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!!!!

THANK ALL OF YOU SO MUCH FOR YOUR LOVE AND SUPPORT, TEAM WHY NOT ZOIDBERG KEEPS ON GROWING!!!! TWO YEARS IN A ROW. NEXT YEAR LET'S BE EVEN MORE AWESOME!

Good News Everyone!

I'm incredibly exited today as I'm on WEEK FOUR OF TREATMENT. A lot has happened in the last week, but two liver specialists in one week will tend to do that.

Let's start at the beginning of the week. Early in the week I met with my transplant doc, she had the results from the bloodwork I'd done on Friday as well as the past few weeks to show how I've progressed.

ALP is down

ALT is down

Bilirubin is down

But what does that mean? Besides that boy needs therapy? It means that my liver function is returning to a state of normalcy. Something I haven't known for years. It means my brain is operating better, my organs are less burdened by the wretched fuel my liver had bestowed upon them in earlier times. And most importantly it means that the treatment is working. 

I'd post the numbers, but I'll save that for a more technical post, I'll even make some charts for your inner data nerd.

One number which is a serious indicative factor of the progression rate of the virus is the viral load. A number I have yet to receive, but will know of it soon.

In the last few days the state of my liver's functionality has allowed me to stop (or at least pause) taking my diuretics and lactulouse. My body is holding on to vittles more proper like. I can engage others in conversation on a scale I'd nearly forgotten that I had the capacity for. In a weird way I liken the difference to Charlie's transformation in Flowers for Algernon.

While my body is functioning on better fuel it doesn't mean that the liver damage is healed, it means that the process is no longer as inhibited. it means the treatment is working well. My symptoms are all very present, and remind me when I get too sure of myself, that they are still a force to be reckoned with and not to be taken lightly. The side effects however have lessened to some degree, my photosensitivity is slowly becoming more bearable and the headaches and side pains more predictable. 

Diet has also played along well with this. I've been avoiding high salt foods, with the help of a friend I even found a no salt bread at Sprouts. It tastes a little rougher but it's not that noticeable. My exercise routine has been irregular, but still it's as intense as I can make it.

I learned two pieces of information on Tuesday from the transplant doc that were rather puzzling. The first was that my treatment was 12 weeks, not 24 as I had originally thought. 

The reason for this is a little complicated: 

For a decomp  Cirrhotic patient, such as myself the efficacy or likelihood of success on the 12 week program is about 86%. for a comp non-cirrhotic patient the efficacy is about 94%. At 24 weeks both patients, cirrhotic and not see about a 94% efficacy rate. Since I'm ordering off label(not using one of the FDA approved combos) my insurance only covers so much of it. The docs tell me I'm on the 12 week slot. Here's why this is better while it initially may seem to suggest otherwise.  There is a new partner drug to come out in October which will be the FDA approved partner to Sovaldi, both drugs will be manufactured by Gilead. So if I were to fail this treatment another will be more quickly available to me while on the 12 week treatment as compared to the 24. 

hmmm...that's a little complicated... here's the TL;DR of it 12 weeks is better because if I were to fail then a new treatment is more readily available and with higher efficacy AND FDA approval sooner than if I were to take 24 weeks. 

Transplant doc also told me a seemingly odd piece of information. That drinking two cups of coffee per day is good for the liver. 

Okay, I should mention right now: I hate coffee. I hate the smell of coffee, I hate everything about coffee. 

but since learning this I've been using my French press to down two cups a day. where I begrudgingly sweeten it with Hazelnut syrup, almond milk and agave nectar.

Could I make that sound more hipster? Oh I guess if it were Turkish coffee. (that's next week, as I'm trying lots of blends to find one that is the least repulsive. Go Big or Go Home, amirite?)

My meeting with my GI this last Thursday was equally as fruitful, not only did we confirm the 12 week situation (I had mistakenly thought it was 24 week due to multiple conversations on the topic leading to both conclusions) but that I'm responding very well to the treatment.  I did learn of something still troubling however. My platelet and hemoglobin counts are lower than they should be. I'm borderline anemic, which helps explains why I'm more tired often. 

