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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!

Tuesday, December 23, 2014

Now You See Him, Now You Don't

The frustration with invisible disabilities comes from people not believing  or understanding my condition.
Most of the time when I go to Disneyland I've found their Disabled services helpful and courteous...once they realize that I'm not lying. I understand the challenge that comes with discerning a person with disabilities needs. Disney has gone out of their way to create systems to promote and help every guest have the magical experience.
Last week, I was met with a new change in policy, which I became familiar with following my discussion with Guest Relations.
(The Disability Access Service(DAS) policy now allows some rides to not require a DAS pass if they see a physical impairment like a wheel chair or knee brace.)

After explaining that I'd previously been issued a pass due to my inability to sit, stand, or walk for extended periods of time,  explaining how ascities work, and fatigue that also comes along with advanced liver cirrhosis. She asked if I used a wheelchair or cane at home, to which I responded that I have a cane for when I need it. I then reiterated how ascities impairs one's normal functions.  and that I've done this before, I've gotten DAS passes to help enjoy the park with my disabilities.At this point it became evident she did not believe me. She said there was a recent change in policy, suggested I use a wheel chair or cane, and continued to explain the rides at which they would allow me to use an alternate service because of a visible impairment. I reiterated my need, unable to explain my point further due to my lack of knowledge as to how the new policy had changed.

To help explain, as someone who doesn't outwardly appear as though I need the assistance, being  in a wheelchair or using cane creates a different experience. Some either speak to me like a child, or speak to the person wheeling me around. Those who think I'm gaming the system, will walk up next to me, and talk about me. The more timid assholes just make comments and stare. I have no interest in evoking these reactions; alongside the challenges of navigating Disneyland in a wheelchair when I do not always require it. Which, when a guy like me walks around out of his wheelchair...every stare, ever comment just gets worse.  So without a DAS pass, I instead have a choice wherein I can attempt to deal with shorter lines that I can find; or grab a wheelchair be allowed to use the services on a few rides, and sit back and "enjoy" the rides.

I applaud Disney's efforts in helping anyone and everyone have a magical day, but it's distressing and frustrating to be met with outright opposition by staff because of a lack of understanding.

Tuesday, December 16, 2014

Excuse me, miss.

Sometimes priorities seem strange. On Monday, in all my haste I took my medley of pills, but left an important one out.

All of my alarms set to the tune of Taylor Swift songs, and people reminding me didn't help. I'd even had it with me to make sure that if I'd stayed too long at the Christmas party I was attending, I'd have it.

(if you're curious why i set it to Taylor Swift songs, it's pretty simple. The songs i pick catch most people's attention, aren't offensive, are positive and upbeat, and they're really catchy.)

I had all of my pills in front of me, and I was momentarily distracted while taking them. With my memory being hazy, I left thinking I'd double checked. But today when I got home, I saw it sitting where I put the pills I'm about to take.

I missed a pill. I forgot to take my Harvoni.

In all my years, in all my treatments I've never missed one. I've been a touch late in taking a Ribavirin, but I underestimated my greatest enemy in this; myself. As the years progress, and my condition worsens I am glad that the treatments are getting easier, because routine will press upon me to forget. The benefit of habit and routine is doing something the same every day, and making it easier to remember.  And when it's important, those close to you ask  "did you take your pill?" my routine response is yes. Therein lies the trouble, that ease of memory is a double edged sword, as in my case.  Having a  generally foggy memory without lactulose doesn't help. Because when I thought back, I'd unintentionally created a false memory because of my routine answer. I remembered everything up to that pill, and everything afterward, and the circumstances were basically normal.

So what does that mean?

Well, I don't know, and really nor can anyone tell me. as there isn't enough data to show what happens when you do forget.
Turns out they don't want someone to intentionally forget a pill, when a potentially billion dollar study for FDA approval comes around.

As to what becomes of this missed dose, and how it will affect me, how I move forward... I'll keep you informed. In situations like this a little knowledge can mean writhing in pain, or walking upright. Sharing this knowledge is important. (While the info will be here, I will also be posting an exclusive comprehensive of this, related Harvoni info, and any results on HepMag before the solstice.)

As for tonight, I took my pill, and I sure as hell won't be missing another one.

Now, to Shake it off.

Monday, December 8, 2014

Kanye knows

After a week of some of the most voracious ascities I've had yet, my feet finally look like feet. While on Harvoni i'm limited to a half dosage of my diuretics. I assumed this would be the case as they are the most likely drug interaction to cause an issue with...anything. seriously though. anything.

Reduce that swelling and Jaundice!

Diuretics, while fantastic at their job also purge the body of lots of other things, which is why caution applies to my continued taking of them while on Harvoni. But this situation I've been dealing with has been coupled by a newly growing side effect.

Being tired may not seem so bad, but as my 10 hour night, tack on 3 hours of naps, then 6 hours of naps. I can do even less in a day. I find myself constantly fighting off fatigue, it's odd, because the only way I've managed to fight it off is to keep moving. It's when I stop that I just fall asleep.
I know that bottle says "Side effects may include fatigue." but there really should be levels of fatigue. Because if i get past 20 hours of sleep a day, that's not fatigue that's hibernation. 

So if you see me doing some jumping jacks or random stretches while having a conversation, the fitness I'm into, is fitness energy back into my day.

Wednesday, December 3, 2014

Dear Fast food

Dear Fast-food,
When I was a kid, I used to love you. Unusual combinations of tasty treats, perfectly done cheeseburgers and magical pizzas.
But as I've grown older I'm afraid we need to take a break. While you catered to fat content and calorie intake labeling you neglected one big problem. And unfortunately it's kind of a deal breaker. over the last year I've realized the importance of watching sodium levels, I had no idea it was the source of my yo-yoing weight (going from 150 to 190lbs in less than two months isn't healthy nor is the reverse). My liver condition makes me extra cautious of sodium, and I try to keep it at about 1,000-1,500 mg per day.

But the thing is... even if I ate what is normally healthy (2,300mg) I still would be unable to eat any of your finely crafted foods! With the average American consuming morethan 3,400 mg of sodium per day, it's no wonder childhood and adult obesity is such a problem.

I'm not alone in my low sodium needs, it turns out children, seniors, and others overall accounting for nearly half of Americans are in the same boat. with the rise of fatty Liver disease (and NASH later in life), I can't be seen with you until you drop that sodium level, to a responsible amount.

What do I mean by responsible?
if you serve an item, which is 20% of typical calorie intake, keep the others in balance too. When Fat/Sodium/Cal are all kept at the same ratio of their respective daily intake it helps, I'm not suggested a menu overhaul, but rather a heart and liver healthy option. Potassium (cloride) is salternative however it too should be kept in balance if added.

