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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, October 23, 2014

B Frank

For the past month, I haven't really posted much of anything.

I've been absent. I do not merely mean online.

Learning from failure, isn't about bouncing back and immediately getting back on the horse. It's about taking a deep breath, a look around, and occasionally a look forward.

After my release from the hospital last month, I have routine blood work done each week to watch my bilirubin. My new yellow skin and eyes have presented me with new difficulties, not only socially but also in regards to my next treatment.
The trouble with a high bilirubin count is the correlation with my high INR, (a low INR indicates a clotting risk, whereas a high INR indicates a bleeding risk) once my bilirubin and INR stabilize, I should be ready for treatment.

In the meantime, I've been reorganizing my life in every way I can: my home, my routine, my goals, everything.
It's depressing, it's rewarding, and it's physically taxing. But to ignore my sadness would be to ignore a part of my humanity, I must look upon my efforts and remember that sometimes "a speckled axe is best." The idea that within the realm of struggle, our humanity is sometimes derived not from our success or failure but rather from a perspective of acceptance that perfection is not always worth the effort. And that to truly understand one another, we must from time to time produce a speckled axe.

I cannot focus on what could have gone wrong, but rather, enjoy what I did gain from my treatment. I saw my friends and family rally behind me like never before. I joined more online communities, and sought to carve the word "Advocate" beside my name.  I zeroed out for the first time during treatment.
So with timid steps I walk closer to a new treatment, carefully keeping an eye on my slowly fading yellow skin.

In the spirit of the upcoming Halloween I leave you with the words of the pumpkin king:
        Why does nothing ever turn out like it should?
        Well, what the heck! I went and did my best!
        And, by God, I really tasted something swell!

        And for a moment, why, I even touched the sky!
        And at least I left some stories they can tell, I did!

Thursday, October 2, 2014

Hepatitis C you later.

The whole hospital stay brought all kinds of news, and processing it took quite some time.

My bilirubin shooting up to 18 out of nowhere was bizarre. There had to be a cause, did something go wrong during treatment? Did I acquire some new liver problem? The answer was clear, but I really didn't want to hear it.

I'd failed three treatments, I intended on emblazoning a IV on my arm in ink for my 30th birthday. I'd never gotten a zero before, let alone zeroed to the end of treatment. It felt like for a moment, I touched the sky.

The HCV Quant/Viral Load blood work had been done and the reality that the IV I'd hoped for, fell to pieces. I failed four treatments.

I informed my family and a few people, it wasn't something I was ready to talk at length about, but it was something they needed to know.

It turns out the climax I had been hoping for, became a plot twist. When my GI called to tell me my bili count of 28, we spoke briefly about the prospect of future treatment. a new one is to be released in October, and we're looking into whether it's feasible or not.

But future aside, I had my present to deal with. This kind of news is something you need to wear. Something you can’t bottle inside, or it will fester. I transferred my rage into focusing on bettering myself, being in peak physical condition once again prior to the next treatment is my goal. Because I want to make sure that my body won't give this virus an inch in wiggle room.

With my girlfriend's help I cleaned my car to clear my mind. It was a step in the right direction. It was something I could impact and see my own growth and success. To remind myself that failure is more than losing. Failure has always given me a plank to stand on while I figure out my balance. Because in order to have failed, I tried, and to have tried, I braved the possibilities. It took courage to start this, not because of the success, but because of the failure. The possibility of failure is what makes something great . I've learned that doing something where the direct impact is measurable, visible, and helpful to others helps returns me to a calm state of being.

I also realized that nothing motivates me like failure does. As I cannot speak to what I would do if cured, I can speak to what I must do now that I've failed. With my new count of 1.9 million, I look forward to the future. While it is not how I would like things to be, I must and will become more than I am. In doing so, I stand a chance against this virus, psychologically and emotionally, which often is half of this battle.

While failure may be a theme, this movie of my life just got a lot more intense.

And I don't know about you, but I'm sitting on the edge of my seat waiting for the next news from the doc.

Wednesday, October 1, 2014

I'll have the bilirubin, hold the sauce, extra corned beef.

Hospitals never did instill confidence in me, as my complicated history with them would support. When I was 18, a hospital released me after a biopsy. I noted a pain in my shoulder as I left but they told me it was just from some small issue. Three days later the pain grew so intense it brought me back to the hospital, where they discovered that they'd nicked my hepatic artery during the biopsy and I was bleeding internally. I had to spend three more days in the hospital while they corrected their mistake.

The walk around the garden in my most recent visit brought a lot for me to think about. I reasoned to myself that the months in the hospital would be well spent as it would allow me to wait for a transplant and give me some years more of life. After the fourth day, my release was contingent on my bilirubin counts going down, since my other metrics were where they should be. The docs were puzzled to the cause of the rapid increase in bilirubin; it clearly started well enough before I contracted C. Diff. I watched my counts go steadily up each day, by Wednesday I was at 29.9. I was ready for a downward trend.

To combat my growing rage and frustration, I asked if I could walk outside more often. My cabin fever was setting in. With the assistance of a volunteer I was able to wander around outside under the hot sun. It felt invigorating, I soaked up as much sun as twenty minutes would allow. It would be a daily task I would seek out to put me in better spirits.

The trip had been made more comfortable by a dozen friends dropping by with stuffed animals. They each hung out with me for hours, some visiting several times. It warmed my heart to see my friends and family, and I thank them so much for being there at my side. My parents were on vacation when I came into the ER, but when they heard about my hospitalization they took the first flight out. By day four my mom was there every morning waiting for good news. On the seventh day, she would have it.

My bilirubin was at 29.1. While not a big downward swing it was still in the right direction. They also gave me another number, the game changing news of my Viral Load (Quant). With all of the metrics in good shape, I left for home. The C. Diff required that I take eight more days of antibiotics, which meant alarms every six hours. Thankfully they had it in pill form, which doesn't have the same foul taste. After I got home, food, sleep, and staying on top of my prescriptions and antibiotics were my biggest priorities.

I announced my freedom subtly on Facebook, it was exciting, but there was something I had to tell all of my friends.