Overall this treatment is doing amazingly well, not only is it more bearable, it's working. 

but I've been here before, the triple therapy worked, at least initially. I shot down from a 9 million viral load to around 200, while incivek ravaged my body it did assist my progression against the virus. I hold onto hope and I believe this will work, but I understand and humble myself to the potential reality of failure.

This, is how I've remained resilient, while all of this good news is fantastic and if it holds, exactly what I want... I must constantly prepare myself for either situation, so that I may be ready for my next trial if need be. But in the mean time, this spoonful of sugar helps the... Coffee go down.

ALSO TOMORROW, SATURDAY IS THE LIVER LIFE WALK!

Linked

The Liver life walk is coming up! Please join or donate!
We've got an awesome team but a few more heads couldn't hurt!
You can also show support by picking up a shirt!
Or feed your inner slacktavist and change your profile picture (inspired by zoidberg)

The walk is this Saturday, we'll be gathering at around 8am.

The Tribble with Troubles

There is stigma, a strange perception with Hepatitis C, it’s more than just a lack of knowledge on transference and what it can do. Like any invisible disability, you don’t see it, so you can’t tell if someone has it.

I have felt the leer of judgment and fear more in my life than I would ever prefer any human being should, one comes prior to finding out, and assuming that i'm faking my disability, the other comes after they find out, trying to keep their distance. That illusion is like a tribble, at first it's unsuspecting, but feed it something, in this case fear, and it multiplies so fast it eats all the grain in the starship. if you're lucky that grain will be poisoned and you'll find a Klingon spy.

The passersby, use their eyes and believe me able

Because I’m “well adjusted”, beside them at the table.

When I fall short of what they've grown to expect

Instead of empathy, I lose their respect.

A melody of misplaced malice and malcontent

Fuels the silent rage born from the ignorant

Unkind words burn and fly at my direction,

Born this way, I say as if I had some election

The truth comes out and builds up walls of fear

Justifications, “just if” occasions were all they want to hear

A temporary respite they’d rather me be worthless

Keep indulging their self glory with their dejected righteous bliss

But now they’re on the defense for reasons here twofold

Grew up this way, it’s not their fault, just doing as they’re told

Some drop the wall of shame, and embrace that fear laid wall

Embrace humility, and ask me once, “is that all?”

Not making light, they’ll reach to share the pain

Understanding builds us up and friendship is our gain

Others aren’t so lucky they’ll live life so jaded

They treat me fine, and subtly remind that I’m tolerated

Just if I were cured, well then they’d treat me right.

Just a shame they say I had to see them in this light.

Their true persona weak, in need of love and charity

I pray they find it soon, but they won’t find it from me.

The key to respecting people with invisible disabilities is really pretty simple. Treat everyone with the respect they deserve, regardless of how they appear. My last line of the poem does paint a slight modification to that idea though.

 If they’re a shallow, self righteous douche bag who treats other people like sacks of shit, whom you’ve had open communication with to attempt to resolve the manner in which they conduct themselves and their head is just too far up their own ass, well… just never associate with them they're probably a Klingon spy anyway. 

The blue sky is where you imagine and clouds are the interceptions for the mind to fixate. The clouds are what is, but the blue sky is what has yet to be.

Recently, I came across a very familiar feeling quote from the great Claude Debussy.

   “Music is the silence between notes.” His reference to the negative space of things capturing the moments reminiscent of my view of living between seconds, this brought me to listen to more of his music again.

   If you haven’t heard (or heard of) Debussy, you have, because he’s one of the most influential composers in French history, and goddamn was he brilliant. Often I find myself finding solace and inspiration in music and film. Mediums that seek to exhaust the mind with so much information at once that you must listen, watch, repeat over and over again, each time discovering more beauty in it.

   Because of what you didn't notice before, the interesting thing about repetition is that it isn't hearing the same thing over and over again. Because each subsequent time you hear it, you've heard it before, it’s compounding. It’s shouting to you to listen between the notes, the words, the sounds. To see the negative space, and know that it’s more than just the potential but that it allows you to appreciate that imagery in front of you.

