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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!

Friday, July 27, 2012

Tres

Injection number Three! I've got 45 more to go! Not so bad i think.

Whoa ten minutes....a little longer than i'd thought...but then again it's hard to keep a thought going in a sentence. If you haven't noticed i don't edit the footage, it's raw for better or worse.

one of the big misunderstandings about Hep C usually is regarding not only transfer but also the types of people who get it.  A big misunderstanding about the virus is association, It's a general assumption that most people with the virus are  drug addicts, felons, or other society deviants.

I mean, i'm freakin' weird, but i got it through vertical transfer, through my mother. Who most likely got it when she worked in the medical industry back in the 70s.

And of course the big misconception: transference. Hep C is Blood to Blood ONLY. which means the only way it's an STD is if you're having some bloody sex on both parts.

Monday, July 23, 2012

Sleeping


The second injection was more challenging than the first but nothing unexpected. As the weekend has passed, it went better than expected, except the ass pain.

I have a hard time finding the words to perfectly convey exactly what this ass pain feels like, but it never stops. It does get muffled by other symptoms, this weekend I was especially tired and lightheaded. Under normal circumstances I would have suspected I was bleeding internally, but I’m on treatment so anemia is to be expected. Well… apparently in the cornucopia of things I consume in the morning and evening I forgot the one that lowers my blood pressure, thus slowing and halting the blood loss. Today I took off from work as sick leave expecting to be practically bed-ridden, and low and behold I pretty much am.

It’s a gentle line I have to walk with this, because if I’m bleeding internally they have to band me (they tie off the bleeding veins in my esophagus and let them die off) which is a painful experience in itself, let alone now that I’m hypersensitive, additionally if the bleeding is at a critical level (where I could die from the blood loss) pausing my treatment could be considered…and that isn’t going to happen.

I know what some of you are thinking, “Wait, but you could die from the blood loss.” But see… I’ve had so many cases of internal bleeding I can tell where and if it’s manageable or not. Luckily for me the bleeding has stopped, and I’ll just be light-headed for the next day or so.

In any case, sleep has been the biggest part of my entire weekend.

I also learned this weekend that if I don’t re-apply SPF45 every hour or so, I’m going to burn. If I’m out in the sun for longer than ten minutes I burn.

Also: Please sign the petition below, RX companies need to be reminded that profits aren’t all they’re after.

 http://www.hepmag.com/articles/HepC_Combination_Petition_2501_22661.shtml

Friday, July 20, 2012

Injection #2 now with video(not of injection)

So, this is my first video-cast, i'm not live yet! but soon i will be as soon as i figure out how best to link all this mumbo-jumbo.

Regardless, i hit a vein tonight, so gusher time, so i'm very tired.

The symptoms are getting more intense, i get massive aches and pains in my sides. it often feels lik a large man is grabbing my sides and violently shaking them.

These posts after injection are going to be less cohesive, deal with it.

Week one and done!

Thursday, July 19, 2012

Holy shits

Okay, the pain in and around my ass right now is ridiculous. It feels like i spent an hour sandpapering  my asshole and then i have a tiny fart based robot randomly applying lemon and jalapeno to remind me that the pain is still there if i forget. I have to take Metamucil now at 6am, and at 7pm on the dot, if i don't... well...Inside wants out. On a walk today i had forgotten to take my Metamucil and just took my pills, the sensations came to bubble. It was like that restless kid on a roller coaster that was at the end of the ride slowly approaching the station of my ass, rearing to leave the safety harness was barely proving itself under the circumstances and the heat, the heat were like the screams as he, trying to break free, explains his excitement for the next roller coaster, already on the horizon.

Except the train and child are a mass of hot magma, a fecal torrent of despair, and  the unholy remnants of the pills burning the walls as it travels. the safety harnesses are my soon weary muscles struggling against the odds to keep in, what so obviously wants out.

TLDR; i'm installing a seat belt on my toilet, because it's gonna be a bumpy ride.



I should learn how to make a mature filter on some of these posts.

Tuesday, July 17, 2012

Tuesday, it’s come and gone, sans coat.



This is Good Idea, Bad Idea. Little things I've learned so far about my treatment.

Good idea: Tylenol before injection.
Bad Idea: Aleve before injection.