Because when it comes down to it, if I'm on a road trip, I don't have many options. And I hate feeling that dirty feeling after an indulging meal. I love what we had, fast food...maybe we'll see each other again someday.
-Rick Nash

Tuesday, December 2, 2014

Party Trays

It's been over a week since I began the Harvoni treatment. It's by far the easiest one I've done. The side effects from it only enhance my existing symptoms. 

To say that any treatment is a breeze would be far from the truth, but one pill a day without the need to take it with food... it's a dream come true.

What's the big deal about taking a pill with food you may wonder, it's more of an associated distaste for whatever you eat your pills with. In order to accomplish the fat requirement with incivek I ate mini donuts with my pills, more than two years later I still can't eat them without feeling sick to my stomach. Even on a milder treatment like the last one, I can barely eat the fig bars I would so frequently eat to ensure my pills be taken with food.

While my doc OKed to use of my diuretics at half their present dosage I am reluctant to use them. The reduction of any potential interactions has always been a preference of mine. It's hard to know what kind of reactions will come from drug interactions. Recently I've learned the value of really keeping track of  my sodium levels, but just this last week I discovered something else I should look out for.

Ammonia. My body doesn't process things properly, and Ammonia is one of the major factors in Hepatic Encephalopathy. While I have lactulose, I seldom carry it on me, I have it in locations I frequent. the brain fog of encephalopathy (I have stage 2, Moderate HE) has very interesting triggers. While I must consume protein in large amounts to fight off muscle wasting, I can't consume too much or I risk triggering encephalopathy. It's yet another reason why I need to drink plenty of water, but the one thing I didn't think about was how present ammonia is in food.
Apparently I discovered the worst culprit of ammonia-high foods. A meat and cheese party tray.

Thanksgiving is already an interesting minimalist meal when sodium is a limit, but the idea of ammonia-high foods hadn't crossed my mind. After indulging in some meats/cheeses/crackers from a party tray, I assumed I would just have to watch my sodium balance. The brain fog came within a few hours, and thankfully I was able to determine what it was quickly and convey it.

To better prepare myself I found this handy chart for watching my ammonia consumption.
Apparently I'd decided on consuming from the top ten, a mistake I won't make again.  Keeping the balance is a priority. Similarly finding high protein foods with low sodium, and high carbs is never easy, but luckily Fresh and Easy carries an enriched egg pasta with super high protein. it's quickly become a staple in my diet.

Using more fresh ingredients and modifying menus off http://www.budgetbytes.com/ as well as using their grocery-recipe builder has made things much easier, and I recommend checking out the website if you haven't.

As for the Harvoni itself; to expand on what I mean by existing symptoms, I shall walk you through a day.

When I wake up, regardless of how much I sleep, or how much water I had the prior day, I wake up with feeling tired, and with an odd headache. The only way I can describe it, is as if my brain were scraping against a brillo pad. I'll fight the next few hours trying to avoid falling asleep, thankfully my GI tract will keep me awake, purging my system of anything left from yesterday.

If I fall asleep I'll wake up with a very specific hunger, it's a low blood sugar hunger. my body often mimics (typically nocturnal) hypoglycemia due to my inability to process most foods properly.

my eyes will feel strained within an hour or so, due to inconsistent blood pressure and random surges.
If I don't move much for any period of an hour or two, my ascities will show enough to stiffen the joints, but rarely more due to my proper balance of diuretics, water, and sodium intake. If I don't consume enough water/ magnesium, my legs will spasm out of control.

Emotionally I wear my heart more on my sleeve, having a hard time not being caught up in emotional moments.

As the day progresses my hunger dissipates and I can't tell until a few minutes beforehand how hungry I am. If I don't eat within a short time of that hunger, I'll simply fall asleep, and wake up with a headache.

Much like some people watch calories I watch my levels. Sodium intake, ammonia intake, protein intake, vitamin D intake, water intake, and how frequently I go to the bathroom. My remaining diet will respond to my analysis of my bathroom trip. Knowing colors, consistency, and unusual properties are essential to making sure a daily diet is healthiest.

As the evening approaches and I take my Harvoni, a dinner prior and a small dinner afterward fend off any potential hunger issues, and attempt to ensure tomorrow I won't wake up with a headache. by This time, no matter how much I've moved about, or what I've eaten I feel a jabbing sensation in my lumbar region, usually accompanied by the feeling of my right side being squeezed by a bony hand.
After the insomnia fades, I'll bounce between sleeping and awake for a few hours until I end the day with a 3-6 hour night's sleep.

Those are not the enhanced symptoms, everything I just said is now more pronounced.
If you were to meet me for lunch or hang out for a while, you may not notice. I seem a lil tired. "have an energy drink." some may say, because I look alright otherwise. When I was younger, this was irritating and frustrating, but as I've lived with this for so long now, it's easy to forget. And I'd rather people do forget, because this shouldn't define me.

So in belated thanksgiving,  I am thankful for my friends, family, and girlfriend for forgetting when it's not important, and remembering when it is. I am thankful that this will be the last thanksgiving I have to be thankful for a treatment, for a potential transplant. (And for another MRI with no liver cancer, yey!)

Sometimes symptoms begin to surface, and I slur my speech, my legs balloon, I turn yellow, and I say weirder things than normal. To help prevent that,  just keep me away from the party trays.   

Thursday, November 13, 2014

Six months and a quarter million dollars

With my last trip to the hospital I wasn't really sure how quickly I'd be able to start up my fifth treatment.  Interestingly, the time I've waited for my jaundice to subside, and my bilirubin and INR to return to a stable level, was about the time required to approve me for the new treatment.
That's insanely quick. To help with some perspective these are my previous wait times for treatment:

Number 1: Three months for healthcare approval, RX deliveries, and prep, after the treatment had been out for two years.

Number 2: Three months for healthcare approval, RX deliveries after the treatment had been out for near four years.

Number 3: Six months(technically eight months because of the denials/appeals) for healthcare approval, RX deliveries, and prep, after the treatment had been out nearly two years.
Number 4: Seven months for healthcare approval, RX deliveries, and prep( as well as transplant tests) as the treatment had been out for two weeks. (but each aspect had received FDA approval nine months and about a year prior)
Number 5: About a month for healthcare approval, RX deliveries, as the treatment had been out for  about a month.
I'm very lucky to have an amazing GI, Transplant Doc, Advocates, and nursing teams in general.
I also want to be clear: none of this would have been this fast without the healthcare reform that has taken place in the last two years. In just what I've explained above, know that my first three treatments were through healthcare from the companies I worked for, while the last two, hail from healthcare through Covered California.

