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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!

Tuesday, August 30, 2016

Deviated September

Yesterday was my fourth blood test, in the last month. My bilirubin and INR have been at a levels worry some enough to postpone treatment.
(The cost of a treatment is more than the meds alone, this month I spent over $350 out-of-pocket costs and that's with insurance!)

With the help of my family and advocates I was able to negotiate better terms on the price I can bear. But all of this is contingent on my having my present insurance and that I'd ordered and received it before I switch insurance September first.

In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice.
This is my third Gilead treatment, so it's hard trying to lobby for support.

While I'm pushing to get the hold/stop order from my doc removed, I'm also moving. (Which when you have health concerns requires certain things.)

If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment.

It's about time.

That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off.
The weeks I lose waiting for treatment aren't just the time now, it's less time later.

To savor every day that I have, that is all i can do.

Tuesday, August 9, 2016

Wait and C again

I've spent more time in my life, waiting and seeing, than much else. Over the years since I was eighteen, I've spent a little less than two years of my life on a treatment for Hep C.

I had been looking at Zepatier as a potential treatment, and had devised a method by which I would be able to take it. However Epclusa was approved by the FDA days afterward, so we moved forward with that.
I am presently awaiting the Epclusa Treatment. While I've managed to get it approved I happened upon yet another snag.

My liver blood panels weren't looking too good. My bilirubin had shot up to nine, and now rests around six while my INR has gone down to 1.9 (for reference, and INR of: .9-1.2 is average, while a bilirubin level of .3-1.9 is average.)

Until my liver function starts to improve, I am again waiting. In the mean time an MRI and another blood test hopefully will show progress enough to begin treatment.

Overall the treatments have taught me the power of resilience, humility, and patience.

As I see it, I've waited my memorable life for a cure, what's a few more weeks?

To those awaiting treatment, sometimes all your efforts may seem in vain.
Dig deep, just a speck of hope, let it grow by holding the hands that help you.
Know that you are not alone, that others can be your champion when you lack the strength.
We may at times come across a canyon too great, but together we can build a bridge.

Fun fact: Naomi Judd is a spokesperson for the American Liver Foundation

Also super stoked that the NoHep website launched and the movement is happening: Elimination of Viral Hepatitis by 2030, NoHep