And So It Is.

This will probably be my most personal blog to date.

I have been lost in exploration lately.

Rather, I should say I wander, not simply that I am lost.

This blog has been an unforeseen gift to me, allowing me to look back at my thoughts years ago, and understand where I've come from. To better understand my mistakes, and to live better than I have. I have learned to strengthen the bonds near me, and now I should seek the same connection with others. I value every bond I share, and if I am to truly know myself I must share more personal moments with friends.

If I have not extended a hand to you yet, I implore you to seek me out. Because I appreciate you as a friend and I want to experience something you truly love with you. A place or thing that represents who you are, your happy place, if you will.

In the same spirit, I have a few weeks remaining on my Disneyland pass, (basically the 15th of December), and I want to share my happy place with you. So that I may know and experience my favorite place with you. I realize I may never go again after this. There are a lot of factors involved with this reality, the price increase is part of it, but there is another hurdle.

For the last 4 years, I have had a steadily rising cumulative probably of death. To say I'm beating the odds isn't entirely true, I'm simply very fortunate. As I presently stand, without any treatment my probability of death reaches about 94% by this time next year. 

Including the odds of a successful treatment my outlook improves dramatically. Even if the treatment fails it could extend my gambling habit for another two years, as previous treatments have extended my stay. There's a lot I cannot account for but with the odds I can see, there is about a 9% chance that I become terminally ill this next year and will not make it past 2017. It is something I have taken months to really accept, but I have to learn to let go, and accept what I cannot change. I would rather focus on the hope of success, but I cannot ignore the parts I dislike, I must understand them, and accept them.

This isn't some weird dying request or whatever, the odds of me living and getting cured are pretty great as far as I'm concerned. I simply have reached a point in my life, where I cannot abide weak bonds. If I am to grow, I must humble myself to learn from and better understand every soul around me.

On another incredibly personal subject, I am a Deistic Religious Scientist. And the last few months have affected me deeply on a spiritual level. I don't talk about my faith, mostly because there isn't a lot to talk about. Religion has always fascinated me, the tenants, mysteries and what amounts to articles of faith. My faith compels me to understand all forms of belief, and to understand my friends through their faith. It's an aspect of my faith I regrettably stopped paying attention to after my first treatment.

I will also take a small bit of time to explain my faith, so that you may know me better. Most people do not know of either aspect of my faith, since they are incredibly obscure and I so rarely talk about them.

In essence it is a "belief" in a unity of all things through God. That God is within everything and everything is God's will. Good is infinite and an inherent quality that can be understood and accomplished with prayer, meditation, and/or acceptance. There is a universal harmony, a balance, that every moment is complete and perfect within itself and the law of cause and effect is always in motion. That immortality is achieved through our very existence, because life moves in perpetuity. I believe in the mystic concept of a Cosmic Christ, not a person, rather a universal presence, an image of God present in all creation. That it is a God-like consciousness that was and is present in all Prophets and enlightened people who use this in a positive evolution of society, mankind and/or personally.

As a Deist, I find the form of religious science to be my truth. I am compelled to understand the bonds of faith that exist within my friends, so that I may better understand them and my own faith.

As a Deist, I find validity and wonder within all forms of faith. Because the core understanding within Deism is simply a belief in God, the personal relationship of a religion is up to the Deist as an individual.

It is ever present in my life, I don't usually talk about it because I'm actually always talking about it. It is my way of life. I do not invoke the name of God when it's implied so frequently. As a gesture of gratitude to my faith, the symbol of my will bears resemblance to the symbol of Religious Science. 

Left: Symbol of unity from Religious Science.
Right: V of Acceptance and Struggle: HCVME

HCVME is the manifestation of my will to become more than I am, to better connect with others and to be open about my challenges so that I may better understand theirs. So that through the power of empathy and perspective we can overcome the social hurdles that face Invisible Disabilities. 

The name HC<ME (HCVME) is also intended to evoke the iconic HE>i, which is a shorthand for John 3:30 "He must become greater and greater.  I must become less and less." But instead flipping the idea on its head implying  1 John 5:4 "Because everyone who is born from God conquers the universe; and this is the victory that conquers the universe - our faith."

If you are a new friend, or someone I've yet to meet Email me: Canythingbutaverage@gmail.com

And of course, if you need to talk to someone about Hepatitis C(HCV) and you're not sure where to turn I'll do everything I can to help.