This blog isn't about politics, and I'm not about to shift in that direction, this blog is about my journey through treatment. I simply wish to extend my thanks to those who have helped bring me here.
Oh yea! I mean, I guess I already said it and kinda ruined the big surprise...but yes! I have been approved for Harvoni and I will start next week. Harvoni is the lovely new treatment recently approved belonging to Gilead, the makers of Sovaldi.
I've had a handful of questions from people regarding the new treatment, so let's go through some FAQ!
Harvoni is a two in one pill, it's a similar to a combination of the treatment I was just on.
But won't that just produce the same result?
No! There are differences in the medication, the two drugs are made in synthesis to work with one another in a single dose.... It's like oil and vinegar, when they're poured in the correct balance they produce a lovely taste, but if the balance is off it doesn't have the same effect. (Technically Ledipasvir and Simeprevir target different nonstructural proteins, Simeprevir targets NS3 and NS4A while Ledipasvir targets NS5A, but at this point we're talking grades of vinegar in terms of comparison.)
Isn't Harvoni really expensive?
Yes, and no. As a single pill, it's very expensive, but it costs less than both Sovaldi and Olysio combine. A really big part of understanding the cost breakdowns of these new treatments is what are they relative to each treatment as a whole, and how they can be administered.  Connie M. Welch did a great breakdown of this on her blog.

How long will you be on it?
I'll be on it for  24 weeks, provided my liver doesn't decompensate during that time.
Average treatment is to range 8-24 weeks, depending upon a whole host of factors.
How did you get it so fast, didn't it just come out?
Yes, it came out in October, and there are a few factors in my favor. The first is that my doctors submitted the approval forms as soon as they were able to. The second is that I've already failed the predecessor( also having just done the requisite tests). And the third, while I have a horribly cirrhotic and nearly useless husk of a liver I'm otherwise healthy and young.

What are the side effects?
Seeing that my liver isn't in great condition, It's roughly the same as before, photo-sensitivity, headaches, fatigue, nausea, dry skin. One of the more unforeseen things is the interactions with my diuretics, so that is sure to be interesting.

Needless to say I'm very excited to start up the new treatment.
This interim month in yellow has helped me put things in perspective and come to terms with my internal conflicts. Reflection after a tragedy is important, I have a much better understanding of a more personal sadness than I ever thought I may encounter. I can't be kept down, be silenced by my own self, so I shall view myself accordingly. After all, The difference between re-silence and resilience is how you see the I inside resilience.

I should be finishing up my treatment during Hepatitis Awareness Month, on May 7th. 

Friday, November 7, 2014


As my bilirubin stabilizes i'll have another update next week. I see my doc today, and if all goes well i'll be well on the way to limbo number 5. How low can it go? Lets break the floor.

In the spirit of waiting, sometimes i have vision, not blind yet, so i wrote a slam.

Hep See.

A general malaise, passing the days, as they slip into a haze, as the days fade one to the other, there was a birthday there, my mother, my father, my brother, too many to keep track, I'll watch my back the counts rise, perspective and realize I'm frozen here, it's not fear it's self mutilation, thanks to a mutation, I won't evolve, can't be solved I drop into small statistics, I'll go ballistic if I can't, a reason to reason reason in this constant change of season. what's the weather like?  What's with the forecast, vials drawn together, never fast,  they ask me how I'm doing, you've got eyes, that's my reply it's painted in gold letter on my goddamn forehead, I'm heavy this shit's like lead.  Another letter in the mail, six months and a million dollars, k? Do I even have a choice?  If I'm weak they're my voice. I'll sit this one out, couldn't stand the doubt, my spirit's lite, my mind adrift, salt of the earth not here, I'm lost at sea practicing the alphabet and I'm stuck after just be.

Saturday, November 1, 2014


There is no better day, than today to start something. 
While, for the most part, I can deal with the struggles of failure, I find sometimes my frustrations leak out in unexpected forms.

They push people away, but ultimately pull them in. While the world around me moves, I observe. It's glass all around me, and the sad part is that I put it there. Allowing others to see my life, to be better understand, and to help me build better relationships with them... and yet I know this glass can't allow it. But the winds of change will shatter this glass, cracks from friendship, family and love give me hope. I may burn brighter as more fuel from the struggle is thrown upon the fire within me, this glass will shatter.

I find myself inspired to write a little more flowery than normal, so I apologize for my consistent use of metaphor, last night however it actually rained, and in my sadness and frustration I felt inspired...

Last night I listened to the rain, I watched the water dance as the wind pulled it to it fro.
As shallow lights in their distance illuminated the water to an ever steady glow.
The wind began to howl, it felt from the excitement.
The water kept it's time, never once to fight it.
The lights; flickered, a chance to join in glee
And so I lit a candle, to let the fire see.
The flame inside moved along watching ever close.
But never once could it dance along, lacking like a ghost.
It smiled to me, to let it outside, not knowing what's in store.
That if the fire got too wet, it would not burn much more.
I cracked the window to better hear, of the ever pleasant beat.
The tapping of the drips and drops, the wind ripping at its heat.
The flame, afraid, it moved away, the wind was far too strong.
The candle knew it's place inside, it couldn't dance along.
The candle looked at me and burned a little brighter.
Then flicker twice, and out it went, it wasn't born a fighter.
The wind blew quick, the fire gone, and now left with the smoke.
Sitting beside the ember, glowing, dying, to me,  it spoke.

"I cannot dance with the others this way.
I find this fact to my dismay,
But if they still would like to play.
I'll change my form, from orange to gray."

The smoke around me, whisked far outside,
I watched, and smiled as it danced with pride.
The flame and smoke were one in the same,
But it was the wind, who inspired the change.

Thursday, October 23, 2014

B Frank

For the past month, I haven't really posted much of anything.

I've been absent. I do not merely mean online.

Learning from failure, isn't about bouncing back and immediately getting back on the horse. It's about taking a deep breath, a look around, and occasionally a look forward.

After my release from the hospital last month, I have routine blood work done each week to watch my bilirubin. My new yellow skin and eyes have presented me with new difficulties, not only socially but also in regards to my next treatment.
The trouble with a high bilirubin count is the correlation with my high INR, (a low INR indicates a clotting risk, whereas a high INR indicates a bleeding risk) once my bilirubin and INR stabilize, I should be ready for treatment.

In the meantime, I've been reorganizing my life in every way I can: my home, my routine, my goals, everything.
It's depressing, it's rewarding, and it's physically taxing. But to ignore my sadness would be to ignore a part of my humanity, I must look upon my efforts and remember that sometimes "a speckled axe is best." The idea that within the realm of struggle, our humanity is sometimes derived not from our success or failure but rather from a perspective of acceptance that perfection is not always worth the effort. And that to truly understand one another, we must from time to time produce a speckled axe.

