Edges and Pills

As 2016 began I was excited to be defining my timeline for treatment soon. However, my early morning appointment with the doc turned out to be less exciting. She answered my questions as best she could however the FDA had yet to release that information: Zepatier is still waiting.

In Canada, the drug was recently approved. This by no means necessarily speaks to any superior efficacy, merely different timelines and different standards. (California has three million more citizens than Canada, smaller governments can act faster.)

Normally we would proceed with an off label prescription, however Zepatier is a new drug not a new combo of drugs.

Sometimes with Hep C (HCV) meds combination uses are FDA recommended. If they're not, then it can be harder to get them approved from an insurance company. In 2014 Sovaldi and Olysio were approved separately, however their use to treat HCV as a combination took an additional set of studies which was approved later. I took the combo two months prior to its FDA approval because of the 'off label' option.

In the case of Zepatier it has not been approved and since it is not a combo therapy it cannot be prescribed 'off label'. I can hope for a trial while I wait, but other than that I really have no options yet.

Treatment is part of what I need to do to get healthy. Treatment can cure me but it can't heal me, the exhaustive damage to my liver I've already sustained is enough to very nearly kill me. My liver doesn't have long, maybe a year or two if I'm lucky. So treatment is really only part of what I have to do to survive this.

This is an outline of the major sectors I'll be focusing on as I go through treatment:
Nutrition- Low Sodium, High protein diet with liver friendly foods.
Exercise- 1-2 hours per day 1/2 cardio, tone down existing program: P90X.


P90x is workout regimen for those already in shape. I have spent the last 3 months doing a combination of low impact work-outs and walking (at first only about a mile a day, but now near three months later I average 5 miles per day.) Even though I'm better off than I was a few months ago, doing P90X is no cakewalk. It is an intense as you need it to be, which is why I like it.


Social- Connect deeper with friends by learning more about them.
Emotional- Talk to others about experiences, and complete goals.

As I implement these changes in my life I will be logging my physical and emotional state during treatment.

The doctor's visit was not without good news however, as my MRI results are fine: thankfully no cancer. Most everything else seems to be in good health, which is always relieving to hear.

With no knowledge of when I start treatment, it's going to make dating with Hep C that much more complicated.
Wait, what? Dating? What about health, treatment and focusing on all of that....

Yea, Dating. I'm 29, so it's part of my life and one I shouldn't ignore. I've learned from the emotional stress and depression of my prior treatments.

It's important to keep close the people and things that make us feel alive.

What composes us makes us wonderful but definition is found at the edges, in differences and limitations. Edges are the best place to build, it may require a little more balance but to expand the horizon is something uniquely human.

2016

New years is coming. 

Stay Positive.

Just not HCV positive.

This year I will take my speckled axe and embrace the negative space.

I wish you all a glorious new year.

Hepatitis C you next year.


Images below used for blogs:

But, Why is it purple?

     I woke up to notice an unusual cough and a foul taste in my mouth. I proceeded to walk myself to the bathroom where upon I discovered a color I didn't think could come from a person. The alarming color I saw was a dark purple with chunks of all different types of foods that I'd eaten all day. I presume that it was possible that it may have been something that I ate, so I proceeded to go through all the different foods that I'd eaten that day in my head. Whatever the potential culprit was, I slowly drank some water and sat upright as I awaited the next round. I was aware that this was not finished.

     The color, the smell, the taste, everything about it seemed unusual. And at 4 AM this is something I needed to keep an eye on. As the morning crept forward I would again find myself face to face with a porcelain halo. I proceeded to dump even more of a purple - now what appeared to be dark red into the bowl. At this point I was certain somewhere inside me... I was bleeding. I have tasted blood that'd been drying in my stomach before I have tasted fresh blood from the back of my throat but this taste this chemical popcorn taste was unlike anything ever that I had willingly consumed. From there I cleaned myself up yet again and sat on my bed waiting for one last thing to make sure. The curious thing about an internal bleed in your GI tract is that there are two areas you can watch: your mouth and your butt so now I was merely waiting for the moment to pass so to speak. Upon inspection I found absolutely nothing unusual, and it was at this point I proceeded to make some phone calls and be on my way to ER.

