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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.

Thursday, April 3, 2014

Ticks and Tocks

A lot of crazy medical stuff has been going on but first i feel happy, and i must share why.

In our lives we find struggles, we find hurdles. Sometimes our legs don't jump just high enough. It's not the best, but there is providence in struggle. In our lives we encounter enemies that will crush a soul, an arm, an idea, a smile.  It takes more energy to recover what was crushed, but it's sweeter. To those who struggle, enjoy the story, the ride, the journey, the crescendo. We live between seconds, and we will always have just enough time. Life; love, sadness, pain, joy, anger happen to sweeten each next piece until a perfect end.

I have recently come to terms with the fact that I'm not as physically able as i once was. I get tired after a few hours of day to day things. I've finally found a balance of supplements that's working well, my new doc gave me some info that helped a lot. The downside to getting rid of acitites is the process. it's tripled my trips to the bathroom, and drains me of lots of nutrients. My muscles can't operate properly and they seize, the problem is that it now happens anywhere.  My metabolism was already on constant eating or pass out mode, this just made it worse. i am tired and worn out so much easier. My solution is 750mg Mg 500mg K 40+g Protein, >200mg Na, 300-500 calories per hour, 8 oz water per hour, and two low stress 20 min exercise routines. high iron, minimal red meat, and a ludicrous number of Bananas. with that, i have days that work, i can function. 
i have done blood tests, ECG, a urine sample where i peed in jug for a whole day... still don't get that...MRIs, Endoscopies and I'm up for EKG and a few other tests it seems before i can start. Being cured is that goal i strive for, this process has been sped up tremendously with help from my family, my fantastic doc and staff as well as some of the best Health Advocates I've encountered. But the whole wait of it, i will savor. i find joy within ticks and tocks, because it reminds me to experience what lies between them.