I cannot focus on what could have gone wrong, but rather, enjoy what I did gain from my treatment. I saw my friends and family rally behind me like never before. I joined more online communities, and sought to carve the word "Advocate" beside my name.  I zeroed out for the first time during treatment.
So with timid steps I walk closer to a new treatment, carefully keeping an eye on my slowly fading yellow skin.

In the spirit of the upcoming Halloween I leave you with the words of the pumpkin king:
        Why does nothing ever turn out like it should?
        Well, what the heck! I went and did my best!
        And, by God, I really tasted something swell!

        And for a moment, why, I even touched the sky!
        And at least I left some stories they can tell, I did!

Thursday, October 2, 2014

Hepatitis C you later.

The whole hospital stay brought all kinds of news, and processing it took quite some time.

My bilirubin shooting up to 18 out of nowhere was bizarre. There had to be a cause, did something go wrong during treatment? Did I acquire some new liver problem? The answer was clear, but I really didn't want to hear it.

I'd failed three treatments, I intended on emblazoning a IV on my arm in ink for my 30th birthday. I'd never gotten a zero before, let alone zeroed to the end of treatment. It felt like for a moment, I touched the sky.

The HCV Quant/Viral Load blood work had been done and the reality that the IV I'd hoped for, fell to pieces. I failed four treatments.

I informed my family and a few people, it wasn't something I was ready to talk at length about, but it was something they needed to know.

It turns out the climax I had been hoping for, became a plot twist. When my GI called to tell me my bili count of 28, we spoke briefly about the prospect of future treatment. a new one is to be released in October, and we're looking into whether it's feasible or not.

But future aside, I had my present to deal with. This kind of news is something you need to wear. Something you can’t bottle inside, or it will fester. I transferred my rage into focusing on bettering myself, being in peak physical condition once again prior to the next treatment is my goal. Because I want to make sure that my body won't give this virus an inch in wiggle room.

With my girlfriend's help I cleaned my car to clear my mind. It was a step in the right direction. It was something I could impact and see my own growth and success. To remind myself that failure is more than losing. Failure has always given me a plank to stand on while I figure out my balance. Because in order to have failed, I tried, and to have tried, I braved the possibilities. It took courage to start this, not because of the success, but because of the failure. The possibility of failure is what makes something great . I've learned that doing something where the direct impact is measurable, visible, and helpful to others helps returns me to a calm state of being.

I also realized that nothing motivates me like failure does. As I cannot speak to what I would do if cured, I can speak to what I must do now that I've failed. With my new count of 1.9 million, I look forward to the future. While it is not how I would like things to be, I must and will become more than I am. In doing so, I stand a chance against this virus, psychologically and emotionally, which often is half of this battle.

While failure may be a theme, this movie of my life just got a lot more intense.

And I don't know about you, but I'm sitting on the edge of my seat waiting for the next news from the doc.

Wednesday, October 1, 2014

I'll have the bilirubin, hold the sauce, extra corned beef.

Hospitals never did instill confidence in me, as my complicated history with them would support. When I was 18, a hospital released me after a biopsy. I noted a pain in my shoulder as I left but they told me it was just from some small issue. Three days later the pain grew so intense it brought me back to the hospital, where they discovered that they'd nicked my hepatic artery during the biopsy and I was bleeding internally. I had to spend three more days in the hospital while they corrected their mistake.

The walk around the garden in my most recent visit brought a lot for me to think about. I reasoned to myself that the months in the hospital would be well spent as it would allow me to wait for a transplant and give me some years more of life. After the fourth day, my release was contingent on my bilirubin counts going down, since my other metrics were where they should be. The docs were puzzled to the cause of the rapid increase in bilirubin; it clearly started well enough before I contracted C. Diff. I watched my counts go steadily up each day, by Wednesday I was at 29.9. I was ready for a downward trend.

To combat my growing rage and frustration, I asked if I could walk outside more often. My cabin fever was setting in. With the assistance of a volunteer I was able to wander around outside under the hot sun. It felt invigorating, I soaked up as much sun as twenty minutes would allow. It would be a daily task I would seek out to put me in better spirits.

The trip had been made more comfortable by a dozen friends dropping by with stuffed animals. They each hung out with me for hours, some visiting several times. It warmed my heart to see my friends and family, and I thank them so much for being there at my side. My parents were on vacation when I came into the ER, but when they heard about my hospitalization they took the first flight out. By day four my mom was there every morning waiting for good news. On the seventh day, she would have it.

My bilirubin was at 29.1. While not a big downward swing it was still in the right direction. They also gave me another number, the game changing news of my Viral Load (Quant). With all of the metrics in good shape, I left for home. The C. Diff required that I take eight more days of antibiotics, which meant alarms every six hours. Thankfully they had it in pill form, which doesn't have the same foul taste. After I got home, food, sleep, and staying on top of my prescriptions and antibiotics were my biggest priorities.

I announced my freedom subtly on Facebook, it was exciting, but there was something I had to tell all of my friends.

Monday, September 29, 2014

I'll have the Turkey Quinoa Wrap.

Every so many years around the end of September I seem to take an unexpected trip.

This last week, my trips to the bathroom became more frequent, culminating in Friday's grand adventure. On Friday I had a blood draw to see what my viral load would be. Shortly after I met friends for lunch. It was at lunch when my friends all noticed something wrong. My eyes were more yellow that they had been in some time and my skin took on an orange tint. Following lunch I was very tired, so I took a nap.

I woke up with a jutting pain in my side and a missed call.

The doc called on a Friday evening and left her personal number to call back. This wasn't looking good

She informed me that most of my numbers were in acceptable ranges, save for one: my bilirubin. A bilirubin (bili) number indicates the condition of the liver, existence of infection, and/or a decompensated liver-- when it's high enough. For reference, normal levels range from 0.3 to 1.9 (mg/dL). My levels normally hang out around 3.0-6.0. This Friday, my bili was at 18.

It was time for an unexpected trip.

I self-admitted to the hospital and they too noticed the problem in the ER. One ultrasound and blood test later they got me on a handful of meds. My girlfriend was with me throughout the ordeal. When the jaundice set in, I saw her face in two distinct shades. I had been seeing through tinted vision for a day, but it was not until she sat next to me in the ER that I could see the err in my perspective. Because in truth nothing captured my attention better than her. She helped me stay calm when each test result raised more questions than answers.

