About Me

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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Monday, December 28, 2015

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.

Friday, December 18, 2015

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.

Sunday, December 6, 2015

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.