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.