   So I implore you to listen to music over and over again, watch movies on repeat, not because you enjoyed it the first time, but because you’ll enjoy it more with each time. And listen/watch for that negative space, the gap between. If perhaps you’re unfamiliar with Debussy, or think you are, I've attached a few compositions of his.

Clair de lune

Afternoon of a faun

Images pour orchestra

Covered

     As medical bills roll in from all directions,  billing offices often lump payments together. For instance, I had two MRIs, three months apart, they held off billing me for the first one until the second one came about. Meaning two $90.00 payments over three months becomes one $180.00 payment. This isn’t uncommon. It’s harder to pay a massive bill, rather than smaller bills over time. Another issue that commonly has come to my attention is double billing. Often a hospital or third party will knowingly double bill you on the assumption you don’t know how your coverage works. Ambulances, Labs and even tests in the hospital are billed to the patient when the real bill has already been paid.  I’ve had arguments with billing offices regarding this.

   But that is just an annoyance in the healthcare debacle. As for the goal of all of this…Treatment

It’s going well. Direct sunlight for extended periods of time gives me intense headaches, I go through waves of energy now, where I’ll be exhausted for hours, then fine for a little while. The sunlight does  help create the exhaustion. Only furthering the shift in my sleep schedule to prefer nights. My skin has dried out a lot, all kinds of advanced repairing lotions have become the norm, a few times a day. In order to help my energy levels and my overall health, I’ve made some changes in my diet. Greens, cheeses and lean meats now occupy most of my diet, essentially I’ve cut out most pork and beef (save for the occasional In-N-Out burger which also kills my sodium intake for about two days.) after eating most meals, I often feel bloated and full, a discomfort not encouraging my massive caloric intake requirements. Two weeks in, and I can easily say this treatment is so much easier than previous ones.

This is the lovely Prayer Blanket my Uncle’s church made for me. Thank you all very much St. Lukes Episcopal!

A REMINDER FOR THE LIVER LIFE WALK, IT IS JUNE 28TH!!!In a little over two weeks we walk to help those with Liver disease. Sign upfor the walk, donate, or

Buy a shirt (5 dollars of every shirt bought goes theAmerican Liver Foundation.)
All you need to do, if you'd like to order through this site is select the shirt type (with the purple design on it), and click next step a few times until ordering. everything should automatically work.

The Design is IV, with the words Solvitur Ambulando beneath. Which means "It can be solved by walking"

Order now if you want your shirt in time!! (SERIOUSLY, anyone who orders after THIS WEEK won't get it in time)

Easier to swallow

I noticed that the CDC's website had a lot of useful information, but the format wasn't so readily consumable.

So here's an infographic i made for when you find out you're HCV positive.

There's probably some spelling errors in it, i wouldn't be surprised.

I will be making modifications to this and posting it elsewhere soon.

It’s been…. one week

Woohoo! Only 23 more to go!  I have yet to perfectly balance all these meds and diet, but I’ll get there. IT’s harder predicting my energy levels, I’ll have random sudden bursts of energy that put me to a normal level, and then moments later come back to being exhausted. While generally I can tell when I’m most affected, it now appears more moot than I originally presupposed. One major truth remain, my muscles get tired a lot easier.

On the bright side, I have a blood draw and GI appointment this Friday, so we could see how quickly this drug is working. I intended to attempt a road trip up to San Francisco to see some good friends I haven’t seen a while, and visit my girlfriend but I quickly realized two factors that would make this impossible upon starting treatment. The first was that realistically I don’t have the option/freedom of traveling alone nor could I last more than 2 hours in a car without needing to nap for a break and restroom.

There is a mental fog I didn’t really notice until recently, it makes things more confusing. I have a hard time dealing with obstacles properly. I have a shorter fuse, partly because I’m overwhelmed by my senses, and partly because of that fog. It’s frustrating because there’s little I can do.

But in time I’m certain I’ll find a way around it, I’ve got good friends who understand and make this easier.