They started an IV on my hand and began to pump me with anti-nausea and pain meds to manage the symptoms.

After the tests, they urged an MRI. One couldn't be done that night in the ER, so they admitted me overnight in order to take it first thing in the morning. An irony befell me as I was admitted: my MRI the next day was pushed back into the afternoon and evening since "ER patients have priority." That first night was a hurricane of vomit and feces. Every so many hours anti-nausea and pain meds would be reintroduced into my system to curb my rapidly worsening effects. The next day, the hospital docs informed me I had contracted C. Diff(1). Taking the RX for C. Diff was like licking an old lead paint chip dipped in turpentine, so I made it standard practice to wash it down with apple juice. It was administered every six hours. The C. Diff was pushing my system to the limits, and became the biggest culprit for the rise in bilirubin.

As the medication for C. Diff took effect, the vomit-feces-hurricane subsided and things were returning to normal. When the blood work got back they noticed my bili had continued to go up. It had shot up to more than ten times the healthy range. A bili count of 23 indicated the C. Diff could not have done this alone. They retested my HCV Quant (viral load) and told me the MRI results looked normal for me. Thus I turned my attention to my stomach; given my low-sodium, high-protein restricted diet, I could select from only half of my daily meal options. The food surprised me. I never thought I'd have a turkey, spinach, and quinoa wrap from a hospital. My hospital-imposed diet restricted my consumption of calories from the scheduled meals, a problem solved mostly by a near unlimited supply of turkey sandwiches brought by the staff on duty. Meals would range from turkey sausage, roast turkey, and mashed potatoes to turkey stir fry. It felt like a turkey-obsessed Bubba Blue(2) worked in the kitchen. The food became tasteless and disheartening as the week progressed. Every so often it was okay, but the food became increasingly inedible to me. I ran into a rare issue for them: I had to get as many sides as possible because I needed the calories, yet I was restricted by a daily sodium limit. Friends and family brought me unsalted pasta, and in my laziness I often pressed the call button to ask for turkey sandwiches. Because I did this so frequently, I dubbed it my "Turkey Sandwich button."As days progressed i gained more mobility, i found myself wandering around my room. Each day they'd tell me that if my bili count went up a transplant would be in my future, if it went down I would be homeward bound. By the fourth day, my restlessness gave me empathy for housecats.

That evening I propped my elbows onto the tiny bed table for the first time, and in that moment I realized a sad possibility-- this place could become my new home. On my last few days in the hospital I walked around the garden in the downstairs plaza. As I looked at the trees and the various memorial benches that were there to inspire serenity, I memorized my steps, imagining myself walking the same path for months while I waited for a new liver. At 28 years old, I saw a reflection of my insanity in the windows as future scenarios burned into the glass.

With a deep breath I wiped it off the glass and went with my friend back up to my room...

(1) Clostridium difficile [klo-strid-ee-um dif-uh-seel] (C. difficile) is a bacterium that causes inflammation of the colon, known as colitis.

(2) Pvt. Benjamin Buford 'Bubba' Blue is a fictional character from the book/film 'Forrest Gump' he is obsessed with shrimp and will talk about it ad nauseam.

Wednesday, September 24, 2014

not yet

I am presently being hospitalized due to high bilirubin, i'll be posting on my return.

i was admitted on 9/19 i hope to be out soon.

UPDATE: I WAS RELEASED! Yesterday 9/25

A Three part blog entry to follow. 
Because a lot of shit happened.

Thursday, September 11, 2014

Statistics, probably.

 I'm 28 years old, white, straight, and male, and none of that has any bearing on Hepatitis C.

With one exception: cure rates. Turns out more white men begin/finish treatment.

(I'd be willing to bet that the vast majority of those men are over 40)
That's a big fuckin' problem. Especially considering this: "African Americans comprise 22% of Americans with hepatitis C, but account for less than 5% of participants in HCV clinical trials."
http://cid.oxfordjournals.org/content/42/1/82.full (sometimes it's nice to have the source quote's source)
 I went on to the CDC website recently to see why... and two things came to my attention when looking at informational campaigns:  The people in the photos, and the target of baby boomers over anyone else. I decided to start reverse image searching the faces on their pamphlets, curious as to how they got all of these people who have HCV to take such dynamically different photos. To my frustration, I'd find that it's because they're stock images.

Sometimes the image is so cropped i could only find other ads, after this, i stopped searching out of frustration with the truth.

I had hoped that the individual posters might have better luck... but that was not the case

I understand why people use stock images. but...
Infographics have a limited space, and stock images detract from it
Could you imagine how much more genuine the material would be if that 'Faces ofC'
 statistically reflected the makeup of HCV infection across the USA... Photos from real people, who have HCV are so much more genuine... or at the very least as the face of  Hepatitis C in their ads.
Also, the CDC literally has all the info at its fingertips. How it can maintain this level of neglect, I'm not really sure. It's been over two years on this HCV testing campaign began which has received no boost in attention. With so much more information out it would be nice if campaign fliers were relevant.

As you can see here it's been a while, They don't update their resources...

There is a large focus on the Baby boom generation, in fact it's the only area where the CDC chose to focus its campaign materials.
Which means that when people see infographics/campaign resources from the CDC they'll believe it to be an issue for those born from 1945-65. With a campaign name like "Know More Hepatitis" i expected more.

It does have two other pamphlets which are on the CDC/Hepatitis site... which target Gay/Bisexual men
(actually doesn't recommend testing for certain scenarios) and Convicts.

This is an informational campaign! It means that everything here, ALL OF THESE MATERIALS should use every nth of power they have to INFORM.

Hepatitis C information must take a mass appeal approach. I don't mean generic, i mean inclusion. Presently the support structure is beneficial for me, a white male in the baby boom generation with adequate health care provided by my job, in that i have access to the doctors, the treatment and the care required.

But I'm not a boomer, I'm 28 and I obtain insurance through Covered California, and it was months of back and forth before they finally settled on giving me 1/2 a treatment. There were probability benefits to the 12 week, but the larger reason for not doing 24 weeks was that it simply wasn't covered, facts i realized into the treatment.

This is everyone's fight, and a general dialogue of a universal struggle will help paint a more constructive picture.

The idea that ANYONE can have this. While the materials say it doesn't discriminate... the CDC campaign would indicate otherwise. If it doesn't discriminate then i must ask why target specific populations?

Because they're 5x more likely? because 2/3 of those incarcerated are infected? Because anal sex is more likely to lead to a blood to blood transfer?

No need to worry about forgetting "specific populations" in an inclusion campaign, it reaches out to everyone on a more personal level because unlike the CDC's material, the virus doesn't discriminate.

Get Tested.

