About Me

My photo
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, January 29, 2015

Shake lightly, but do not shake.

(Since it'll be about two weeks until i know more about my viral load, let's continue with come character development.)

My mom failed the first treatment, she had begun her second fight with interferon. Peg- interferon was a welcome change to the predecessor, less injections and a better control of the drugs meant for more promising results. My mom's numbers fluctuated dropping low but never hitting zero. Perhaps I was too excited at the thought of being free of the damning state of mind I'd been in, the idea of freeing both myself and my mom of this was amazing and I jumped at the chance. a small battery of tests gave me the first month's set of drugs. it was delivered on ice and the needles we're the most confusing things I'd ever seen. Instead of prefilled syringes the drug came in a container that was a cross between a Rubik's cube and an epi-pen.

This is what it used to look like:

While this is what it looks like now:

(and now with the all oral treatments? Sovaldi, viekira pak, Harvoni? it's just amazing.)

It may not look intimidating, but the instructions looked like that notification from the department of labor in your common space at work.
After a certain degree of shaking lightly or something to that effect, rotating it a certain number of times, and then putting it at a 180 degree angle, you would compress it until the bubble hit the line and magic would happen. My memory denies me the intricacies of the procedure, but It was a rather absurdly elaborate process which simply added more stress to impeding injection.
The treatment's potential success brought me a lot of hope, something I'd been lacking. unfortunately it's failure would only compound my mother's guilt. As the symptoms of a worsening liver coupled with the weird hormone changes I'd felt during treatment began to inhibit my routines I noticed my mom's decay. To me she was a mirror into the future, and it wasn't looking good.

This, I'd realized, was the hard part of having someone walk along the path with you. while we both understood the pains, the frustration, the depression, it was a double edged sword. Being a vertical transfer meant that I had someone to share this wretched journey with, but it also meant that when both of just were injured on the trail, hope would fade that much more.  This is where fear lives. Feeling alone, but knowing you're not. My mother clung to hope, and had a hard time pushing herself. I felt differently. I refused to let go of the hope I'd gained, I pushed myself harder and tried to live as normal as I could. When my mom was floundering I'd remind her that we were in the same boat. My methods involved a lot of yelling when conversations regarding progress would sour. It took another treatment to brighten her spirit. It was by far the hardest on her putting her at near zero for month, and she pushed through it refusing to give up. That same treatment decided to give me a slightly different experience, it brought me close to zero, and then nearly killed me.

At the end of the year HepC still remained in my system. And while my mom managed to cure herself, the other half of her pain, would find some solace in helping me fight my ever worsening state. It is with that sentiment I take on each treatment as much for her, as I do myself. Because the path that we've stumbled along has brought us better to fall together than to fall apart.

Friday, January 23, 2015

Hoops and Ladders.

A few weeks ago I wrote a multi-blog entry regarding Covered California, and essentially singing its praises.
I was about to post it, along with its partners...until something weird happened.
I was suddenly without health insurance, apparently it had been the case for a few weeks, unbeknownst to me.

The reason for it was that this is the first time Covered California did a year change over, and since the plans changed instead of rolling over to a similar one it encourages you to sign up for a new one. You can roll it all into a new plan however in my case it required me to reset a lot of information.

Covered California isn't perfect, it's a work in progress and it's one that faces a lot of political opposition. When that happens it's often the case that once passage of the program becomes imminent the opposing party drills holes in the boat. It's not a new strategy and it's present in programs on both sides of the political fence.

Regardless of all of this, the reality of being caught in this tug of war with thousands of dollars at stake in a given week, just isn't something that jives well with me.

This is the gist of the my experience with healthcare under the Affordable Care Act:

My total cost last year alone was over $880,000
My Medicaid alternative cost would have been around 450,000
(As I wouldn't have qualified for treatment and required a transplant, I would however be starting treatment in 2015.)

Because of the ACA (Obamacare) and Mysupportpath
My medical costs were around $8,000
and I was able to take both treatments.

Sovaldi/Olysio AND (at least start) Harvoni.

I may choose to post the full detail as wrote it, as it also illustrated the dangers of medical-related debt, but presently that kind of healthcare gap scenario could have been disastrous.
That being said, I've been gone for a month or so.

Why? Because we're in that part of my story where it's a slow build to something interesting. Like any good story, it's been a month of the same frustrating pains rearing their heads. Mostly correcting my balance of nutrients and diet to ensure the least pain with the most energy.

My blood draws leave longer lasting bruises, and keep telling more promising information. But at the end of the month I'll know if this treatment has been working. Because yes my bilirubin is at its lowest, my INR however is still not where it should be, my ALT, AST, and other ridiculous acronyms are improving. But that big number, my viral load... I'll know it in a few weeks time.

It's that part of the story, the slow part, the part where maybe I tell you a story about how the disease affected me psychologically before it began to really slow me down when I turned 19.

Shit, I've already talked quite a bit so far, so maybe I'll just split it into two stories.

As I've discussed before I'm not the everyday case for HepC. I'm not even extreme, really, just out of the ordinary. I am a vertical transfer which means my mom had the virus and gave it to me at birth. In return she found herself with an unbearable guilt.

She went through rough and cutting edge treatments and in between them fought with a depression that comes from the reality of our situation. Every painful step she'd take would be a gift from her to me. Whether she realized it or not. This all occurred when I was in high school until shortly after I graduated. I had little to motivate me; living in the short term, I constantly went against the grain barely graduating high school. Due to a combination of being kicked out of classes and refusing to abide by the rules as I felt there was no consequence they could give me which was worse than the reality. College changed my mentality, as did my first encounter with treatment.

(This is the back-story chapter about vertical transfer, and how my mother and my relationship with treatment affected our perspectives.)