Quarter million dollar RX combo

I recently wrote a summarized version of “My Hep Story” that I submitted to HepMag.com. This is a very consumable summary of my family’s battle with this illness:

The italicized was omitted from the submission

--

It was summer time, and I was going into seventh grade. After a day of playing tennis and drinking sugary drinks I went home to make a discovery I had not thought possible. Sprinting to the bathroom, I had little for warning of what was in store. As the “iced tea” colored toilet bowl filled I understood that this wasn't normal, my dad told me we’d need to get that checked out.  Fast forward: some new doctors, some new tests, was it his kidney? No, his spleen? No, his liver? Yes, what did the biopsy say? None of us really knew what to expect when we met with the doctor that day.  Little was known about HCV among generalist doctors at the time, and the information he explained was minimal. The room went quiet as my parents probed him, “…at his rate, it isn’t unlikely that transplant at age 30 will be a reality for him if he doesn't clear the virus. And even then he’ll re-infect the new liver.”

Sports were gone; my physical activity spurned the event, so I was put to a system where I could not over exert myself. But this isn't just about me, because I know how I got the virus. The doctor asked my family for blood tests, and within a week he called us in. My dad? No, my brother? No, my mom? My mother’s hands fell to her face as she was told the news, we were the same genotype. I am a vertical transfer. Within months her optimism would later sew the same brightness within me, but not today. My mother would go on two treatments while I was in school. Each treatment put a glimpse into the insane side effects and pain from non-peg interferon into my reality. This wasn't just my mother’s pain, it was to be mine.

As years passed, I too began treatment. At eighteen, people weren’t prepared to see my face, I stood out like a sore thumb in a GI so filled with geriatrics that they called sixty year olds, whippersnappers. My first treatment took months to get going, and it took about as much time for them to give me my first new HCV label: Non-responder. The treatment wasn't just tough; it dug at my fiancé’, my friends, and my job. It was my own personal hell, each month the results teetered around the three million (viral load) level. The failure of my treatment was hard on me, coupled with the ending of my engagement and the news that I would need another semester at school, I lost myself.

One of the biggest things that helped me refocus was my group, at the site where i worked at the time, they were some of the strongest personalities and rather chaotic group of kids. Helping them, watching them improve over the few months before their promotion was one of the most gratifying things i'd felt in a while, Seeing how, in spite of all their arguing and rather bizarre antics, they worked together. Their compassion for one another inspired me, alongside their struggles and accomplishments to this day have been one of the single biggest factors in what drives my passion for working with children. but at the time, it helped me find myself.

I refocused, began eating healthier, working out more, and within the next year, a new job. After two years, another treatment would reinforce my title as a non-responder. Internal bleeding and new symptoms began to illustrate my decaying liver. Just as I had done before I refocused, my next job was accommodating to my situation for a corporate job, and as I started it I saw my mom go through the roughest treatment yet: the triple cocktail (Peg/Riba/Incivek.) Two transfusions would keep her going as she zero’d out and was cured. I was elated, not only because my mother was clear of the virus, but because it meant that I would have a path myself. I prepared for months ahead of time; With the help of a dear friend, I was in the best shape I’d ever been in. Within a month I shot from over 9,000,000 to just 220. I felt like I was dying, but the results were fantastic. The next nine weeks would keep me at less than forty, and as the veins in my throat burst, not only would I lose a third of my blood within a few hours, but any hope of continuing that treatment.

Last year the symptoms began interfering with my brain; encephalopathy, ascites, jaundice, my esophageal varicies and portal hypertension had new company. As my MELD went up, a new treatment needed to happen soon.

If I am anything, it is persistent, I have recently begun my fourth treatment. During my last treatment I began a blog of it, keeping my friends and family informed, and hoping that it will help those who are going through similar troubles. I hope my story here inspires and helps others.

 --

Day Six

As I approach day 6, I’m beginning to understand and deal with the side effects.

The most irritating so far, is the exhaustion. It appears to have amplified my deteriorating symptoms. The problem is, that I’m restless…I can’t sleep, and it’s harder to focus. To control the GI slip n slide, I can balance my lactulose to ensure that I don’t have a constant stream, or suffer the opposite. Both of which cause a decent deal of pain at this point. My sides ache and have more sharp pains than normal, it’s as if someone just walks by every so often and stabs me in the liver.

My senses are enhanced again, increased photosensitivity, and I couldn’t have imagined this one, my eyesight is improving a little.