The Transplants

I received the call at 8:39 PM

I was expecting a call from my parents when the phone rang. When I saw it was from a restricted number, I started off apologizing saying "Yea, I meant to call you back sooner, sorry about that." A little confused, the man asked my name.

I was playing Sid Meier's Civilization 5 with a friend at the time, a very mellow video game. The man began after he confirmed who I was, "Hello Rick Nash, I'm calling to tell you that you have a liver offer." My eyes became transfixed on the wall as he explained to me the details. I was jarred from my seat standing, as if that would help with understanding. He explained all of my options very clearly, I could take the liver, or not and it would not affect my standing for a transplant. There was one hiccup:

It was a high risk liver with HCV.

I told him that I'd call him back with an answer. I had to act fast, an hour was all the time that could be spared. I spoke with my parents and friends to work it out.

In my present state, my MELD score is in the high teens, which means I'm not in an immediate danger. However given my proclivity for the ER, I seem to find myself in life threatening situations every so often. And if I were to be hospitalized it would likely result in my needing a liver.

With that in mind, taking the liver offer becomes a pre-emptive strike approach. If I take the liver it would take a year for my body to get used to it. By that time I will decompensate and be worse off than I am now. And I may also be unable to take the new treatment(s) in 2016 while I'd recover. This pre-emptive strike is more about risk mitigation than anything else.

Besides the affect of my end stage liver disease, I'm otherwise healthy. I'm young and there is little information on recovery following a treatment for young patients (let alone with MELD scores). I could potentially live for a few more years as I am, before needing a transplant. And there are two upcoming treatments which deal with my scenario and trials I could participate in.

When laid out in front of me, the decision was clear. I'm in it for the long haul.

After weighing the options, I called him back and told him I will pass on the liver offer.

When I signed up for the liver transplant program two years ago, I hadn't yet realized just how suddenly these kinds of things are. 

A liver offer has a very limited amount of time to stay viable,

and I have to be ready at a moment's notice to be at that center when the time comes. Which also means I need to have my phone near me at all times.

In the end it I feel it was a potentially worse short run decision with better long run results.

Shattered for Good.

Recent events in my life have done something amazing and in common theme with my life are presently bittersweet.

The realization was due to some heavy introspection...

I was deeply depressed after Sovaldi/Olysio failed, but I didn't realize how long that depression would last.

After I left the hospital in September 2014, I was a shell of myself, trying desperately to figure out my life. And while I found motivation to keep moving forward, persistence though pain is not the same as living. Daily tasks become hard-fought and over the months I found myself unable to do more than a task at a time. I was scattered and constantly procrastinating.

The remedies to revive me, didn't work as they had in the past, and until the Harvoni treatment was guaranteed I was degrading into a recluse.

But the reason I couldn't pick up my bootstraps is something even further back. When I left the school district, I lost that part of my identity. I put my focus into treatment entirely, and slowly dropped most of the things I loved to do. I had decided that my only goal was to be cured.

I had put all of my emotional energy into being cured, leaving little for myself and others.
Which was a terrible decision.


While I would grow closer to my friends through the roller-coaster of life, I put everything including myself away. As my treatment began, I found support from from friends and especially my girlfriend at the time. She is inspirational to me, and I became the advocate I am today in large part because of her. After the first zero I was elated, this was the first time I had this success. My goal was accomplished! So I started to get involved even more with advocacy, my team raising thousands of dollars over the years now. I wanted to transition from working with kids, to working with technology and kids, and began to look at the idea of graduate schools. I became even closer with friends and family.

But in September of 2014, it hit the wall. I had foolishly used my illness as an excuse to myself not to push myself further. I'd never truly resolved the questions in my mind, the despair that came with the wind getting knocked out of me from the failure of Sovaldi. My mind, and the spaces I would inhabit would become cluttered, slowly.

So I would go through my Harvoni treatment, sure that it would work, when I saw the zero I was hesitant to be but still excited. The failure brought me back to square one.

I found simple tasks daunting. I would rarely move throughout the day. My room, everywhere I lived was symbolic of my state of mind. Tasks were harder, not only because of my mental barriers, but because things were literally hard to find. The idea of walking to I became lethargic and gained a lot of weight. I felt like every day would be my last, which isn't as magical as it sounds, because the implication to myself was that i would rather die than be responsible for my actions. The medications I would constantly balance wouldn't help my state of mind, paranoid and confused I had degraded to my lowest point.

