Deviated September

Yesterday was my fourth blood test, in the last month. My bilirubin and INR have been at a levels worry some enough to postpone treatment.
(The cost of a treatment is more than the meds alone, this month I spent over $350 out-of-pocket costs and that's with insurance!)

With the help of my family and advocates I was able to negotiate better terms on the price I can bear. But all of this is contingent on my having my present insurance and that I'd ordered and received it before I switch insurance September first.

In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice.
This is my third Gilead treatment, so it's hard trying to lobby for support.

While I'm pushing to get the hold/stop order from my doc removed, I'm also moving. (Which when you have health concerns requires certain things.)

If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment.

It's about time.

That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off.
The weeks I lose waiting for treatment aren't just the time now, it's less time later.



To savor every day that I have, that is all i can do.

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.

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.

Jaundice, HCV, and Me.

I haven't spent much time on here talking about myself lately. I've been wrapped up looking for more information regarding insurance, and trying to analyze the political climate and new concerns about HCV.

So I'll be posting or presenting a handful of potentially peculiar posts until my next doctor's appointment in August. Because It's time I get you up to speed. On moments, with friends, because they're important. Because they help me better understand how I approach this physical and emotional battering ram, with small and subtle gestures.

This past weekend, we had installed a new bulb in the kitchen. It's a bright white bulb, the light had been malfunctioning for a while. Since most of the bulbs in the rooms are soft white and shades of yellow, things appear their actual color.

Most of our lights are soft white or yellow intentionally.
My bilirubin has been bizarrely high since I graduated high school. I've always had a shade of yellow to my skin and dull eye whites. I've learned to obscure it with color, lighting and getting a little tan.

My brief experience with extreme jaundice confirmed what I assumed would be the case.

Call me.. Golden-eye.

I stick out. Especially as the jaundice also extends to the whites of my eyes. Normally now my eyes have a hazy yellow instead of a typical white sheen. When the jaundice is bad, it's jarring.

When they see it most people can tell I'm probably sick, but it's hard to understand. As it's the only characteristic they see and besides that, I appear healthy.

I was in the kitchen when a friend of mine noticed my jaundice from a few feet away. Concerned, he asked me about it. It's something I can't see without a mirror. It's something I can't tell because I see things with a slightly yellow wash. A camera is best, a selfie under a white light with my eyes wide open will tell me how jaundice my eyes are. I can compare it to something I know to be white.

Panic,
Fear, anxiety rushed into me within a second. I'd have to go back to the hospital. I'd be there for a while, and this could happen at any moment.

It was a sobering realization, that any day, I could wake up look in the mirror and say "Shit. Where the hell are my Go-Bag, Keys and Wallet?"

As much sadness as it brings me, as much fear as it brings me, dwelling on hang ups slows down my response. A response that's crucial and could involve whether I live to make it to the hospital or freeze up and delay timely medical assistance.

For a moment I stuttered, I realized I'd forgotten to take my meds that day. I downed them quickly and I took the photos under two different white lights, compared them to white objects. I was normal, well for me anyway. It was simply the case that my friend had never seen the more pale part of my farmer's tan  under the bright white light.

I'm rather relieved that this was the case. But I realize that it is very likely that I will become more and more jaundice as I approach the need for a transplant.

But I guess it's good to know that at least I'd have survived The Battle of Bunker Hill. So I got that going for me, which is nice.

The Battle of Bunker hill is where the phrase "Don't shoot until you see the whites of their eyes." came from.

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

If this title were a pattern it would be damask.

There is a long list of terrible health issues most doctors will tell you regarding the health factors of smoking cigarettes.

If the varieties of cancer, lung, heart, and throat problems sound terrible, there is one other organ that is constantly affected by smoke.

The liver. Smoking with liver disease isn't a good idea and dramatically raises your chances for liver cancer, but what about it's affects on other liver related issues?

For a time, i smoked cigars, not really realizing the full extent of the damage it was causing.
It's not hard to see that the liver would be adversely affected by smoking, as it filters your blood.