Why? No clue. I’m no biochemist, but here’s the big difference I’ve noticed Tylenol not only packs a faster punch it also helps the quell the fever, while Aleve just makes you glad it’s processed in your spleen so there’s less pain in the liver.

Good Idea: Metamucil
Bad Idea: liquid Pep-to

The run down, pun intended: So Volcanic shits are these hot pyroclastic flows of fecal matter that erupt with only the warnings similar to a volcano…slight swelling and brief earthquakes. The liquid pepto, while calming the sick puffer-fish stomach, helps foster the rush. Much like a coal mine too close agitating the mountain.
Metamucil, twice a day, erryday. Give me all of your fiber. It makes the burning stop, and slows the flow, sometimes it’s solid!

Good Idea: Nuts and all the water
Bad Idea: not eating nuts

I’m not crazy, nuts are great. I’ve been snackin on Cashews, a decent about of fat, and other stuff. Whatever it stops the puffer-fish sometimes so that’s cool with me. Also water, I drink easily 200oz per day, I feel crappy if I don’t.

Good Idea: Thinking things through, and explaining your feelings when in rage mode
Bad Idea: What normally happens.

The emotional side effects can be devastating when not handled properly, typically RX occurs when a subject approaches depression. The first time i did this was hard, the mood swings were massive and no one i talked to could seem to understand what was happening, i fell into a depression. Instead of RXing it i slowly worked that shit out, and came to my current understanding. This helped dramatically when the second time came around i managed to avoid a lot of stupid shit that i would have done otherwise. Emotional side effects have just started to hit me in this go around (Wed 7/18/12) rage mode has no point, it starts from something, anything and becomes this monster that if it finds anyone latches onto them and directs the feeling at them. 

MORE TO COME!

Monday, July 16, 2012

A Case Of The Mondays


My first weekday on the treatment went smoother than I expected. I managed to wake up, take my medication, and get to work at a reasonable time. While I was slammed at work, I had come in expecting to be required to work overtime, thankfully that wasn't the case and I was able to leave at a normal time.

I had to watch my temper several times, as I noticed a new symptom; pointless rage. While the last two times I noticed a drop in testosterone, this time it feels like my testosterone levels have risen. The result: I have to watch my mouth, or I’m going to say some really stupid things.

I've also noticed a less interesting symptom, while before my stomach only hurt when nearing empty, instead it just hurt. The pain was akin to how I imagine having a freaked out puffer fish in my stomach would feel. My sides felt even more intense shots of pain throughout the day, and I could not stop farting.

Swear to God, I’ve never had so much gas in my life. I’ve decided to add eggs and cheese to my morning diet, so that I can stop eating this crap for my mandatory 20g of fat. The crap I’m referring to is crumb donuts, cinnamon rolls and PBnJs. Don’t get me wrong, I love a good PBnJ, but I’d like to enjoy them after treatment.

I powered through work and managed to get through my first work day on treatment.

I’m working on figuring out how I want to set up the vlog, but I’m hoping to stream it live for ya, Friday nights from 7-8, right after my injection. 

New Symptoms: rage, more gas, puffer fish stomach, achy-breaky sides, oh and a super cool random five minute headache that comes and goes each hour and feels like someone is stabbing a random part of my brain. 

Day 3


Saturday night, I decided I’d be bold, and head out. After a two hour nap and a shower I figured I’d be able to handle a little while downtown as the worst has yet to come. While driving wasn’t a challenge (but to my surprise) the hordes of people were an issue. My newfound hypersensitivity played a very unfortunate role as the passersby brought the smells of the comic-con hall out with them. I was hoping to meet up with friends but due to communication gaffes and my spiking a fever earlier than anticipated I was only able to meet up with one.

But all in all it was worth it. The night taught me there is no way I can go beyond a few miles from my home at night, and I most assuredly should not drive.

Sunday brought the return of my energy, a new metallic taste and volcanic diarrhea. I made the most of the burst of energy by attempting my normal workout routine, I cut my reps in half and toned down the weights but much to my surprise I managed an hour, guitar and videogames killed my mind for a few more hours while I debated what one thing I would do today. I knew I couldn’t risk over doing it again with my first day of work the next day so I hung out with a friend for a bit, Waggery (Waggery is a group of my best friends, we’ve known each other for a long time) invited me out to Islands, but the times didn’t work out as I’d already committed myself for the evenings events and also I hate Islands.