After a long phone call, my heart sunk. I realized how pathetic I'd been, how fearful, how absurd the methods of my madness had become. I couldn't live like this anymore. Shattered, I finally understood how I'd been sabotaging myself.

All the things I'd wanted to do over the past year, suddenly seemed possible. The idea of leaving the house wasn't frightening and tiring. I reorganized my priorities, and began to de-clutter.

I use memory anchors to compensate for my slowly degrading memory and brain fog. It's an embodied object for your mind. Every memory is attached using different senses... it's like when you smell something familiar and it reminds you of something. Certain types of cigarette smoke remind me of when my grandmother would smoke on the patio and convince five year old me to get in some kind of trouble to drive my dad crazy.

As I de-cluttered, memories came flooding back. I had covered my anchored objects in a room filled with trivial trash and dirty clothes. My windows were dark to keep out the light, because while on treatment my photo-sensitivity went up, but I would continue to use it as an excuse to keep the room dark. The bamboo, Devil's Ivy and Peace Lilies, slowly began to die. I opened up my room to light, and as I type here now, instead of a dark brown curtain, I see palm trees, and a cloudy sky. I have regained a level of focus and excitement I haven't known for years.

Having my eyes just recently opened, I see so much more, and will see more to come.
The worry, the fear I had is gone.
I can actually say, that I'm no longer depressed.
I have a treatment coming up in January, but it's no longer the focal point of my life.
So now, as the great Ben Franklin did, I wake up and I ask myself
"What good shall I do today?"

Hope is not a four letter word

Merck.

We've been seeing DAAs like Sovaldi come out lots of labs, but we're about to witness the rest of the big companies throw their hat into the ring. Gilead's use of the Warehouse of Hep C (HCV) patients has led to historic profits for Gilead. Johnson and Johnson's Olysio tapped into the market, and Bristol Myers Squibb's new Daklinza (daclatasvir) are filling the gaps Gilead's Sovaldi left.

And soon Merck is about to throw down one of the most virally specific DAAs around. The new combination treatment will be able to cure even cases previously failed due to RAVs (mutations).

Why am i stoked?
Because it may be my sixth treatment.
So what makes it different?

Well first off two/three phases have been done with higher efficacy than Harvoni.
C-Edge and C-Salvage.
C-Edge is similar to most DAA studies, it's efficacy is unsurprisingly high.
C-Salvage as the name implies is specific not only to people who failed interfereon/ribavirin, but also failed a DAA like Sovaldi/Harvoni/V-Pak. It's going after people with NS3 and NS5A variants like myself.

The C-Salvage study has the best results i have seen for someone in my situation.

Previous treatments I've been on had an 84-86% success rate when it came down to my genotype, and cirrhosis. Usually being even lower for decompensated liver patients, however it still positively impacts MELD, so it's not all a waste.

The C-Salvage boasts an unbelievably high success rate: 96.2%

The new drugs names: grazoprevir and elbasvir.

So damn catchy, aren't they?

Annnd it's slotted to be FDA approved during the early first quarter of 2016.
Annnd the new grazoprevir and elbasvir treatments could be as low as 16 weeks instead of 24.

Troubles: The study doesn't specifically mention which variations, as those may/may not have an impact on success. So in this aspect it's kinda a crapshoot, because until later this year we won't have clear enough data to say that it will or will not be successful for my specific variations.

Troubles: Price, with the way Hep C meds are presently being marketed it would not be surprising to see a hundred thousand dollar price tag. Merck will also probably offer a massive discount program similar to Gilead's MySupportPath.

And this thing... keep an eye on the TPP...

The Trans Pacific Partnership. As i highlighted in a series of blog posts regarding why Medicaid is waiting until people are dying to cure them, the TPP will play a large role in how insurance agencies, Managed Care Organizations, Pharmaceutical costs(and carve outs) are going to be set over the next few years. 

With the TPP disclosure coming out soon, and congress to debate it, this will undoubtedly play a role in access to Merck's new meds, and the prices it offers consumers and insurance agencies.

C-Edge Study:
http://www.natap.org/2015/EASL/EASL_04.htm

C-Salvage Study:

http://hepcblog.amjmed.com/hep-c-treatment/c-salvage-final-24-week-follow-up-results/

The gray area of ADA protections.

