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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!

Tuesday, October 15, 2013

Tick Tock

The beauty of the mindset you take when you live between the seconds is that you find value in such small things.
My doctor told me a while ago that I could go off the propranolol, but as jaundice shows more and more I’m cautious to stop completely. Every time I feel my throat tightening, there is a little sense of panic in my mind. Even if I've just got a sore throat or haven't had enough water that day... the memories are so vivid so etched into every facet of my being that I can't shake it. So I guzzle down water and take everything I can to ensure the sore throat goes away, but being careful to balance what I take so as not to further damage my liver. It's a thin wire I walk upon; the idea of decompensating just doesn't have the same buzz it used to.

and now back to my original thought… 

Today I was sick, some stupid nonsense I got from Papa G and Easy Mac...  Those are friends, not food. Also not fish. I took everything I could, but my mind was more in shambles than anything else. It's like when you think about the emptiness, the void the nothing that can exist, how small our plights are, that futility. You get trapped in the spiral, and for me, when I’m sick it exacerbates the issue. So in my zombie like state between naps I cleaned, and cleaned and cleaned. Because the principle of setting my mind right, setting my frame of the world in order is a process. Start with a step in the right direction, so I organized and I restructured, reorganized and I cleaned, and when I finished I saw that sense of accomplishment, that something small sets the level and brought back the focus to put my frame back in perspective. 

That yes, small as these actions are they are my actions, my slow, insignificant attempt to remind the universe that I will set the pace for how I do things. That I have my objectives in mind and hurdles be damned... I will live with joy and hope, in those seconds, those beautiful irrelevant tiny fractions... for the beauty is in their brevity.

On another positive note signups for next year's Liver Life Walk start soon, if memory serves me correctly it will be next month some time. Please keep an eye out for my posts to sign up/donate or just send overall words of encouragement.

2014: We will have matching shirts this time, everyone else looked super cool, and I was just lost.
Also because I dressed up as Waldo.
Also we actually got lost.
Also baby giraffes... are... hilarious.

Sunday, October 6, 2013


I should imagine that it's time for a bit of an update.

The Liver life walk (at the zoo) was an amazing success, we raised over eight hundred dollars, and really the walk was more of a.. OH LOOK BABY ANIMALS, because damn they're cute, and we had very little idea where the actual course was. There was a lot of fanfare and fun to be had, but damn was it disorganized. We're doing it again this year, i'll post up sign ups in December/January.

It's been a while since i last put an entry in here, with the failure of my last treatment i learned a lot.
1. How much i hate insurance companies who don't understand their own policies.
2. How hospital accounting departments seem to just bill first and ask questions later, end even report you to a credit agency.
3. biggest of all... how finding that critical treatment when you've been banned from the "cure" because if you take it, you die.

The treatment works, but i'm too far gone for it to work on me, so now i wait for a non-inject-able.

Hmm... how best to put this...

LAST TIME ON, THE ADVENTURES OF BONHOMME... With the failure of the ribivian/interferon/incivek triple cocktail in play, our hero was barred from trying this final cocktail due to an unfortunate side effect of advanced liver cirrhosis: Esophageal Varices. The stress from the treatment helped worsen the conditions to allow for several bursts causing massive internal bleeding and a lovely near death experience. As the doctors would later conclude, this treatment is too dangerous given our hero's present state. Banned from the treatment and hopes dwindling new potential FDA approvals glistened on the horizon... but will they arrive in time.

Turns out the answer is no, our FDA has a very...very....very...long screening process. note, i didn't say thorough, i said long. While sometimes it is, in many cases political pressure prevents certain drugs from hitting the market when they should because one company wants to corner the market or push a different drug that makes more money.

Shitty? yes, but hey they keep making cures, so it's not all bad.

Essentially the treatment i'm waiting for is under approval, and it's in limbo thanks to a lovely government shut down... Now for where it gets...well... ridiculous.

There is a form of hemodialysis that is so refined it can purge the virus. woohoo! great news! wait a second... lets look a little closer shall we? it turns out this particular form is not FDA approved, and most hepatoligists won't back it, mostly because of that. The company doing the procedure has been operating for a few years now, with great success, however getting over here is proving...challenging. Luckily their top notch facility is located in a rather unusual and fantastic place... India.

The  hemodialysis will take two to three weeks and it will be one of the most painful experiences in my life as they slowly filter....all of my blood. Good thing it's only like ten grand sans airfare, and it's all out of pocket. It will put me in the best condition to start treatment, as i'll begin it with a nearly zero count.

So i just have to take this trip before i begin my full treatment, once FDA passes that of course...but with the government shut down, the treatment may get postponed further, which makes planning this trip harder. Now throw in the next wrench, I'm on a transplant clock. When i hit twenty nine, it will be time for a transplant, in hopes they give me a decent sized healthy liver (if need be) the treatment options will begin to get even thinner.

If all goes as planned i'll be able to take the trip this Christmas, taking minimal time off work, and then start up treatment around the end of January when we have more holidays so that i don't miss much work. Thankfully my new job is less stressful, and more flexible. (not to mention it's what i love to do, and couldn't be happier.) I've got a compassionate boss who gives me all the tools i need to succeed, and amazing staff that are like a well oiled machine.

If this works, i'll be clear around July of next year, meaning that i'll be able to have a drink on my 28th birthday, but i won't be able to really know until around my 29th birthday. Because they want to make sure a patient is clear for a year with no signs of remission.

NEW SYMPTOM: of all this lovely experimentation and liver failure...muscle cramps. I'm not talking lil cramps, my hands, and limbs will lock in place if i don't move around enough, and even then the cramps turn to multiple hour long charlie horses.... Soooo what's the solution? apparently all they can give me is a muscle relaxant. There is one tiny problem with the vast majority of muscle relaxants: they're processed through the liver, which means it's a band-aid on a gaping wound.

Sooo what am i doing about it? Eating healthy, stretching and working out every day. I've now got a host of vitamins, supplements, and interesting food choices that all assist my liver's function. I'm going to go back on a real fitness/health regimen to ensure that i'm in top notch shape for this.

because it's literally the fight for my life.

I've decided i can't keep waiting for all the pieces to this puzzle of life, i take from the Ray Bradbury's borrowed words given to me by another Lifer, "...Jump off cliffs and build your wings on the way down."

The messaged echoed this past weekend at a John Mayer concert, You can't keep waiting for the right pen to start writing, you need to just write...you find yourself waiting for the guitar, or the protools, you just need to play, and just do.

A slight irony from the artist who wrote "Waiting on the world to change" but it was the growth from that he was talking about.

So here i fall, into madness, into darkness, into hope.