can't do this alone, and that I'm not alone.
Plot Point 4: RX combats the worsening symptoms, treatment brings the first zero.

And now we're here. in the second half of that turning point. the crucial climax approaching. I have one zero, I need two more. With my Tic Tac Toe, I'll be cured. and thus the final climax of my HCV movie life will be complete. The falling action from there, will be the MRI, the tests and the healing process over the next two to five years.  the conclusion is one of those trail off dramatic endings when a bartender asks me if I'd like a drink, and I, holding back a proud laugh, smiling say "Sure, one drink won't kill me."

What I'd like to avoid is what movies have been doing lately.
A sequel. The problem is that my likelihood for that is high, due to my increased risk of liver cancer.

So when I say today is not my last day of treatment, I mean that there is much left to do. While this chapter ends, each time I test my viral load, will determine if this movie has a happy ending, or just one of those happysad endings.

Wednesday, August 13, 2014

Right now, how many days left?


Seven, Seven pills!

"I know you're tired."

Since receiving the news about my zero, I've spent a lot of time telling people the good news.

And that it's not quite cured, but a damn good sign of it.

Celebrations, Comic-Con, and lots of Family events have been the major focus these past few weeks.

My blog has felt a little lacking lately. But in spite of having lots to do, I've had time to write.

So why didn't I? It wasn't a lack of feeling connected with the community, or sadness, the rigors of degrading health or even trying to really grasp what a zero viral load means.

It was that for the moment, I was tired of the topic. I spend much of my time explaining to people what's going on with treatment, and I appreciate them asking. But when you get the question 10-20 times a day for months...it's tiring. While the success is something I love and am incredibly excited for, explaining HCV is never pleasant. Most people close to me, know what's going on and don't ask so frequently, which I appreciate. But when I see people who know me as an acquaintance, it's usually the first question. Whether they verbalize the question or not, is a whole 'nother awkward dance. I don't mind answering, but it's like when you find out someone speaks another language. Don't say "hey speak some of that cool language." try "Can you tell me a story, about..." and give a small story prompt. It's more genuine when you're interested in the topic to have invested more than a flash of a thought. So instead of asking "how are you?" or "how is treatment going?" ask about a symptom, a side effect, something they're concerned about or ask about how they're following through on the next stages.

Now I'd like to talk about something most people generally aren't comfortable talking about, let along how HCV impacts or relates to it.


My knowledge of HCV has expanded has I've grown older, but I've always been careful as far as my partners are concerned. It's a very sensitive subject, because not only is it an intimate expression, it's also risky. In every relationship I've had I've explained the risks to them, some have felt it was too great a risk to even association with me and left. A few very hardy women have stayed the course and taken the risk. While not an STD, it is possible to spread HCV during intercourse. The bigger risks were the unseen ones. If I shave, it cuts the skin, and raises the risk of transfer. Sharing a deodorant stick, or any personal item is completely out of the question. The trouble comes with small cuts, or bruises often ignored in the heat of the moment. They can't be with HCV, it's an odd vigilance, but it's necessary. But one of the first things I hear when I mention HCV to a new person is how it relates to sex. Essentially, if you think Fifty Shades of Grey was barely even touching on the reality of rough sex, you should be cautious. Rough sex is a large risk, some of you are probably thinking to yourself... "duh." But rough sex isn't always bridging into whips and chains, sometimes it's just intense and passionate. It's always my biggest fear, transferring this virus to anyone. And if it were to someone I love, it would be devastating. With each of my relationships I disclosed as much as I knew, which in my younger days was not much in comparison. But recalling what I disclosed and to whom brings me to realize that there were pertinent facts I left out, not realizing the risk. What I realized was that while I may have explained the situation, seldom did my partner look much into it. A frightening reality I now realize. It's actually amazing what some people seem to not care about in the heat of the moment. If your partner has it, and you're reading this... chances are you're doing some research, but do more. Some people who have HCV know little or nothing about it. Knowledge is power. If you're involved with someone there is a 1/100 chance they have it. Before you get down, get tested for both STDs and HCV.

And now for the other side of sex.

What? What other side? The path up to sex. There are a lot of preconceived notions people have regarding HCV. A long time ago, while out downtown with my girlfriend and friends, we were separated and became two smaller groups. A new friend, my girlfriend and I were in one group and everyone else in the other. In talking with my new friend he inquired as to why I wasn't drinking (Never ask this question, it's rude). I responded "I can't drink. I'm the DD."

There's a pause there, it's not I can't drink because I'm the DD, it's I can't drink. I'm the DD. implying that there is another reason I can't drink. New friend may be a little tipsy but he figured it out, he's pretty inquisitive "why can't you drink?" he asks.

Rather than play out the "well I have liver cirrhosis, shit kinda sucks a bunch." I just explain to him I have HCV. and then explain the symptoms, the outlook and the transmission methods in brief. (I could give you a one minute breakdown of HCV I have said it so many times, do you see why I'm tired of talking about it sometimes? anyway...) He then, concerned, turns to me to remind me the transmission methods, but confuses them with Hep B. and then confuses it for an STD... I correct him, several times. After about seven times of this, I walk away from him and I navigate social situations to avoid conversation with him. In the end he realized what had happened, apologized and is still ashamed of it. Why I talk about it here has nothing to do with him, but rather the fact that anyone could be so confident and so wrong... only helps perpetuate the two major themes of this blog entry. Sex and the exhaustive nature of explaining HCV.

OH yea! I almost forgot about me for a minute there.

Since finding out about my zero, my symptoms have been decreasing overall. Joint stiffness and pain have become the predominant themes in the final weeks. I am very excited about the prospect of ending treatment soon. The blood draw I took today will hopefully repeat the zero I had previously.

For now I wait. Bound

Friday, August 1, 2014

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.


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.