Edges and Pills

As 2016 began I was excited to be defining my timeline for treatment soon. However, my early morning appointment with the doc turned out to be less exciting. She answered my questions as best she could however the FDA had yet to release that information: Zepatier is still waiting.

In Canada, the drug was recently approved. This by no means necessarily speaks to any superior efficacy, merely different timelines and different standards. (California has three million more citizens than Canada, smaller governments can act faster.)

Normally we would proceed with an off label prescription, however Zepatier is a new drug not a new combo of drugs.

Sometimes with Hep C (HCV) meds combination uses are FDA recommended. If they're not, then it can be harder to get them approved from an insurance company. In 2014 Sovaldi and Olysio were approved separately, however their use to treat HCV as a combination took an additional set of studies which was approved later. I took the combo two months prior to its FDA approval because of the 'off label' option.

In the case of Zepatier it has not been approved and since it is not a combo therapy it cannot be prescribed 'off label'. I can hope for a trial while I wait, but other than that I really have no options yet.

Treatment is part of what I need to do to get healthy. Treatment can cure me but it can't heal me, the exhaustive damage to my liver I've already sustained is enough to very nearly kill me. My liver doesn't have long, maybe a year or two if I'm lucky. So treatment is really only part of what I have to do to survive this.

This is an outline of the major sectors I'll be focusing on as I go through treatment:
Nutrition- Low Sodium, High protein diet with liver friendly foods.
Exercise- 1-2 hours per day 1/2 cardio, tone down existing program: P90X.


P90x is workout regimen for those already in shape. I have spent the last 3 months doing a combination of low impact work-outs and walking (at first only about a mile a day, but now near three months later I average 5 miles per day.) Even though I'm better off than I was a few months ago, doing P90X is no cakewalk. It is an intense as you need it to be, which is why I like it.


Social- Connect deeper with friends by learning more about them.
Emotional- Talk to others about experiences, and complete goals.

As I implement these changes in my life I will be logging my physical and emotional state during treatment.

The doctor's visit was not without good news however, as my MRI results are fine: thankfully no cancer. Most everything else seems to be in good health, which is always relieving to hear.

With no knowledge of when I start treatment, it's going to make dating with Hep C that much more complicated.
Wait, what? Dating? What about health, treatment and focusing on all of that....

Yea, Dating. I'm 29, so it's part of my life and one I shouldn't ignore. I've learned from the emotional stress and depression of my prior treatments.

It's important to keep close the people and things that make us feel alive.

What composes us makes us wonderful but definition is found at the edges, in differences and limitations. Edges are the best place to build, it may require a little more balance but to expand the horizon is something uniquely human.

Today is World Hepatitis Day.

Over 400 million people around the world suffer from a form of Viral Hepatitis. In the United States Over 36,000 people die every year from liver disease.

Around the world over 4,000 people die every day from Viral Hepatitis.

It's known as the silent epidemic, because for years it hides, not displaying any symptoms.

I spend a lot of time talking about Hepatitis C, because it's been eating away at my body since I was born.

But this post is different. It's mostly about the other two major forms of Hepatitis.

Both Hepatitis A and B have vaccines. While Hepatitis A is unlikely to kill you it will make you sick...for months. Hepatitis A can run its course and rarely develops into anything worse. In an otherwise healthy adult Hepatitis A will be like the worst flu you've ever had. In a person with a compromised immune system, it can be life-threatening.

Hepatitis A is transmitted typically via the fecal-oral route. Like C. Diff and other forms of food poisoning you'll get it from (feces)tainted food or water.

Hepatitis B usually develops into a chronic illness. Like Hep C it is a silent killer often slowly destroying the liver. There are treatments for Hep B, but since there is a vaccine, focus is more on prevention than treatment. Like Hep C(HCV) there is no cure, while someone with HCV can be cured by clearing the virus through Sustained Viral Response, this is not the case for Hep B.

When someone is diagnosed with Chronic Hep B it is (for now) a life sentence. Treatment for it often is required as a daily pill to prevent the viral load from increasing and causing more damage.

This year the WHO announced its first ever treatment guidelines for Hep B.


If a person with Chronic Hep B or Chronic Hep C is exposed to Hep A, the effects can be crippling.

Hep A and B vaccinations are available for infants, and can be taken at any time/age and still be effective.

Every year we move leaps and bounds toward better prevention methods, better testing and better treatment options for all forms of Viral Hepatitis.

World Hepatitis Day is about taking preventative measures against Viral Hepatitis, getting tested, and getting treatment.

I am a person with Hepatitis C Genotype 1a Q80k Polymorphism with a decompensated stage two liver.
I was put into the stage four category two years ago.

One year mortality rates

As this chart shows, my odds get slimmer ever year. I'm lucky though.

This year I have an ~89% chance of complete liver failure. If a new treatment option does not appear by the fall, I would not be surprised to need a transplant come winter.

A transplant for individuals with HCV or HBV is not a cure. It's far from it. When the transplant takes, I will re-infect that new liver.

My odds after that do not exist.

Because there isn't a large enough sample size who have done this at such a young age. I've heard estimates of 10-15 years, as I'll likely re-infect the new liver soon after it takes.





Oh! Hello there! Still reading?

Wondering where that 400 million comes from? Well If you look at CDC data it'll point to WHO, if you look at WHO fact sheets it either doesn't say or points to the WHO, The Lancet, or CDC data...So i did some digging. (The Lancet article is about deaths, not in total)

400 million people have Viral Hepatitis which comes from about 240 million for HBV, and 130-150 Million for HCV.

Plus or minus 10 million is a silly think to throw out there when their own fact sheets would have them add up to 370-390 million.

240 million is actually a ten year old low-ball estimate.
The number is based off something called an empirical Bayesian hierarchical model. The number was about 223 million back in 1990, but a 2005 estimate had the number at that 240 we see today. 

They just haven't updated fact sheets to respond to the increase, and i have yet to come across new data. While i lack the knowledge to employ the model it's reasonable to assume millions more for HBV.

So what about HCV? that crazy range of 130-150 million people? The numbers are all over the place estimates go as high as 180 million.

Hopefully we'll see a study soon with application of the model so that we can have a more accurate picture.

So I'm sad to say that 400 million is probably a conservative estimate.