Five failed treatments and a Liver Transplant brought to be cured by my Sixth treatment! Follow me @HepatitisMe on Twitter DefNotRickNash on Instagram
About Me
- Rick Nash
- Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!
Showing posts with label blood test. Show all posts
Showing posts with label blood test. Show all posts
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.
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.
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.
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.
Wednesday, April 22, 2015
Sometimes you just need a happy song
As i approach the last two weeks of my treatment, the anticipation of my next blood test is one of reserved excitement, as in some ways, I've been here before.
During my last round of treatment (Sovaldi/Olysio) I took my six week blood test,
On that same day the Yes! Album by Jason Mraz came out. It's not his greatest album, but it's timing, and it's message have become important to me. I quickly became a fan of the song 3 things
During my last round of treatment (Sovaldi/Olysio) I took my six week blood test,
On that same day the Yes! Album by Jason Mraz came out. It's not his greatest album, but it's timing, and it's message have become important to me. I quickly became a fan of the song 3 things
It spoke a lot to the struggle, and constant necessity of pushing forward and keeping a positive attitude. The following week I received news that I had my first undetectable viral load.
The excitement I felt, was matched by every illuminated face I told, my every smile I was met with, by every drop of joy that came out of the situation.
But it was premature. Not two months later I received a worrisome report regarding my last lab, shortly afterward the virus came back and hit me so hard my MELD score shot up in the high 20s, hanging out with my bilirubin levels at the time. While I was hospitalized due to my failing liver, I was notified of its resurgence. It was crushing, but it's about moving forward and when my bilirubin began to return to normal, I started Harvoni.
The song followed me throughout all of this, and I hope its lighthearted acoustic Graceland-esque sound speaks to you as it does to me.
This happy song reminds me of the importance of struggle, seeing through the darkness, and of routine when things seem to fall apart.
Labels:
3 things,
bilirubin,
blood test,
happy song,
Harvoni,
HCV,
Hep C,
Hepatitis C,
MELD,
Mraz,
Olysio,
Sovaldi,
undetectable,
zero
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