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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, May 28, 2015

Knock down five stand up six.

Some introspection I've come into whilst failing treatments.

When it comes to goals, I see a lot of inspirational quotes and lots of motivational goal oriented articles, blogs, ad nasuem. But what I've come to realize is that it's important to understand what level of impact your actions have on the goal you're trying to achieve. While a positive attitude is great and can mean the world in a situation as dire as treatment, it's become clear to me a few things....

One of the first things you should understand if you're going to start a Hep C treatment is that it's not a goal. How hard you work, whatever you do has very little impact on the success or failure of the treatment. There are a few things that can help a treatment: proper cleaning and handling of blood/hygiene, a nutritionally balanced diet, exercise, and a good support network.
But besides the blood, it's not much different than everyday precautions.

The treatment is largely out of your control. It may sound disappointing, but it's important. Because if it fails, this attitude can help you move forward. I've failed five different Hep C(HCV) treatments, it's hard not to take it personal, but it's necessary.

Remember that how you acquired HCV was out of your control. Certainly there are high-risk behaviors, and age groups but that's analysis, but it has nothing to do with how you got it. The lack of control as to how you got it, is the same lack of control regarding it's purge.

What matters is that there are factors about HCV you can control.

You can learn more about the virus, and educate those around you.
You can find information regarding treatment, and which one is best for you.
You can reach out to those around you to/for support, physical or online.
You can encourage others to get tested, to understand your abilities, and to understand prevention techniques.

This treatment isn't a goal, it's an obstacle, just like the virus itself.

The only goals you need regarding treatment, are the one you make beyond it.

Wednesday, May 27, 2015

Ink Blots and Arm Chairs

The last time i was here, i asked for my photo to be taken where they draw my blood.

I was excited to finish treatment, i told the ladies behind the desk "I'll see ya in six months!"

I should have taken this blood test when my doc ordered it. But I'm two weeks later than i should've been. I didn't want to go back, to come face to face with my failure again. In a weird way, this was my way of stalling, of taking in small aspects of my failure, to help myself deal with it.

When i smiled and said hello, they knew.

When i wrote my name down, they knew.

Concern hidden in their face as they quickly searched for busy work.

The phlebotomist looked at the orders and explained to me what i already knew:

"There's a test here, one I've never seen ordered, ordered for you before. It'll take a moment to see how they need this."

She readied the orders, and vials as i wait.

I've sat in this chair, in this hallway dozens of times. The earth tone swirls on the floor haven't inspired me to imagine what they could be, a Rorschach test of carpet it's not. But that doesn't stop me from trying.

I could go to any number of places to get my blood drawn, but i go here.

Perhaps i find myself similary, in the hallways seemingly perpetually under repair. Perhaps it's the fact that they have not bruised me yet, whatever the reason I'm here.

In this chair. It's just comfortable enough to want to leave after a few minutes. So beyond my worry regarding this test, i am growing more antsy with each moment.

The door just out of sight taunts me, creaking slowly as it shuts to a hushed slam.

As time passes, the earth-toned ink-blots dance on the floor in my imagination since the wifi won't give me access to reddit.

The girl behind the counter informed me "it'll take a while to get the information and to see what lab and where it needs to go."

So I left, waiting for them to call with an update.

"Tomorrow," she explained, "...tomorrow come in and get drawn in the morning."

The test, as it turns out is a delicate one and needs to be as fresh as possible.

This is the test that will help me determine what's going on. My now larger team will be analyzing every bit of the data, if not for my sake, then simply for curiosity. Failing Harvoni isn't unheard of, it's just very unlikely. So data like this is helpful in understanding what can and does go wrong.

Hopefully sometime next week we'll know what's going on.

Friday, May 15, 2015

Bad news for people who like good news

With my present degree of liver damage, my cirrhosis is beyond repair. What's left of my liver is riddled with an ever voracious virus. My body writhes in pain from the ever-worsening side effects. The referred pain in my shoulder has become a now constant reminder as I attempt to sleep.

With each failure I come to new introspection.

To count I have failed:

Interferon and Ribavirin twice.

Interferon, Ribavirin and Incivek (the triple cocktail which cured my mother).

Sovaldi and Olysio.

And now, I have failed Harvoni.

As an aside, I want to explain that I am not typical. If you have Hep C, do not expect these results, know that I am the extreme.

I have struggled to find the words to truly encapsulate the fear, dread, and ultimately sadness that have overcome me. So please forgive my brevity.

