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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!

Thursday, June 5, 2014

It’s been…. one week

Woohoo! Only 23 more to go!  I have yet to perfectly balance all these meds and diet, but I’ll get there. IT’s harder predicting my energy levels, I’ll have random sudden bursts of energy that put me to a normal level, and then moments later come back to being exhausted. While generally I can tell when I’m most affected, it now appears more moot than I originally presupposed. One major truth remain, my muscles get tired a lot easier.

On the bright side, I have a blood draw and GI appointment this Friday, so we could see how quickly this drug is working. I intended to attempt a road trip up to San Francisco to see some good friends I haven’t seen a while, and visit my girlfriend but I quickly realized two factors that would make this impossible upon starting treatment. The first was that realistically I don’t have the option/freedom of traveling alone nor could I last more than 2 hours in a car without needing to nap for a break and restroom.

There is a mental fog I didn’t really notice until recently, it makes things more confusing. I have a hard time dealing with obstacles properly. I have a shorter fuse, partly because I’m overwhelmed by my senses, and partly because of that fog. It’s frustrating because there’s little I can do.

But in time I’m certain I’ll find a way around it, I’ve got good friends who understand and make this easier.

Quarter million dollar RX combo

I recently wrote a summarized version of “My Hep Story” that I submitted to HepMag.com. This is a very consumable summary of my family’s battle with this illness:

The italicized was omitted from the submission

It was summer time, and I was going into seventh grade. After a day of playing tennis and drinking sugary drinks I went home to make a discovery I had not thought possible. Sprinting to the bathroom, I had little for warning of what was in store. As the “iced tea” colored toilet bowl filled I understood that this wasn't normal, my dad told me we’d need to get that checked out.  Fast forward: some new doctors, some new tests, was it his kidney? No, his spleen? No, his liver? Yes, what did the biopsy say? None of us really knew what to expect when we met with the doctor that day.  Little was known about HCV among generalist doctors at the time, and the information he explained was minimal. The room went quiet as my parents probed him, “…at his rate, it isn’t unlikely that transplant at age 30 will be a reality for him if he doesn't clear the virus. And even then he’ll re-infect the new liver.”

Sports were gone; my physical activity spurned the event, so I was put to a system where I could not over exert myself. But this isn't just about me, because I know how I got the virus. The doctor asked my family for blood tests, and within a week he called us in. My dad? No, my brother? No, my mom? My mother’s hands fell to her face as she was told the news, we were the same genotype. I am a vertical transfer. Within months her optimism would later sew the same brightness within me, but not today. My mother would go on two treatments while I was in school. Each treatment put a glimpse into the insane side effects and pain from non-peg interferon into my reality. This wasn't just my mother’s pain, it was to be mine.

As years passed, I too began treatment. At eighteen, people weren’t prepared to see my face, I stood out like a sore thumb in a GI so filled with geriatrics that they called sixty year olds, whippersnappers. My first treatment took months to get going, and it took about as much time for them to give me my first new HCV label: Non-responder. The treatment wasn't just tough; it dug at my fiancé’, my friends, and my job. It was my own personal hell, each month the results teetered around the three million (viral load) level. The failure of my treatment was hard on me, coupled with the ending of my engagement and the news that I would need another semester at school, I lost myself.

One of the biggest things that helped me refocus was my group, at the site where i worked at the time, they were some of the strongest personalities and rather chaotic group of kids. Helping them, watching them improve over the few months before their promotion was one of the most gratifying things i'd felt in a while, Seeing how, in spite of all their arguing and rather bizarre antics, they worked together. Their compassion for one another inspired me, alongside their struggles and accomplishments to this day have been one of the single biggest factors in what drives my passion for working with children. but at the time, it helped me find myself.

I refocused, began eating healthier, working out more, and within the next year, a new job. After two years, another treatment would reinforce my title as a non-responder. Internal bleeding and new symptoms began to illustrate my decaying liver. Just as I had done before I refocused, my next job was accommodating to my situation for a corporate job, and as I started it I saw my mom go through the roughest treatment yet: the triple cocktail (Peg/Riba/Incivek.) Two transfusions would keep her going as she zero’d out and was cured. I was elated, not only because my mother was clear of the virus, but because it meant that I would have a path myself. I prepared for months ahead of time; With the help of a dear friend, I was in the best shape I’d ever been in. Within a month I shot from over 9,000,000 to just 220. I felt like I was dying, but the results were fantastic. The next nine weeks would keep me at less than forty, and as the veins in my throat burst, not only would I lose a third of my blood within a few hours, but any hope of continuing that treatment.

Last year the symptoms began interfering with my brain; encephalopathy, ascites, jaundice, my esophageal varicies and portal hypertension had new company. As my MELD went up, a new treatment needed to happen soon.

If I am anything, it is persistent, I have recently begun my fourth treatment. During my last treatment I began a blog of it, keeping my friends and family informed, and hoping that it will help those who are going through similar troubles. I hope my story here inspires and helps others.

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