Thursday, August 28, 2014


Weightless, I am. Moving without effort, soaking up it all. For I float mid air because the ground reminds of uncertainty, effortless with motivation, just movements without cause. Soak it in because for a moment I held onto prosperity, and it rests on stable ground just out of reach. 
I'm a little horse from conversation. Return my reality to anticipation. Patience tested to the max, can't turn it down. Hope is the volume I speak.

With the intense emotional news that hides in the ringing of my phone, I can't help but wonder how much less interesting my life would be if I never answered the phone.

Two days ago I received a phone call from my Doc. typically if I get a call from the doc it's because something is unusual. This call would not disappoint. I sat hopefully waiting to hear congratulations on a second zero. She informed me my viral load under 400 was undetectable, but there were other tests that require me to come in a month. Unsure what to make of this I waited. I accepted the fact that I would have a real answer in a month, since I'd have to wait until October for the new RX anyhow, it didn't bother me much. Regardless of my acceptance of the uncertainty this brings about, it still feels like I've been emotionally winded.

I was curious if she meant an antibodies test, which would surely be positive. As once you've had HCV at any time in your life you'll test positive for the antibodies. It's like any virus in that sense.

It's Thursday, today. I had a routine MRI to check the state of my liver, the regenerative nodules, and if I have cancer. I just parked the car, and my phone rings. I answer the phone and put it on speaker. It was my doc again.

Twice in a week, is generally not a good thing.

She gave me the MRI results, and thankfully no cancer! But my regenerative nodules are still doing their thing. Whatever that is. I asked her for some clarification on my blood work.
My under 400 is undetectable, however my under 15 still persisted. 

What does this mean? How is that possible? why doesn't this make sense? What is this new RX?
-it means that the results are inconclusive regarding the success of my treatment, next month's blood test will determine if I am up for another treatment. The likelihood of me doing a fifth treatment is growing at a distressing rate.

-Re-infection is the cause of most relapses, while I may have been vigilant regarding using only temporary toiletries, it could have easily happened.

-It does make sense, it's like looking at a group of a hundred people from a mile away, vs. from a hundred feet away. the closer you are the easier they are to see.

-the new RX is a Giliead's answer to Olysio: ledipasvir. it's my understanding that it is to be a once a day pill.
The last few days have also brought back a resurgence of my ascities. My feet and calves swell up stretching the skin, while the rest of me balances out the water retention giving rise to the illusion that I've gained about 25 pounds.

With all this waiting and uncertainty i close my eyes, and listen.

I've always found that music, helps me find tethers to reality.
Presently the song Wasting Time, is stuck in my head. 

So, for now I wait. I'll walk ever so slowly toward my goal.  
Solvitur Ambulando.

It can be solved by walking.

Wednesday, August 20, 2014

Finally! Yes!

This is it. I'm done with em.

My meta(four)ic movie treatment

Today is not my last day of treatment.
My blood panel last week did not include viral load, as I'd hoped, so I anxiously approach Thursday, the day of my final blood test. and Friday, the day I'll get my results.

Today, I will no longer be taking the RX for my treatment. But since the zero happened my body has begun an entirely different process.
Let's go through the film of my history with HCV to see where I am presently, shall we?

Act 1
Set up: Born, happy health baby grows up pretty normal until middle school, finds out about plot.
intro scene: C-section, birth complications but ultimately born a 10. (set stage for resiliency from complications)
Plot point 1: Doctor's visit, Hep C introduced as main antagonist.
Act 2
Mopey teen, goes through ordinary teen things with added twist of lack of motivation slowly becomes more and more positive finds motivation in relationships with friends.
Plot point 2: Begins first treatment, hope is crushed, engagement fails, low point.
Act 3.
Finds new purpose in rebuilding, fosters the relationships lost contact with. grows physically and emotionally.
Plot Point 3a: Second failure.
Doesn't lose as much steam refocuses same as previously growing more, setbacks appear but worsening symptoms dwarf setbacks.
rebuild again, better than before.
Plot point 3b. hospitalization and worst near death event yet. failure of third treatment.
Act 4.
Symptoms worsen, hope carries forward. even closer relationship with friends and family. epiphany and motivations, struggle against the final symptoms indicating am HCV liver transplant is imminent.
New doctor, new RX, new attitude the realization that I can't do this alone, and that I'm not alone.
Plot Point 4: RX combats the worsening symptoms, treatment brings the first zero.

And now we're here. in the second half of that turning point. the crucial climax approaching. I have one zero, I need two more. With my Tic Tac Toe, I'll be cured. and thus the final climax of my HCV movie life will be complete. The falling action from there, will be the MRI, the tests and the healing process over the next two to five years.  the conclusion is one of those trail off dramatic endings when a bartender asks me if I'd like a drink, and I, holding back a proud laugh, smiling say "Sure, one drink won't kill me."

What I'd like to avoid is what movies have been doing lately.
A sequel. The problem is that my likelihood for that is high, due to my increased risk of liver cancer.

So when I say today is not my last day of treatment, I mean that there is much left to do. While this chapter ends, each time I test my viral load, will determine if this movie has a happy ending, or just one of those happysad endings.

Wednesday, August 13, 2014

Right now, how many days left?


Seven, Seven pills!

"I know you're tired."

Since receiving the news about my zero, I've spent a lot of time telling people the good news.

And that it's not quite cured, but a damn good sign of it.

Celebrations, Comic-Con, and lots of Family events have been the major focus these past few weeks.

My blog has felt a little lacking lately. But in spite of having lots to do, I've had time to write.

So why didn't I? It wasn't a lack of feeling connected with the community, or sadness, the rigors of degrading health or even trying to really grasp what a zero viral load means.

It was that for the moment, I was tired of the topic. I spend much of my time explaining to people what's going on with treatment, and I appreciate them asking. But when you get the question 10-20 times a day for months...it's tiring. While the success is something I love and am incredibly excited for, explaining HCV is never pleasant. Most people close to me, know what's going on and don't ask so frequently, which I appreciate. But when I see people who know me as an acquaintance, it's usually the first question. Whether they verbalize the question or not, is a whole 'nother awkward dance. I don't mind answering, but it's like when you find out someone speaks another language. Don't say "hey speak some of that cool language." try "Can you tell me a story, about..." and give a small story prompt. It's more genuine when you're interested in the topic to have invested more than a flash of a thought. So instead of asking "how are you?" or "how is treatment going?" ask about a symptom, a side effect, something they're concerned about or ask about how they're following through on the next stages.

Now I'd like to talk about something most people generally aren't comfortable talking about, let along how HCV impacts or relates to it.