While on Sovaldi and Olysio, I cleared the virus, but it came back with a vengeance. Harvoni allowed me to clear the virus faster, and for longer, however it too failed me.

I have escaped death a handful of times from complications as a result of my decompensated liver.

But here I am. I shall not die so easily. We are all endowed with the insatiable human spirit, whose passion shall not be relinquished to something so small.

And now I must pause, before I look forward.
So that I may know my bearing, to find a suitable course.

More blood tests are coming to closer analyze my virus.
For what is a patient without patience?

I found out the results yesterday, and as I've slowly told people I am glad to say I am truly blessed to have such great friends and family.

I am exceptional.

To quote the late John Paul Jones:

"I have not yet begun to fight."

Monday, May 11, 2015

Host with the most, am i cured already?

This month I completed the Harvoni treatment, which was a heart pounding 24 weeks. The longest single treatment I've been on yet. My longest one, prior to this was Incivek at 17 weeks.
In total I've spent over a year of my life on treatment, and it's been a roller-coaster ride the entire time.
As in every year, they add a new more dangerous yet exciting roller coaster.
Last week I also took my end of treatment blood test, and I should have the results back on Tuesday.

Okay Rick, that means you're cured! Right!?
Well... no.
What. All of that, and it's a no!!?
Yea, sorry viruses have a schedule all their own, and they don't need no man!
No seriously, they can exist on surfaces for like 6 weeks on their own, which is more than some teenagers nowadays.
Anyway, the point is that there are essentially three(sometime four) test markers that determine success or failure.
The first marker is around  a halfway point, or the first zero, whichever comes first.
The second crucial test is the end of treatment test, it determines if the treatment is immediately successful, so that's two zeros needed.

The last marker... WAIIITTT!

Oh yea, there are two markers next, SVR 4 and SVR 12. SVR 4 is done four weeks post treatment it is done to make sure that the treatment worked, it's about 99% accurate as a marker for Sustained Viral Response. End of Treatment and SVR 4 are important as if they fail they're used in determining if another treatment, or if something else is needed.
SVR=Sustained Viral Response, I'll get more into what that is later, but know it's the closest thing to a cure with these bad boys.

SVR 12 is a blood test taken 12 weeks post treatment and SVR 12 is >99...% so it's an accurate marker, SVR 24 is clearly even better, but really not by much.

Lets go into a lil Virology lesson, why isn't it a cure?
The RX I was taking, Harvoni, doesn't kill the virus. Only anti-bodies can do that. What Harvoni does is target a non-structural protein in the liver hindering the viruses ability to replicate.

Old meds: boost interferon and give antibodies the tools to fight the virus, also mess with way the virus begins to replicate using Ribavirin. Ribavirin is an amazing tool and it works exceptionally well against many viruses. Hep C included.
Interferon with Ribavirin has an SVR rate of around 56%. And for a long time was the only tool to fight HCV. Compare that rate to modern HCV meds boasting over 90%

In 2011 two new drugs took to the market and changed how we look at the process. Boceprevir(Victrelis) and Telaprevir (Incivek) were both fantastic changes.  Victrelis was a small step in the way the meds changed, both meds were not large-scale changes on the patient side. They included new pills, with new restrictions, and in the case of Incivek would be a trial by fire.
These old meds had a large problem: the process was grueling, and it could take near a year, which lowered the completion rate.
In 2013 everything changed. Sovaldi, Olysio and Viekira Pak were in last phases of testing and readying FDA approval, instead of focusing on the initial processes of HCV infection, they turned their attention to the liver cell itself.

Before the meds targeted the virus in areas 1 2, and 3. Whereas now, the process if focused more on 3,4 and 5.

This super cool graphic illustrates a lot of stuff. Don't worry about most of it. They key part to understand is that each of these new meds targets those points after the NS2-NS3 protease cleavage site (the red arrow). Instead of going for the virus itself, the new meds altered the host via these nonstructural proteins to be less effective for reproduction.

This is a simple breakdown of SVR:
Think of the meds like this: If you have a house infested with ants, do you kill the ants themselves? Or do you poison their food supply? Or maybe even both!

It's a lot like that. New meds poison the food supply, and destroy the queen (the ability to reproduce)

So the Sustained Viral Response that occurs isn't so much an eradication of the virus, because the virus can linger for a while. Eventually without replication/reproduction, those viruses will die. The Sustained Viral Response (SVR) is the goal of any treatment, and I cannot wait for SVR 12.

