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, November 13, 2014

Six months and a quarter million dollars

With my last trip to the hospital I wasn't really sure how quickly I'd be able to start up my fifth treatment.  Interestingly, the time I've waited for my jaundice to subside, and my bilirubin and INR to return to a stable level, was about the time required to approve me for the new treatment.
That's insanely quick. To help with some perspective these are my previous wait times for treatment:

Number 1: Three months for healthcare approval, RX deliveries, and prep, after the treatment had been out for two years.

Number 2: Three months for healthcare approval, RX deliveries after the treatment had been out for near four years.

Number 3: Six months(technically eight months because of the denials/appeals) for healthcare approval, RX deliveries, and prep, after the treatment had been out nearly two years.
Number 4: Seven months for healthcare approval, RX deliveries, and prep( as well as transplant tests) as the treatment had been out for two weeks. (but each aspect had received FDA approval nine months and about a year prior)
Number 5: About a month for healthcare approval, RX deliveries, as the treatment had been out for  about a month.
I'm very lucky to have an amazing GI, Transplant Doc, Advocates, and nursing teams in general.
I also want to be clear: none of this would have been this fast without the healthcare reform that has taken place in the last two years. In just what I've explained above, know that my first three treatments were through healthcare from the companies I worked for, while the last two, hail from healthcare through Covered California.

This blog isn't about politics, and I'm not about to shift in that direction, this blog is about my journey through treatment. I simply wish to extend my thanks to those who have helped bring me here.
Oh yea! I mean, I guess I already said it and kinda ruined the big surprise...but yes! I have been approved for Harvoni and I will start next week. Harvoni is the lovely new treatment recently approved belonging to Gilead, the makers of Sovaldi.
I've had a handful of questions from people regarding the new treatment, so let's go through some FAQ!
Harvoni is a two in one pill, it's a similar to a combination of the treatment I was just on.
But won't that just produce the same result?
No! There are differences in the medication, the two drugs are made in synthesis to work with one another in a single dose.... It's like oil and vinegar, when they're poured in the correct balance they produce a lovely taste, but if the balance is off it doesn't have the same effect. (Technically Ledipasvir and Simeprevir target different nonstructural proteins, Simeprevir targets NS3 and NS4A while Ledipasvir targets NS5A, but at this point we're talking grades of vinegar in terms of comparison.)
Isn't Harvoni really expensive?
Yes, and no. As a single pill, it's very expensive, but it costs less than both Sovaldi and Olysio combine. A really big part of understanding the cost breakdowns of these new treatments is what are they relative to each treatment as a whole, and how they can be administered.  Connie M. Welch did a great breakdown of this on her blog.

How long will you be on it?
I'll be on it for  24 weeks, provided my liver doesn't decompensate during that time.
Average treatment is to range 8-24 weeks, depending upon a whole host of factors.
How did you get it so fast, didn't it just come out?
Yes, it came out in October, and there are a few factors in my favor. The first is that my doctors submitted the approval forms as soon as they were able to. The second is that I've already failed the predecessor( also having just done the requisite tests). And the third, while I have a horribly cirrhotic and nearly useless husk of a liver I'm otherwise healthy and young.

What are the side effects?
Seeing that my liver isn't in great condition, It's roughly the same as before, photo-sensitivity, headaches, fatigue, nausea, dry skin. One of the more unforeseen things is the interactions with my diuretics, so that is sure to be interesting.

Needless to say I'm very excited to start up the new treatment.
This interim month in yellow has helped me put things in perspective and come to terms with my internal conflicts. Reflection after a tragedy is important, I have a much better understanding of a more personal sadness than I ever thought I may encounter. I can't be kept down, be silenced by my own self, so I shall view myself accordingly. After all, The difference between re-silence and resilience is how you see the I inside resilience.

I should be finishing up my treatment during Hepatitis Awareness Month, on May 7th. 

Friday, November 7, 2014


As my bilirubin stabilizes i'll have another update next week. I see my doc today, and if all goes well i'll be well on the way to limbo number 5. How low can it go? Lets break the floor.

In the spirit of waiting, sometimes i have vision, not blind yet, so i wrote a slam.

Hep See.

A general malaise, passing the days, as they slip into a haze, as the days fade one to the other, there was a birthday there, my mother, my father, my brother, too many to keep track, I'll watch my back the counts rise, perspective and realize I'm frozen here, it's not fear it's self mutilation, thanks to a mutation, I won't evolve, can't be solved I drop into small statistics, I'll go ballistic if I can't, a reason to reason reason in this constant change of season. what's the weather like?  What's with the forecast, vials drawn together, never fast,  they ask me how I'm doing, you've got eyes, that's my reply it's painted in gold letter on my goddamn forehead, I'm heavy this shit's like lead.  Another letter in the mail, six months and a million dollars, k? Do I even have a choice?  If I'm weak they're my voice. I'll sit this one out, couldn't stand the doubt, my spirit's lite, my mind adrift, salt of the earth not here, I'm lost at sea practicing the alphabet and I'm stuck after just be.

Saturday, November 1, 2014


There is no better day, than today to start something. 
While, for the most part, I can deal with the struggles of failure, I find sometimes my frustrations leak out in unexpected forms.

They push people away, but ultimately pull them in. While the world around me moves, I observe. It's glass all around me, and the sad part is that I put it there. Allowing others to see my life, to be better understand, and to help me build better relationships with them... and yet I know this glass can't allow it. But the winds of change will shatter this glass, cracks from friendship, family and love give me hope. I may burn brighter as more fuel from the struggle is thrown upon the fire within me, this glass will shatter.

I find myself inspired to write a little more flowery than normal, so I apologize for my consistent use of metaphor, last night however it actually rained, and in my sadness and frustration I felt inspired...

Last night I listened to the rain, I watched the water dance as the wind pulled it to it fro.
As shallow lights in their distance illuminated the water to an ever steady glow.
The wind began to howl, it felt from the excitement.
The water kept it's time, never once to fight it.
The lights; flickered, a chance to join in glee
And so I lit a candle, to let the fire see.
The flame inside moved along watching ever close.
But never once could it dance along, lacking like a ghost.
It smiled to me, to let it outside, not knowing what's in store.
That if the fire got too wet, it would not burn much more.
I cracked the window to better hear, of the ever pleasant beat.
The tapping of the drips and drops, the wind ripping at its heat.
The flame, afraid, it moved away, the wind was far too strong.
The candle knew it's place inside, it couldn't dance along.
The candle looked at me and burned a little brighter.
Then flicker twice, and out it went, it wasn't born a fighter.
The wind blew quick, the fire gone, and now left with the smoke.
Sitting beside the ember, glowing, dying, to me,  it spoke.

"I cannot dance with the others this way.
I find this fact to my dismay,
But if they still would like to play.
I'll change my form, from orange to gray."

The smoke around me, whisked far outside,
I watched, and smiled as it danced with pride.
The flame and smoke were one in the same,
But it was the wind, who inspired the change.