     While waiting for my dad I sat upon the steps to my home. The cool breeze coming up from the canyon, my arm gently resting on the handrail so that if something may happen perhaps I may lean on it for support. My stomach burning from the inside out and a plastic bag in my hand. Prepared for the worst, a towel over my shoulder waited to clean up any unwanted messes. After a moment I was on my way. There was nothing unusual about the ride except for me vomiting along the way. Thankfully, I had my plastic bag! When we arrived to the ER I handed it off to my father, he proceeded to attempt to give it to the ER nurse which was entertaining to say the least. The next part is a touch hazy as within perhaps an hour of my stay in the ER I was under mild sedation. A 20 gauge needle in my hand was a sobering reminder of the potential impending problems. (A needle gauge between 18-22, is used in case of blood transfusion)

            Thankfully my nursing staff was quick and very accommodating throughout the entire process. It was smooth and easy, it's one of the things I prefer about Sharp Healthcare. My nurses were fantastic and made the entire experience significantly more bearable.

       While in the ER I proceeded to vomit a few more times before they rolled me upstairs to the ICU. Most nurses are kind of confused when they first see me on the ICU floor because typically speaking to someone on the ICU well ummm...is practically dead. There are number of reasons why the ICU is typically where I end up going, one of them has to do with conscious sedation and the other with the fact that my status may change within a moment. When the new doctor came in prior to the procedure to introduce himself we went over the basics of the procedure's complications, and a little bit of my own patient history. He was very surprised at both the number of treatments I've failed, my outstanding health otherwise and my age. Saying " I'm not going to lie, you are very unlucky."


   

The procedure kept getting pushed back, so hours went by where I refused pain meds because of the impending fentanyl required to scope me. So when he came in and said "Long time no see." Well, I couldn't help but respond a lil sassy as i said "Yup." I'm not certain exactly what happened after that because at this point everything kind of gets really fuzzy. Fentanyl will do that to you. The procedure I had was unlike my typical endoscopy. This was something a little bit deeper it's called a gastroendoduandoscopy.
If you thinking to yourself what the fuck is that? Then perfect we're on the same page. Let's break it down...
Gastro: Stomach
Endo: Esophagus
Duadno: Duodenum (it's an area after the stomach, prior to the intestines)
-oscopy: inspection by scope.


      After the procedure in my state of delirium I was greeted by my friends. I apparently was quick to adorn myself with the title "Two Socks" and co-opted them into my newly formed band.

My surgical team, doctors and nurses were on point. My GI doc did a fantastic procedure and didn't bruise my lips. (If you go in for an endoscopy, wear Chapstick, you're basically gonna make out with Legos for ten minutes.)

The scope revealed no real threatening abnormalities.

The bleed had been caused by irritation and some scraping in my stomach.

I have little recollection what happened after the procedure, I remember flashes of a car ride, constant requests by me for Tajima Ramen, and suddenly being home.

While there was no major issue (unless you count the lack of Tajima Ramen), the entire debacle was exhausting to say the least.

I'll have a follow up in a few weeks, from there we'll determine when treatment should occur.

I'm going to use this whole shitty experience to highlight one incredibly valuable lesson I've learned to value greatly. 

Besides my HCV, I am healthy and fit. It's paramount that when you live with any disease you must mitigate comorbidity (multiple diseases/medical issues) by minimizing your risks. Physical and mental fitness are your friends :)

This wasn't a cake-walk getting to this point, it's hard and it's a little maddening and it took months. Every day, every moment is its own unique struggle. I look at one hurdle, isolate it, and take it down at my leisure. My first three weeks were a constant struggle as I combated the daily one to two hour muscle spasms. But once I built up the muscle and began to better fight my atrophy, it slowly became easier. I would vomit once a week from simpler work outs... my point is that it's not easy, but do it anyway, find what works for you and....

Start.

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/