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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, April 19, 2014

Missed calls

A decent lot has happened since i last posted. Yesterday i had my follow-up endoscopy. My lil sister was kind enough to drive me there, in my usual form i refused to take off my shoes, and resisted everything in my drugged up haze. The next day has a few fuzy details after i saw them start the injection, and then it was Saturday.

I did learn a few big things prior to my surgery. I learned that my treatment would begin later, because they're trying to get me on drugs that will have potentially less side effects (but sadly no data to back that up at the moment due to the state of my liver) and will take half the time.  An article came out a while ago, and i had a comment exchange with a  friend on my FB wall, i've attached it below as i'm sure many of you have similar questions if you've seen the article.
So recently I've noticed that a few people have read a BBC article. Yes a version of this will be used in part of the therapy i will soon be on. The numbers reflect people with functioning livers, i am not among those. So this is incredibly promising, however not the golden ticket it would appear to be.
Hepatitis C trial a 'turning point' http://www.bbc.com/news/health-26987653
A new treatment for hepatitis C cured 90% of patients with the infection in 12 weeks, say scientists after studies in Europe and the US.Top of Form

Friend: Thanks for the post. Will you please explain where the study shows that the numbers reflect only people with functioning livers? They stated that all participants were experiencing liver cirrhosis. I think there might be a gap in my knowledge between cirrhosis and functionality of the liver. Additionally, they state in the preface of the article that Hepatitis C can be spread via "blood , or bodily fluids of an infected person," which is erroneous, right? I thought that it's only spread through blood to blood contact.
*Edit-Here's the original article. It's pretty heavy, but explains the details: http://www.nejm.org/doi/full/10.1056/NEJMoa1402869...

Me:  Bodily fluids is technically correct, because blood is one. There can also be blood in other fluids. Blood to blood is correct.
Cirrhosis has levels. I have advanced liver cirrhosis, for reference.....http://www.meddean.luc.edu/lumen/MEdEd/orfpath/cirhosis.htm
I have a decompensated liver.
Me:  I know they do, I asked my doctor who was familiar with this information, and confirmed with other GIs.

Friend:  Thanks for the information/clarifications. The article that you linked on liver cirrhosis states that it is considered to be a "self-perpetuating irreversible process." Is that for all stages?

Me:  Once the tissue becomes necrotic, or starts to exhibit signs of liver failure..., the only method is removal/replacement.
early states though...As long as the nodules aren't fuckall crazy (aka they don't regenerate and possibly spawn cancerous lil shits) it can be dealt with and managed depending upon the remaining healthy cells.

Early phases: yes it can be dealt with. Late phases the only solution is removal.

Another dismaying fact is that i have rather active regenerative nodules. but! all is not lost! the world is still fantastic and beautiful, because, yes my doctor and advocates have a hard case to sell; but they have a case to sell. Me. And the more faces i see beside me, the more i realize how much of a product their selling. My support network always comes through, dozens of friends, realistically dozens of family members is what i should say. i am constantly surprised by the outpouring support and love pushing for my success.  thank you all ever so much. <3

Sleeping in recovery with my shoes on.

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