In 2006, an ADA case regarding Hep C helped set the tone as a reminder of just how gray ADA protections can be for Hep C.

EEOC V. Heartway

A woman worked in the kitchen of a senior's nursing home, upon cutting her hand it was revealed that she had Hep C. She was sent home requiring a doctor's note for clearance, when she attempted to return she was subsequently fired. The manager complained of the risks of exposure citing a potential mass exodus if this was made public.
His claim was that she was fired because she lied about having Hep C on her application.

The case would prove the manager's actions as illegal and her claim that she was fired as a result of Hep C was upheld.

The case also expanded on where Hep C fits within ADA protection. Hep C itself is not a disability, it's protected under the "Regarded as" interpretation. "Regarded as" is basically the idea that if the manager assumes it's a disability, it's a disability.

This is also incredibly hard to prove, unless like in this case the employer decides to say something akin to: “you having Hepatitis C, you will not work in our kitchen." It makes these cases slightly more clear.

I've disclosed my Hep C several times to employers with mixed results.

In 2010 I worked for a school, my supervisor was new to the field and was never given the training she was supposed to be given. Having worked in this field for six years at the time we began to butt heads.

I was looking into starting the Incivek treatment at the time, and explained that I have Hep C and went over how that may affect my ability to work. I asked for several days off/less hours on those days so that I could go to my tests and doctor's appointments. She explained that she would get back to me on that.

I was not prepared for what happened next. She scheduled mandatory staff meetings and events for the days I requested. She presented me with a new schedule of hours, switching me from working 10-6:30 to 6:00AM-9:00AM, 1:30PM-6:30PM. She began to make the essential functions of my job practically impossible to do. She'd made comments to the effect of questioning my ability to work due to my needing so much time off, stating I could barely get the work done during the time I had.

Her aim was to get me to leave, or fire me for poor performance. With the help of a fledgling union I was able to delay most of her evaluations and help determine when the meetings would be. She began to pit the staff against me, and I saw two options ahead of me.

If I fought this, the ADA protections are too vague, and I could've spent thousands of dollars and years in litigation.

So instead I did something different.

I explained to the staff that I had Hep C, and an upcoming potential treatment and did a q and a. The staff was understanding and compassionate. However, the stress from the situation would already leave its mark as I unknowingly began to lose blood internally. I was hospitalized for an esophageal bleed, when I returned to work I was pink slipped. The pink slip had nothing to do with everything that had happened, it was downsizing. It was the wakeup call I needed to leave the school. I continued working at other schools within the district, and doing tech support full time.

I would love to say that this is the end of my frustration with my employers and Hep C. While doing tech support my managers and co-workers were supportive and kind, the same can be said for the seven other schools I've worked at.

Years later I worked at an elementary school. I didn't need to disclose my Hep C to my supervisor, she already knew of it from friends of mine who worked for her in the past. I was unaware that she had no intention of allowing me to gain permanent status. She constantly pushed for me to take days off if I were sick or not feeling well. It was during my employment with her that I was diagnosed with Hepatic Encephalopathy and Ascities. Due to my worsening ascities it became hard to walk or move at times, I also struggled on several essential duties, but due to the Encephalopathy I was unable to explain it. Because to me, everything was accurate, I didn't understand that when out of balance I would be unable to properly do basic math consistently. Lactulose would correct this, and before I was terminated I was successful in this task. With medication, the issues were no longer a problem. In early December I had an impromptu evaluation, and despite my meeting of each goal, I was let go.

The reason I say that she had no intention of allowing me to gain permanent status is because she already had someone chosen for the position. Someone who was unqualified for it at the time, her intent was to hire that person when I was terminated because by then she would be qualified.

In this scenario, there was no intent to replace me due to my disabled status, however it was utilized as part of the reason I was eventually terminated. At the time I understood that I could request reasonable accommodation even at the late date of that final review.

However, I also understood that while that would allow me to continue working for her, I had little interest in reliving the adventure which had happened a few years ago.

During the first work situation with Hep C, it would have been hard to prove that Hep C was the defining factor, despite it's clear use as a means to attempt to terminate me.

The second situation gave me the ADA protection I needed, but would have been stressful and I would have had to fight my supervisor for the rest of my employment there. And by this time my decompensated liver severely limited my work options.

