Inertia and Inhibitors

In the last year a great deal has changed for patients with Hep C. Multiple treatment options with minimal symptoms which take half as long or even less, a renewed focus on testing, and a healthcare overhaul have all been at the forefront.

We're also seeing a trend of high cost medication, with a round of treatment costing twice as much as the poverty rate for a family of four.

Medicaid clamped down to only approve the sickest of patients, many states requiring permanent liver damage before treatment can be an option.
States will begin to get better pricing when election season is done, but depending upon how the TPP goes, it could be better or worse.

Private insurers have similar policies, taking advantage of the discounts offered to patients and often denying coverage.

Cure rates for most treatments remain 90+% and more treatments which use Protease and Polymerase inhibitors are on their way. (Protease and Polymerase are two different approaches in destroying the virus, they combine to be far more effective than alone/with Ribavirin)
So what happens when you're not part of the 90+%?

When you've spent years of your life becoming familiar with health insurance, FDA studies, and in hospitals/clinics. When you grow up memorizing hallways, bizarre wallpaper, medical pamphlets and illustrated guides, all of this seems pretty normal.

I've pressed on past each failure, and usually each time they've found a more specific reason why it didn't work.

I have failed five different treatments, and recently I found out why.

I have three mutations which combine to prevent protease inhibitors from working properly.

Originally I was under the impression that I had the q80k polymorphism (it's a weird mutation that can prevent protease inhibitors from working without a combo of meds) which was an accurate assumption until better tests were able to pinpoint why Harvoni did not work.

While failing one protease inhibitor does not mean another may fail, it does reduce the chance of success significantly.

The combination of mutations I have prevents Ledipasvir (the protease part of Harvoni) and most NS3/4a inhibitors from working as intended.

NS3/4a inhibitors = protease inhibitors= Olysio/Simeprevir, Daclatasvir, Ledipasvir, etc...

So what happens now?

Nothing. Now that I know which drugs I cannot take, it means searching the web for any potential studies which are for Treatment experienced, f4 decompensated patients who cannot take protease inhibitors.

Why I say nothing, is because that's presently what I've found. I'm certain that at some point they'll find a new way to attack the virus but until then my life waits.

I'm uncertain how long I'll live. Depending on my luck, I could have a few years still until transplant.

Transplant is an extension, the likelihood that my liver will decompensate within a year is about 50%, as I will re-infect it. I could push a few more years past that, but it's hard to say.

To say that this isn't depressing would be absurd.

When a chilling reality like this hits i accept it, i embrace it, i understand it, and i forget it.

I accept that my health outlook is grim and will ultimately defeat me.

I embrace the problem and refuse to define myself by it.

I understand the precautions and limitations I face are guidelines, not rules (but seriously though, some are still rules).

I forget it, because the focus isn't on it, my focus is on me.

To move forward i must turn inward and find small bits of motivation to get me moving.

An object in motion will stay in motion.

Cold compresses and hot soups

Every time I go under for an upper endoscopy there's always some type of clarity that happens the following day. I typically sleep so soundly, It's hard to describe, but it's a mental calm. A lot of the constant stresses aren't as intense. It's a nice pause, for what it is. While they test for RAVs and see what they can do for me, I wait and see.

The endoscopy gives me a chance to give my friends a view into some of what I have to do regularly. Nearly a dozen of my friends have been my driver for the upper endoscopy. They'll relay important information back to me, regarding any RXs I'll need or any suggestions the doc has. Since I have little memory of the event, I am completely reliant on whomever is my driver.

I used to think of it as a chore, but now I view it as an honor. Because it takes a deep level of trust to give someone that level insight into my life and the responsibility of taking care of me for a day.

I have yet to find a friend unable to take on this near half-day inconvenience. My girlfriend was my driver this time, and she relayed good news. No banding this time! Yes! Getting banded is not so bad when it's winter time and soups nice and hot...but it's pushing 90 Degrees Fahrenheit and soup just doesn't have the same draw that it does in the winter. ( When banding occurs, soft food diet restrictions can last a week or two.)

I've also learned that my acid reflux is worse than it used to be. So I've started avoiding foods 2-3 hours before bedtime, and sleeping in a reclined position.

Which was great last night...until I accidentally snapped my pinky toe.

What a useless toe; my toe caught on a chair, and well... it snapped out of place to a 45 degree angle off my foot. So I just popped it back in, it's pretty swollen and bruised. But as I see it, if my knee can withstand a car without breaking, my pinky toe can withstand a weak and cowardly chair. Thankfully, I've equipped my home with first-aid response kits and cold compresses. R.I.C.E. (Rest Ice Compression Elevation) every hour for 20 minutes or so has brought to wonder one thing about this experience overall. Why is Ice the second word in the RICE acronym? It seems like an odd choice, it always forces me to second guess if the I really stands for Ice.

Long story short, I now get to sleep in a weird V shape, while having to get up every 2-3 hours out of pain or having to pee. I can't help but laugh at my situation. It's not horrible, it's just terribly inconvenient and annoying. Which brings me to the point of all of this:


It's not so bad. While yes, at times I may not be able to walk because my legs have ballooned to look like overfilled sausage casings on the verge of bursting, or the muscles spasm out of control because I messed up my electrolyte balance. Or the increasing joint pain that makes my knees ache...I can walk mostly, I can move on my own power. And though I have times of incompetence, It's not so bad.

I may forget what's going on, become confused easily, have strange heartbeat patterns, my eyes will ache easier than they should, and I bruise like a person more than twice my age. My bone's are still strong, and while my back may ache from the liver pain, I stand up tall and enjoy what is here, because it's not so bad.


I could go on ad nauseam, but what I've seen is that there is good hidden within troubles. I've come to appreciate things that may seem strange to others, even this stupid toe injury. I can't help but laugh at my own misfortune. Seeing the good, has always helped me find hope in every hardship.

This is part of my mentality, why I refuse to give up, and do every treatment I can. I will do better, and with each step forward I will do best. Because I have not so easily resigned myself from this life. I shall live as best I can, as I can, because best is enough.

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."