My knowledge of HCV has expanded has I've grown older, but I've always been careful as far as my partners are concerned. It's a very sensitive subject, because not only is it an intimate expression, it's also risky. In every relationship I've had I've explained the risks to them, some have felt it was too great a risk to even association with me and left. A few very hardy women have stayed the course and taken the risk. While not an STD, it is possible to spread HCV during intercourse. The bigger risks were the unseen ones. If I shave, it cuts the skin, and raises the risk of transfer. Sharing a deodorant stick, or any personal item is completely out of the question. The trouble comes with small cuts, or bruises often ignored in the heat of the moment. They can't be with HCV, it's an odd vigilance, but it's necessary. But one of the first things I hear when I mention HCV to a new person is how it relates to sex. Essentially, if you think Fifty Shades of Grey was barely even touching on the reality of rough sex, you should be cautious. Rough sex is a large risk, some of you are probably thinking to yourself... "duh." But rough sex isn't always bridging into whips and chains, sometimes it's just intense and passionate. It's always my biggest fear, transferring this virus to anyone. And if it were to someone I love, it would be devastating. With each of my relationships I disclosed as much as I knew, which in my younger days was not much in comparison. But recalling what I disclosed and to whom brings me to realize that there were pertinent facts I left out, not realizing the risk. What I realized was that while I may have explained the situation, seldom did my partner look much into it. A frightening reality I now realize. It's actually amazing what some people seem to not care about in the heat of the moment. If your partner has it, and you're reading this... chances are you're doing some research, but do more. Some people who have HCV know little or nothing about it. Knowledge is power. If you're involved with someone there is a 1/100 chance they have it. Before you get down, get tested for both STDs and HCV.

And now for the other side of sex.

What? What other side? The path up to sex. There are a lot of preconceived notions people have regarding HCV. A long time ago, while out downtown with my girlfriend and friends, we were separated and became two smaller groups. A new friend, my girlfriend and I were in one group and everyone else in the other. In talking with my new friend he inquired as to why I wasn't drinking (Never ask this question, it's rude). I responded "I can't drink. I'm the DD."

There's a pause there, it's not I can't drink because I'm the DD, it's I can't drink. I'm the DD. implying that there is another reason I can't drink. New friend may be a little tipsy but he figured it out, he's pretty inquisitive "why can't you drink?" he asks.

Rather than play out the "well I have liver cirrhosis, shit kinda sucks a bunch." I just explain to him I have HCV. and then explain the symptoms, the outlook and the transmission methods in brief. (I could give you a one minute breakdown of HCV I have said it so many times, do you see why I'm tired of talking about it sometimes? anyway...) He then, concerned, turns to me to remind me the transmission methods, but confuses them with Hep B. and then confuses it for an STD... I correct him, several times. After about seven times of this, I walk away from him and I navigate social situations to avoid conversation with him. In the end he realized what had happened, apologized and is still ashamed of it. Why I talk about it here has nothing to do with him, but rather the fact that anyone could be so confident and so wrong... only helps perpetuate the two major themes of this blog entry. Sex and the exhaustive nature of explaining HCV.

OH yea! I almost forgot about me for a minute there.

Since finding out about my zero, my symptoms have been decreasing overall. Joint stiffness and pain have become the predominant themes in the final weeks. I am very excited about the prospect of ending treatment soon. The blood draw I took today will hopefully repeat the zero I had previously.

For now I wait. Bound

Friday, August 1, 2014

It's a Treat meant for me.

Just the other week i hit the halfway point. It's a milestone for a number of reasons. The first being that i've never made it to a halfway marker. Previous treatments have had either no or ill effect and provoked me into dropping out early.

The second being the ease

Comparatively this treatment is the easiest and smoothest one yet. While i wait to find the efficacy my best hopes are pinned on this never-before-seen RX production in HCV care. They're coming out with a new RX in October, it's another one of Gilead's Manhattan projects.

But what does being cured mean? How has having a  zero viral load physically affected me?
Psychologically  it's a huge deal, but let's get down to the day to day bullshits. The cirrhosis in my liver is the virus' gift to me for the remainder of my life. The scarring will never truly fade. My hopes are for the remainder of my liver to recover to a state where i no longer require transplant.
This would require the chunk of a liver i have that isn't necrotized, to heal. Healing this much of my liver creates room for a new problem.


If you don't know how cancer works, or have some confusion on the matter think of like growth. Whenever regrowth happens there is risk for cancer (there are lots of other sources, but this is a big one), when the cells reform sometimes they're not perfect. Nature miracl...fuck-ups, really. A cell has this cool map of how to replicate, but sometimes it's like "nahhh fuck directions i got this." And then it just runs around replicating even stupider variants until some other cells notice and go "Dude, it's called RNA, use it." Of course the dumb cell in response is gonna be like "Nah man, the man tracks me with that shit, NO PAPER TRAILS, WOOOOO." And then the other cells eat him, in a sense. Well, it just gets ripped apart for material. Either way, this regrowth my liver will be doing is on a massive scale, so there is lots of room for error. I have a very large number of something called Regenerative Nodules. These are one of my largest risk factors.

So, two years down the line I've avoided much of my risk to cancer, what's happening with me?
No one knows.
No, seriously.
HCV is creating this weird situation about an organ we know little about.
My mom is actually part of the study of how an HCV liver regenerates post treatment.
I , too will be part of the study for regeneration.

But these are the things we know:
-My liver will take years to fully recover
-I will never have a fully functioning liver as other people do.
-Even with all of this done, i may still need transplant later in life.
-My liver will function at its best within between a year or two.
-No one is sure how my body will treat the virally damaged cirrhotic tissue.
-My jaundice, ascities, encephalopathy and everything but breath restrictions will slowly return to a "normal" level.
-I will forever be short of breath, the respiratory damage is presumed permanent, thus keeping fatigue a major factor in my life.

That being said, this treatment is fantastic, not only because it's put me on track to be cured but because of what it's doing for my liver function.

In the past it was like i was going to Golden State Gas in Poway, ya know... 20 cents cheaper since it was 10% water. Now i'm going to a real gas station and getting the fuel i need, the damage has still be done, but the car runs a lot smoother.

Wednesday, July 16, 2014

Shut up, shut up, this is my favorite part of the movie!

By the numbers.

It was 2:46PM, July 15th, 2014.

I was sitting on my couch in my apartment talking with a friend. The phone had been ringing constantly, calls from friends back in town mostly. This call came from a number I didn't recognize, It was 2:46PM, July 15th, 2014. Our conversation had been interrupted a handful of times, I normally would have let the call go to voicemail. But Something was different. I told my friend that I needed to take this call, that it was probably the doc. I hadn't scheduled my next MRI and they'd been calling with some frequency to get it done, so it wouldn't have been out of the ordinary.