While there are protections under the ADA for Hep C, they're hard to apply because of the nature of discrimination. Until the disease worsens or treatment begins, Hep C often falls under the "Regarded as" category. This makes it very hard to determine if there are no statements or actions that directly point to Hep C.

You can't be fired for having Hep C, but the question of being fired for excessive absences as a result of Hep C is up to a jury to decide. EEOC v. AT&T

Most people with Hep C who seek treatment often find a looming financial burden of large medical debt associated with treatment. Many with Hep C are presently forced to wait until the disease worsens to even be able to get that treatment, so while waiting their need for medical care increases.

While the EEOC can help someone fight a case like this, dealing with a case, treatment, and attempting to work so that they maintain insurance/income can be a monumental task.

So what can anyone do to help?

Help stop the stigma, correct people when they talk about Hep C as some kind of monster. (as we said at the school I worked at: "Be an upstander, not a bystander."

Support organizations like the AASLD(they write the recommendations for everything liver related) and NVHR(they help pass Hepatitis related legislation).

Vote for candidates who make it a priority to stand for patients' rights.

Caveat Emptor

It's almost as American as it is Roman. "Let the buyer beware."

In the US we advocate this a strange notion of preparation. So when it comes to healthcare, we've put ourselves in an awkward position.

I came across some inspiration from imgur 



Roamin' Phrases.
Welcome to the United States of America, land of the free, home of the brave.

Laws pay me no mind, I'm a freelancer in the cracks and crags, live with the hacks and hags of society.

The idea and principle that I navigate the labyrinth under the legalities means that I am temporarily live on the outskirts of the law.

I'd love to be protected, but the shield costs money I don't have. Tickets as if I'm going somewhere from different states, different counties.

Last notice! Papers pile high, on the table, gladly pay it all if I were able.

What's the law to those in the labyrinth? Here we chase freedom in hopes of scraps that fall from societies favor and become available to us.

In here, you watch your step, there's emergency care but you'd better have insurance. Make all checks payable to the feet that blot out the sun.

Insurance agencies at every corner down here, the world knows the labyrinth exists. Tens of millions live in it, they'd be blind to ignore it. Each agency employs us, telling us what to do and how to live if we want their pittance.

Money is free speech, money can travel the world to exotic accounts in the Caribbean, or the Alps.

Money holds thousands of insurance employees hostage as it demands more vacation hours.

Bills, from sneezes, lawsuits from companies claiming ownership of the breeze down here.

They already own all the hot air.
So we run after false profits, don't run in the labyrinth, you'll trip. A broken ankle will cost you an arm and a leg. "But I've got insurance" I told them. Apparently my network only extends to one doctor 30 miles away, my cell phone has better coverage.

But it needs to, it's got ads to sell me, and apps to sell me. Already paid for the hospital when it was built, that was for the pre-release, who knew there'd be hundreds of day one DLC?*

It's dark here, I wish we were outsiders, I wish we're the outliers.

Lines of string litter the floor, looking for the exit, ridiculous you can climb out anytime. These walls aren't that high.

Climb over the bodies that make up the surface, these walls are made by those before us.

The last of someone's sweat, blood, straw build the bricks of tomorrow.

Up there, the sun shines on monuments dedicated to the austerity of the posterior. A history that never was, made of legends men told to justify their lordship.

The labyrinth is the foundation of their pomp society. Seeds of knowledge drop from trees too large to cut down. The library's branches spread ever outward. Knowledge of my nudity does not protect me from the cold.

Awakened from my slumber by a solitary beep.
The IV is out of fluid, it's the second time this week.
More concerned about coverage of my cell network
Litigiously inspected every goddamn perk.
No mind, insurance, nine to five times as much.
Didn't realize my car would cost less than a crutch.
Didn't know it's Kaiser's face on the hundred thousand bill.
But when I first saw the thing, I passed out from the thrill.
Labyrinth obscure me as a number on a sheet.
Thirtieth time, in debt, someone will die this week.
Worked hard all my life, to move up someday.
The maze; a debtor's prison, as there's hell to pay.
This is my last straw, they'll be bricks no more.
It's time to be unburdened by Caveat Emptor.




*Pre-release or pre-purchasing in the video games industry refers to paying for the game before it comes out. Day One DLC refers to Downloadable Content which is available at an extra cost when the game is released. Day One DLC can consist of expansions to game-play, or can be what was prior-to-release assumed to be part of the content of the program itself. It's basically a really complicated Bait and Switch.

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.