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."

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.

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.

Know More Hepatitis

Be #hepaware

Some info for those who don't know

There's a lot of information out there regarding HCV, and sometimes it's not always easy to digest all of the information when you'd like to know a little more about Hep C and its treatments.

If you or a loved one recently tested positive for HCV, and then the follow up confirmed Hepatitis C:

Below is a handy info-graphic i made.

Some of you may recall  the one I made one last year, however with spelling errors and tiny fonts it wasn't very pretty.

Update 4/28/15:I decided I didn't like the way the info-graph I first posted looked.

So I made a new one, it's a little better.

Here is a direct link to a larger version of this image.
Watch the zooming, it's considerably larger.