It was my nurse, she called to tell me the results of the latest blood panel. They'd been making sure my vittles were on the level, since I somehow managed to keep forgetting to take my magnesium. Since my last blood draw was a few days ago, I was hopeful this would be a call I'd been waiting for. She began, "The results are in from your last blood test, and your magnesium levels are low" a low sigh conveyed my plight of perpetual hold she continued to remind me about how I needed to watch them, and then she said something I'd been waiting fifteen years to hear.

"... your viral load is undetectable."

I was beyond elated, my ears perked up, in disbelief I asked her to repeat what she'd said.
With a look of near shock, we ended the call, and I informed my friend of the news. And for the next ten hours I would tell more friends and family. My mom lost it, in tears, it was hard to get out of her hugs. My dad, as my friend put it, "genuinely smiled and was happy." Which for reference, my friends never see my dad smile, except at his own jokes.  Each person I  told I saw their face light up bright, high fives, fist bumps, hugs. I reminded each of them of what this means.

In all of my treatments, I've never been able to reach this point. This point had always been just out of my grasp. What being undetectable, or Zeroing out, means in terms of viral load is that I no longer have the virus active in my system.

It does not mean I'm cured...yet. What it means is that there is like a 97% chance I'll zero at the end of treatment in five weeks, and like a 96% chance I'll stay zero by SVR12 (SVR12 is 12 weeks post treatment). At that point it's like a .0004% chance of remission. So while it doesn't mean I'm cured, exactly, it's damn close to it.

To celebrate freedom, and being out of the danger zone, we're going to Kansas City BBQ, and watching Top Gun.
Because we're too close for missiles, so I'm switchin' to guns.

Friday, July 11, 2014

Raising the bar on your expectations.

See that x/100 goal? that's because HCV outreach goes nowhere. even though MILLIONS suffer from it, There's a stigma.

So here i flow,it's poetry slam time.

Most people are afraid of the reception, not just the kind of connection.
Drop the cellphone for a minute we're talking about how you receive this packet of information.
Laced with connotations of drug use.
We've got all lines busy here trying to reach out to you, trying to scream to the world.


and stopping this son of a bitch in its tracks, get the right drugs involved. Cure rates so high you'll swear you've smoked something.
But...It's a game of telephone isn't it?
Tell a friend.
Educate. Everyone
Eliminate. The stigma
Emancipate. Those burdened with hepatitis.
So let's gets some 4G LTE connection from this tower. Spread the word faster than the virus can.

These bars of a fear are a jail cell, turn the bars to signal.. 


Am i raising the bar? No, Raze the bar. Drop the bad habits: alcoholism feeds hepatitis, cirrhosis, liver cancer. How can you be a liver without a liver?  Did you have your phone on silent?

That's what they call this, Hepatitis... the silent killer. Turn your ringer up, we're laying fiber before fibrosis. Google that, upgrade this connection, i'm twitterpated with the cure.  So lets get social with this network, if we all give this grid a lil shock... Then we're gonna leave a thunderclap.

Heh, Joke's in the end.

Oy! has it been a while since I've written a blog entry, well as you'd expect I've been a bit busy up until today. Independence day was festive and fun, I managed to spend some time "in the sun" albeit it was wearing a heavy coat of sunscreen under an umbrella and fairly covered up most of the time, but still!
I must say, exhaustion is still the biggest issue I deal with as a side effect of this treatment.
I came upon an old favorite, one I suspect came out of a very long day for me. A few hours in sun/shade and a going on 14 hours, I was more than exhausted. I began to get emotional over small things, it became overwhelming even really talking with people. I'd felt social anxiety issues from treatments past, but I didn't expect this. I suspect it had to do with pushing myself, but it was hard to hold back tears as I sat in semi-isolation.
Luckily for me, I've gone through worse. I learned to put on a mask when I was in treatment and working with kids. I couldn't let them see the worthless rage, the irreverent despair and the dashes of utter panic. So that night I swallowed my sadness for the time being, and kept on.
I've been trying to do more of a regular daily schedule, so far it's been rough. I've lost a lot of motivation, for seemingly no reason. I suspect my encephalopathy is beginning to return. My ascites are slow to return, but still here, so back on my balanced meds I go.  I am writing this, not having taking those meds in about two weeks now. So if my sentence structure seems more disjointed, it's no surprise why.
In exciting news, I've been featured on Hepmag, and I've got a few blog entries up, also mystory should be up soon! So if you'd like some more back-story to my history of having HCV, it's a decent bit of reading.

Last night put me at the 6 week point! I'M HALFWAY THERE!!!! Bon Jovi understands.

I also took my blood test yesterday. When you've had your blood drawn as often as i have you know the drill, luckily I'm the easiest stick any lab tech or  nurse could ask for. So long as I'm decently hydrated, my veins are visible from six feet away. 

So when I get a shitting stick, it pisses me off a little. ESPECIALLY when the prick (hehe) happens to stick the needle in, THEN MOVED, HE FUCKING MOVED THE NEEDLE. WHY, WHY, WHY? The trouble is, having done this literally a hundred times before I know a bad entry. He knew what he was doing, not sure why he had to be an asshole.  They'll be giving me my viral load on this test, I may know as early as this evening!
Punctual as always, the last few days have seen a resurgence of pain in my sides. at one point in time it almost felt like it was in my appendix. At least the pain wasn't in my index, a broken finger makes everything hurt when you touch it. My colon on the other hand hasn't been seeing the levels of distress it's been used to, it's odd to have blood in that region when you don't have a period.

Hopefully, this life sentence of HepC will see a break yet.  

Monday, June 30, 2014

The better purple team.

When going through my paperwork i noticed a form for the q80k Polymorphism, it's a mutation that limits the treatment choices you can do. It messes with the efficacy of Olysio, by knocking it down 20%.

Quickly reading this before heading out for the day was not a wise choice, because if i've learned anything from this virus, it's check, double check, and then check it again! After freaking out for a few hours while my ascities began to return i was having a hard time focusing on doing much of anything else today.

I got home and hit more websites, reading dozens of abstracts and articles looking for anything... and then i found it.

There is an exception. When Olysio is taken exclusively with Sovaldi, it does not change the efficacy.

A sigh of relief, to say the least, as i wait for my  results from the 4 week blood test.
To more good news! I'll be doing some blogging for Hepmag.com, so check it out! it's a great resource to learn a lot about Hepatitis ANNNND it has a really active forum!

The liver life walk went fantastic. we had over twenty people come and raised over $500.00!!!!