My energy levels do come to near a normal level as I approach 8pm (when I take my RX) and rapidly descend until about 10pm.

I’m able to do more and more each day, which gives me hope, as I get used to the medication.

I wake up each morning with a throbbing headache; the photosensitivity makes what little light enters my room feel like spot lights illuminated targets for my irritated gaze. All of my senses are more enhanced, however nothing like past treatments, thank god. I’m just tired, a half hour or so will help me drag myself out of bed, unless I am woken by an unwelcome surprise. When that’s the case I sprint to the bathroom so fast the entire procedure wears me out so much I typically have to go back to sleep afterward. The treatment enhances the symptoms from my deteriorating liver, now preoccupied fighting at full steam. So balancing what I eat is more careful than I may make it seem at times. Hundreds of calories comprise my breakfast, as I will pass most of it; I have to hold on to what nutrients I can. I try and do as much excercise as i can, a few minutes of free-weights, 5lb and 10lb when i'm bold. It isn’t pleasant, it isn’t hell, it’s just constantly inconvenient. 

Resources, i mined too much vespene gas

The treatment i'm on is rather unique in the HCV community, why? because it's still got some kinks.

So why am i doing it? Well, mostly because at my rate of...lets just call it shitty liver, i'm en route for transplant.

Transplant isn't a solution, it's a very very very very very very very unfavorable situation. Transplant doens't cure anything, it just gives me a new liver to reinfect, which given the fact that my body is already resisting it, means that it doesn't have a lot of staying power. 

BUT Transplant is still a necessary alternative, because well... the other one has a lot more verys, and a handful of angry and sad people if it came to that.

So lets talk about a few things you probably don't know.

First, the end result: being cured. Technically being cured isn't really the accurate term, the real term for it happens about six months of zeroing out (aka aviremia) post treatment. it's called SVR aka Sustained Virological Response

While yes i could actually be cured, that's years down the road because there is a lot of damage to repair. SVR is what will make recovery possible.

Damnit Jim! I'm a layman not a doctor. Treatment is a weird thing, different doctors have preferences on which drugs to use. The price of the treatments i had been on, has gone down dramatically for those treatments. Patent laws and sales numbers have driven that. but what about the one i'm presently on: Olysio/Sovaldi. Is it the most expensive HCV treatment? almost, there are more expensive combinations and depending upon your healthcare coverage most people may not get approved from these expensive wonderdrugs. It's been kind of a blind operation, operating on half of the knowledge, but now...

Well, this one just came out with some findings. 

It's about a hundred pages of reading, with about 10 pages near the end you should really look at, but the bottom line is this:

Not only does it work... it fucking rocks. the Liklihoods are the highest they have ever been. around 90%.

i know you've heard the 90% number bounce around regarding Sovaldi, but it's the combo that matters, and that's new.

Okay cool, so now i've got a 90% chance of beating this thing right? NOPE.

Unlike the sample size, i have a decompensated liver, like pretty bad man. 

What that means, is that i can expect a similar likelihood, but it's hard to say what will happen. my growing symptoms are a reflection of the condition of my liver. 

There are a lot of figures getting thrown around regard HCV (and i'm not talkin 'bout Pam n Tommy) the news latches on to those big numbers about people infected with little explanation, similarly locking on the misinformation because its good for headlines. If they're wrong they'll issue a redaction, on page 33b lower left hand corner. SOOOOOOOOOOOOOOOOOOOOO More like the Judd's lets build a bridge.

Curious about those crazy numbers you keep hearing about, how do they determine all of this? what kinds of  infection are there? How many deaths can be attributed to is?

Oh Dear! is that all? No, there's a lot more information out there but i urge you to get tested, and to have others around you tested. early detection means early solutions. HCV doesn't always do what it has done to me, in fact a good chunk of the time, it doesn't do shit for decades. Many Boomers i know who are/were infected, were moderate to heavy drinkers until they found out, some continue to anyhow. Yet, symptoms took decades to manifest.

The best way for you to get tested is to give blood. (they screen for it, and will notify you if you have it.) As a transfusion recipient, not only will the test be free, but you're helping a great cause.