Why do you think they call it a LIVEr?

HepLikeMe: recovering from hepatitis treatment

If we didn’t need our livers to live, why are they named LIVEr?

If you have Hepatitis C and are reading this blog, I assume you have a working knowledge of this disease.  If not, there are great sites such as

http://www.cdc.gov/hepatitis/C/index.htm

and crap sites where lay people talk out their irresponsible asses.  If a statement starts with “I feel”, “I think” or “This herb won’t hurt, it is organic/ natural” run away.

My daughter tells me I have always been a bit ahead of the curve.  She says I am hep. I moved to the country and painted my mailbox blue before it was hep.   I got sober before it was hep. You get the idea. BTW hep is better than hip because Cab Calloway said it.

I like to type BTW.  You have been warned.

Indeed, Hepatitis C has now become main stream

http://www.chron.com/default/article/CDC-mulls-hepatitis-C-testing-for-boomers-3550384.php

I have just completed round two of treatment for Hepatitis C genotype 1.  Is the treatment worse than the disease?  No, but  that is difficult to grasp when you are asymptomatic.  Or at least you are ignoring symptoms.  This round sucked less of my life out of me, only because I brought the experience of round one.  Sounds like a prize fight. TKO I was technically knocked out by round one. I didn’t care after a while.  A new experience for me.

In order to survive, one must care.  The treatment says fuck it.  Don’t fuck it

In 2007 I began my first, and what I thought was my only, round of treatment for Hepatitis C.  The treatment, Pegylated Interferon and Ribavirin, did not clear the virus (we don’t say cure.  That is for hams).  What it did do was kick my ass to the curb.  The recovery was longer than the treatment and I never did get back to where I was.  All of my depression and insecurities bubbled up.  Depression is so depressing, insecurities so insecure.

In 2011 I began treatment with Interferon, Ribavirin, and two antiviral study drugs from Gilead Pharmaceuticals. Each drug attacks a different site in the virus life cycle. Early on there was no detectable virus.  Still not.  My treatment ended after a short (wink wink) 24 weeks.

Background:

In 1992 I donated blood and got a letter in the mail from the blood bank saying “you’re a winner.  You have Hepatitis C.  Please don’t give us your blood again.”  I was a winner.  No further information.  I went on with my life but didn’t donate blood and made it clear that my organs are not a gift to the living.  There was no proactive information regarding this disease and I had not exposed my liver to toxins in years.   I went underground with my secret.  Ironies abound. Forward a few years. I worked in Medical Affairs for a large pharmaceutical company, and my field of expertise was gastroenterology.  So, having access to the top research hepatologists, I had a liver biopsy performed for base line.  Marvelous results, you are great, minimal inflammation, no scarring or activity.  Go away and check back if things change.  Whatever that means.  I saved myself for new therapies.  I was treatment naive in the lingo. I love it when I can say words like naive.  There are web sites to define phase and staging of liver biopsies.  Bottom line,  Inconsistent

In 2007 during an annual physical, (which the AMA is now discouraging) my liver enzymes were elevated.  My internist wanted to send me to the local gastroenterologist, but me being Dr Science, I said no way.  And I pursued another research hepatologist.  Had another biopsy, phase one grade one activity.  Options, ignore or don’t. By then there was a minute amount of data indicating that maybe older patients (> 50) should go ahead and get treated.  That would be me.  Amazingly, there were no new available treatments.  So, I went to the government site www.clinicaltrials.gov , and entered my disease and city. Voila, there was a site with a randomized trial comparing Standard of Care (SOC) to SOC plus telaprevir.  This site was affiliated with a gastroenterology department at a medical school where I had a relationship (not relations) with the head of Gastroenterology/Hepatology. This DID NOT influence my ability to enter the trial.  But because of that relationship, I had confidence in and respect for the quality of research.

Enough for today.  This is a lot of work.

Deb

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2 thoughts on “Why do you think they call it a LIVEr?

  1. What an extremely positive and inspiring post.
    I am always very impressed by your writing. You always post interesting info.
    Keep it up. Keep blogging. Really looking forward to opening your next article.

    Like

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