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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!

Saturday, October 13, 2012

Doctors Orders

I despise the scheduling department, for so many reasons. But here is yet another one; I had an appointment for Tuesday in the afternoon after work with my doc. Apparently no one thought to contact me until two days prior to my appointment to notify the appointment at the close facility was unavailable due to my doctor not being in that week. So instead they moved the appointment at a facility much farther away, to a different doctor two days later in the middle of the busiest day of the week. My 11:00 was more like an 11:45, which I had to talk a half day off work to drive out there to.

So not only did I have to wait two more days to figure out the mess the first scheduler handed me by telling me to stop all meds. But now it was the worst possible scenario for the continuation of my treatment, because it was with the busiest doctor.

So I went to work early, and left to go to the doc. After about twenty minutes of waiting my negative competent nurse came out to talk with me. I still have no idea why; she told me it was the busiest day at that my doctor would be a while. After two minutes of saying nothing of note she returned to bowels of the GI department. So I picked up my lovely Crohn’s disease pamphlet and continued to reread it until I would see the doctor at a little after noon. Ready to explain the shituation of a non-medical professional calling me to tell me I should stop my meds and to fight for staying another month he examined my numbers. Surprised I was functioning, considering the fact that I’d injected post severe bleed and my now very apparent anemia, he explained my numbers are all border line. Since I’d successfully injected and my viral load had not zeroed out it was a cacophony of confusion. Prepared for the worst, I listened as he explained there is a new treatment that is interferon free so long as I can go a year without an incident. After going over more numbers we came to the conclusion that I would continue the treatment for another month, but If I couldn't zero out then, that I would need to stop. It was a mix of news, but the perpetual state of limbo I’m in seems to keep dropping the poll closer to the ground and limiting my potential for success.

Excited for the prospect of a new treatment and another month, I left in good spirits. That night I celebrated the “News?” with some of my best friends. We went to a hidden bar, and I paid with two dollar bills, the night was a release from so much of the tension and insanity of dealing with rapidly growing incompetence of ancillary staff. 

With 14 injections done, I've come too far to give up. I know I've got a long road ahead of me and my body struggles along the path that’s been set. But luckily I am surrounded by support from all my friends and family. Some of the biggest surprises come from friends who I've not spoken with in years, and co-workers who've been following what’s going on as best they can. Everyone’s love, concern, and hope helps fuel the fire within to fight for what I’m doing. If I haven’t said thank you enough, I truly feel your encouragement, prayers and support have helped push me through those harder moments. Thank you all so much :-)

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