Assumptions are great, but it's better with facts.

The study looks at Cigarette smoking's affect on the liver, as well at its affect on a compromised liver (NAFLD/NASH)

Cigarette smoking, in the short term:

"...these results indicate that smoking does not cause acute effects on the liver."

Short exposure to cigarette smoke doesn't have a huge impact on the liver, which can imply that occasional/short exposure, to second hand smoke will have a similar result.

But what about the long run? 

"...These results show that (cigarette smoking) induces profibrogenic gene expression in the liver, yet does not induce liver fibrosis per se."

What the shit does this mean.

Well it means that cigarette smoking doesn't cause the fibrosis, but it can help fibrosis along if it already exists. So while i do not advocate smoking, and encourage quitting ASAP...

If you aren't cirrhotic( AKA are at F0 coming up on F1) you can slowly ease off smoking and it won't have much impact as if you were to cut it off cold turkey.

The F0-4(6 in some countries) indicates the level of liver fibrosis/cirrhosis in a liver.

F0 .	No fibrosis	You should probably stop smoking.
F1 .	Portal fibrosis without septa (mild)	You need to stop smoking.
F2 .	Portal fibrosis with rare septa (moderate)	If you haven't already, stop smoking, as you're now hindering your liver, and will result in faster liver damage.
F3 .	Numerous septa without cirrhosis (severe)	Don't smoke. see that shit up there^^ it's worse down here.
F4 .	Cirrhosis.	Don't smoke, risk not getting a transplant, smoking and alcohol can decrease your likelihood of getting a liver in time.

Additionally, as cigarette smoking is not typically accounted for in FDA approval(On page 5 are drug interactions for Harvoni) for liver RXs, there is no telling what odd side effects you may encounter.

ASIDE:
If you've recently had a physical, blood work, or check up, i recommend this handy chart. (Usually blood work has normal ranges written in, but if you ever want clarification.)

Why would it's title be damask? because it's smokin'

At first i was afraid,

Over each of the various treatments I've been on, every so often the subject of willpower comes up.  Many are impressed by a never-say-die attitude. But to me, survival is only so impressive.

The inner-strength, Willpower, is an amazing force and I've come to find that there are two main manifestations.

The unyielding force that protects, and keeps you going, is resistance. It is defensive, for me, it has helped me ignore any other option but the next treatment, and getting cured. I resist the temptations that have come in front of me, that may cause my liver damage. In college, many options came before me. And for me, there is no morality regarding alcohol, drugs or anything else of that nature, there is only my mortality. How many years of my life, is that drink worth? How long can I tolerate this before I need whatever pain med they'll give me?

(There are certain pain meds which aren't as impactful on the liver. Here's a good breakdown of NSAIDs Opiates and OTCs, but there isn't exactly a standard in practice, so not every nurse understands the degree of liver damage/how much a patient may be able to tolerate a pain med. A few years ago I reframed what I told nurses: I have  HCV, my liver is decomp, and I refuse morphine, please advise on pain meds with less hepatic impact.)

I have spent so much energy on resistance, that I've lost a lot of the other very similar manifestation.

Persistence, the ability to force that willpower on the world, to keep moving forward similarly unrelenting like resistance, but in offensive stance. It is the drive, the motivation that feeds the need to be bigger than ones' self. I am finding my fuel for this, in taking the experience and understanding of other's I've gained through the introspection of treatment and its subsequent failure. In a way taking to my personal shortcomings and applying that same attitude. Much like in treatment, it is the slow grading process of constant trial that has given me more value for the goal. If I am to run, I should walk first, if am to walk, I should crawl first, and if I am to get off my ass I should probably get up first.

The two manifestations are methodically the same, but used for different purposes. When fear or doubt begins to could my vision, I find strength in review of my last choices. But rather than focus on what could I have done, I break down what I did, and turn my attention to the notion that given I've made these choices, how will each impact my future. It's part of the process of introspection that pushed me forward through treatment, and helps illuminate the path I wish to take. The light of hope and confidence does wonders to dispel fear and doubt.