Thursday, May 7, 2015


Check it out! it's a new vlog!

HCVME is on Youtube this Friday!  New videos every Thursday!

Monday, May 4, 2015

Hugs not drugs

Throughout high school, the knowledge of my immediate mortality pervaded my everyday life. Having seen my mother go through an emotionally wrenching near year of treatment only to find that in the end it was for naught, I internalized the fear of future failed treatment(s). The last thing I wanted to do was infect another person. I viewed myself as if I were a plague. The worrisome reality of my physical repulsion to others slowly became a balancing act in a world of constant physical contact. The scope of my limited life, pushed me to a near fearless level of misbehavior.

The worst of it all was knowing I was not alone. I was aware of the fact that within the population of my high school, statistically speaking a dozen or so other children would share my fate. However I had one odd advantage, I knew I was infected. While this would spell danger later on in my life, at this young age, knowing I had HCV meant that I could reduce the harm dealt to my liver and risk to others. The rebellious decisions typical of youth to enter into consuming drugs and alcohol was not something I even saw as an option. And the best part of my advanced knowledge was that I could get treatment early.

The knowledge of all of this became a secret. I knew that if others knew, they might seek to harm or marginalize me out of ignorance. This depressing solitude sought me to find others who might also be marginalized or in pain and help them. The trouble was that many sought to blend in, and only further obfuscate their loneliness.

My junior year, after watching my mother's recovery, I noticed her veiled sadness as she trudged onward, attempting to return to normalcy having failed. The catalyst for what I was about to do was a blood drive. The teacher at the time offered extra credit to those who donate. I asked the teacher, as I could not donate, if there was another way to earn the extra credit. Infuriated at my request, she barked off the reasons why this would be impossible. A quick trip to the assistant principal's office helped her discover some possibilities. Winning stupid battles like this helped me consider what my future would be like. In my worsening state I tried something new. In the very same class that I'd been yelled at, I stood by the door, and freely solicited hugs. It was a way for me to help others, myself through the loneliness that no one wanted to confront, and to combat my impulse to stray from physical contact.


Friday, May 1, 2015

Wait, what? This was supposed to be a sequel, not a trilogy!

In five days, I will be finished with the Harvoni treatment. Much to the relief of my friends, I will no longer wait for my alarms of Taylor Swift's" Trouble When You Walked In" everyday at 6:50-7:05 PM.

I will no longer wait for weekly results on my blood tests. In five days I will have my end of treatment blood test.
Whose results rest my future. Will I have ten years left? Twenty? Fifty? Will I wait in line for a liver transplant, only to re-infect the organ and return to my level of damage within a few years?

And what happens when I reach the coveted SVR12 (Sustained Viral Response, the point of "cured")? If I can clear it, if in this game of life-or-death tic tac toe I manage to avoid a fifth cat's game...what does that mean for my liver? What does recovery look like?

I am the extreme, What happened to me at the age of twenty is more likely to happen to someone after forty to fifty years of infection. I am lucky, I came from a tiny likelihood of vertical transfer, and at less than 5% I beat the odds, and live with a decompensated liver so early in life... I have been in study after study since I was sixteen. Most studies bulk young people in an under 40 bracket. Inherently, a twenty year-old and a forty year old have wholly different recovery abilities, which only makes data harder to find/interpret.

What research can I find to help me understand what my future looks like?

Almost none. As most of the F4 and decomp patients are considerably older there is simply not enough data to provide more than a strong inference.
Even the classifications (F0-F4) themselves have been recently been looked at.

Where I sit now, the majority of my liver is...well... to say garbage would be an improvement. How my body chooses to handle the different parts of my liver is the subject of debate.

Whatever parts are near healthy will recover in around a year, the early stage fibrosis areas will recover within a few years. But the worse off the fibrosis is, the less likely it will recover. The last chunk of my liver, is the cirrhotic bit, which probably isn't going anywhere.

While there are some RXs for helping the fibrosis, the level of damage to the remainder of my liver has already been done. It is, most likely irreversible.

This is why I'm so insistent on testing, on looking at your options early. Early detection can prevent situations like mine.

I say a lot of probablys and likelys in this situation, because as I said before, I am the extreme.

So true to my nature, I hope to be the extreme here too, and recover in the dramatic flair that has engulfed my treatments.
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