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This is a story detailing my battle with Liver Disease and the events the got me here. It is a story of hope and determination and inspiration.

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Saturday, July 2, 2011

Interferon, Interference, Interfere, Inner Fear

Interferon, Interference, Interfere, Inner Fear,
June 2011
Definition of AGUE
1: a fever (as malaria) marked by paroxysms of chills, fever, and sweating
    that recur at regular intervals
2: a fit of shivering

After a short wait of watching the comings and goings of other patients, my wife and I are finally called back to a small room by Nurse K. She has a bunch of letters behind her name and I don’t really know what mean or really care.  Apparently they have something to do with her specialty, hepatolgoy and specifically the treatment of Hep C.

Nurse  K’s office is not much more than a windowless cubicle, it has no personal belongs, no post cards from the Cape, no Red Sox, Bruins or Patriots bric-a-brac, no picture of a boyfriend or dog, no sloppily scrawled drawing from a niece or nephew. No diplomas or certifications adorn these walls, only a small poster demonstrating the different levels of pain with smiley to frown faces from the numbers one to ten. There are two chairs and a half-length examination table with a roll of schrunchy white paper over it, this of course is where I get to sit. Aptly, it is a very sterile environment - perhaps the reason I’m here is sucking the warmth out of the room, or perhaps it is intentional design.
Nurse K is very undemonstrative, with a slight automated smile and steel blue eyes, sort of pretty and cool. But not cool as in hip, cool as in chilly, like the nondescript examination room we’re in. We sit there as Nurse K talks about a new “protocol.” Protocol is a term medical folks like to use instead of saying, “Before we make you better we have to make you completely miserable.” It’s not their fault - sometimes before you bounce back, you have to hit rock bottom. Unfortunately it’s painful.
Nurse K talks about this new and improved treatment of interferon which is traditionally a combination of pegylated-interferon and ribavirin; two antiviral drugs; one releasing interferon proteins and the other interfering with viral replication. The new addition to the cocktail is called telaprevir, yet another antiviral drug which inhibits the hep c virus.  I don’t understand the medicine behind it; I just hope and pray it works.
It’s a balancing act, a multiple pronged attack. Two things need to happen, I need to get cured of Hep C and I need a new liver. One can happen without the other, but if both happen, that’d be super awesome. It is strange to me that I have two teams of docs, one pushing for the Hep C cure first and the other pushing for the transplant. It’s confusing and scary and having gone down that interferon road before, I’m not looking forward to another trip; it was blurry, painful and dreamlike. I didn’t feel like myself when I was on it. It is a hard pill to swallow, well; not literally -  it’s a pre-dosed syringe that you have to shoot into a muscle. They suggest your leg, but you need to move the shot around your body because one of the side effects is the development of rashes.
The first time I took my cocktail I locked myself in the employee bathroom inside the Lenox Hotel. It was a one person bathroom, so I had privacy. I pulled my gear out, sterilized the infection point, loaded the needle, stuck it in and pushed the plunger down. How reminiscent of another time, a long time ago, doing the same thing, only different, and possibly the cause of my illness. It is nearly a déjà vu experience, years and years apart. I wondered if I was the only Hep C patient who had ever had this sensation.
Nothing happens at first; the medicine needs time to get absorbed into your system. I’m able to go back into the kitchen, stand on the line and expedite, at least pretend to while a sous chef helps me stay focused. Tickets come in, orders get called, my head spins a little bit and the words on the paper fade in and out. I feel a wee bit nauseated.
I take a break and sit in my office, looking around at the collection of cook books, terrine molds, assorted knives and specialty tools. I feel at home among this stuff. A recipe for some magazine I’m working on looks at me from the computer screen. Partially used bottles of booze, wine, specialty oils and vinegars sit on the shelves along with a half used tin of saffron and a small sample box of bar snacks. A half-eaten dinner special one of my Sous Chefs wanted me to try sits on a plate. I love being a Chef and hope this treatment doesn’t affect my value to my team and restaurant. Shortly, my body starts to ache a little, my head pounds a little more, I get dizzy and my stomach starts to spasm and quiver. I can feel an eruption starting to brew in my belly. A couple of gags and I quickly reach down, pick up my unlined trash can and puke in it. I puke some more, I dry heave, I dry heave until my abs hurt and I can taste the bile and acids coming up from my stomach. The sounds coming from me are reminiscent of the sounds from a wildebeest dying on the African Savannah; I’m shocked no one has heard me.  My body lurches and rolls into the trash can as it climbs to a crescendo of jerking, coughing and gasping. In time the nausea subsides; my nose is bleeding a little - did I hit my head, is it part of the protocol? I gasp, catch my breath, wipe my mouth and think, okay, time to go home.
In the car I realize I only have to do this another 48 times, or so.

3 comments:

  1. I had no idea you were in this position. What stage are you at?- you weren't the only one to have that feeling...I remember it almost exactly the same way, that what I did then was why I was doing the shot now...clear as a bell. The waves of nausea were from odors though, the cocktail made my sense of smell so super sensitive that just a simple unflushed toilet with one round of pee in it was enough to send me yakking & gagging & puking.
    I'm sure you're on to this already, or your doctors are, my sister works here: http://www.vrtx.com/ and less than a month ago I heard their new Hep C Drug was approved http://en.wikipedia.org/wiki/Telaprevir
    Call me anytime man...your friend , Steven

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  2. Hang in in there :)

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  3. Howdy,
    I was just thinking about you and our times at the Donut Stop tonight...
    thanks for sharing. lemme know if there is anything i can do to help
    love
    geo

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