The most challenging thing so far is figuring out what I can and cannot do, because as inhibiting as the treatment is becoming, it still allows me to be able to have one choice per day. Trying too much could drain me, something I’m glad I realized early on.

Additionally I’m glad I was able to get in better physical shape before the treatment this time, it’s proven to be one of the best choices I’ve made in a while, and I’ve a good friend to thank for that. Her tenacity against the odds has been inspirational to me, and it’s brought me to a new goal.

Next May (2013) while I am still on treatment, I plan on participating in the American Liver Foundation's Liver Life Walk. It’s only a 5k, but while on treatment it may as well be a 25k. Also I want to do more than that; I want to raise ten thousand dollars. It sounds lofty, but given the amount of time I have, and how much I plan on hustling, I think I can do it.  I’m going to piece everything together and build the website for it come October.

Saturday, July 14, 2012

Day 1 and 2


Today is Friday the 13th and while most consider it to be an unlucky day, it’s the day I’ve chosen to start my treatment. I had originally intended on starting months ago, but issues with insurance companies delayed my start date until now.

Today is mostly prep, until a little before 1900, then I begin. The treatment consists of six pills in the morning and six in the evening, they must be taken 15-20min after eating around 20g of fat. Additionally there is a weekly injection, while most of the time the injection is easy, occasionally you get what my mom so lovingly calls a “gusher.” It’s when you miss the fat and hit a vein… needless to say it hurts, and usually bruises.

Having done the treatment before I know that to expect, to a certain degree. This treatment includes a whole new drug, and it’s one hell of a doozey. The drug is called incivek, and has some crazy side effects including myopathy and lots of rectal issues/anemia… it’s less than pleasant.

--this previous part was written before injection—

After the initial injection, it’s not terrible, it’s just like the last two times, I feel very tired and a little nauseous, memory has taught me to take a Tylenol PM prior to injection so it cushions the initial injection.

I had intended on posting this last night, but I fell asleep in delirious haze, as if I hadn’t slept for days.
This morning brought back memories, aches and pains all over my body, random burning and freezing sensations, hypersensitivity, nausea, I feel physically weak and a new symptom burning diarrhea. Pepto is not helping this cause much.

I’ll be setting up my camera for a vlog that I intend on doing post each injection, you may even be lucky enough to watch me inject! This treatment is not for the faint at heart, i dropped my fear of needles when I was a kid.

This weekend is also comic-con, and for the first time in 14 years, I’m not going.
So it’s a strange weekend…

A Reasonable reason



I guess it would help if I explain why I’m writing this, why I feel so strongly about it, and why I need your help to spread the word regarding the dangers of viral hepatitis, and to promote causes that can facilitate it's eradication.

My name doesn't really matter, so call me Bonhomme. I was born under relatively normal first born c-section circumstances, except for a microscopic difference. I am one of the few vertical transfers, which means my mother had Hepatitis C, and gave it to me once I was born. My brother and father do not have it, it’s not genetic, it’s not an STD, it’s a bloodborne pathogen which means it is transferred only through blood to blood contact.

It’s a strange virus and doesn’t affect everyone the same, it attacks the liver, causing hepatitis (hence it’s name.) Generally speaking the virus can cause: Jaundice (yellowing of the skin/eyes brown by the cuticles), fatigue, chirosis, fibrosis, liver cancer, abdominal pain, dark urine/stool, loss of apetite, nausea, vomiting. What does all of that mean? It means If you’ve got Hepatitis, you’re gonna have a bad time.

Due to the nature of a deteriorating liver, transplants are often necessary(it doesn’t cure the virus, just prolongs life) but even with transplant the life expectancy is decreased. For myself I was staring at timer that say death before fifty… now some of you medical professionals or Wikipedia experts are going to question that, because given what I’ve said it should be before sixty. The catch is that I have not only the hardest of the hardest to cure types… I also have developed esophageal varicies, due to my deteriorating liver.

I’m not the worst case of this…shituation, but I’m in that bracket. I’m also classified as a non-responder.
What’s a non-responder? In this case it’s someone who has not responded to treatment…. In my case it’s twice I’ve failed… so here we go third time’s the charm! Each treatment has been progressively stronger.
So here we go, here’s to forty eight weeks of feeling terrible, and to going from Hepatitis C to Hepatitis Free…