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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!

Wednesday, September 26, 2012

In case you were wondering, blood tastes like popcorn.

For your convenience a glossary of terms is located at the bottom of this blog
As the weekend came to a close, I kept noticing black stool[i] which was unnerving but only a major concern if I happens multiple times. This is the case for me, because I bleed often. As previously stated I was exhausted this weekend, and a lack of blood will do that do you. The stool and tiredness continued into Monday morning so I packed up an overnight bag and had my dad drive me to Urgent care. After explaining my situation they dropped by about an hour later to start hooking me up with IVs and a heart monitor.
My right arm was set up, and everyone was pretty calm about the whole thing… until I asked for a barf bag.

  Within a manner of moments the taste of popcorn filled my mouth as a fountain of blood spewed forth to the unprepared receptacle. It turns out, when you vomit blood, shit gets serious, fast. Within five minutes, I had an 16 gauge[ii] in my left arm, and more heart stickers for the next heart monitor. The paramedics were right and ready to go, they threw me on a yellow mat to make sure if I vomited again, I would make a mess of things. The most interesting part of all of this is that somehow…somewhere the idea that I have C.DIFF[iii] came into play.

Which required everyone to wear protective gowns and gloves, I just assumed it was because I was bleeding profusely and have Hep C. In either case, upon arriving at the ER I expelled the remaining contents of my stomach; there was…a lot…of blood. As I was wheeled over I was introduced to my ER nurses. Wait, I want to say something here… my ridiculously hot ER nurses. They began the transfusion and gave me some things for the pain. At this point it gets really hazy; they transferred me to the ICU, and as the number of drugs in my system increased, they performed the upper endoscopy[iv]. During the endoscopy they found six bleeders, which resulted in six bands[v]. Every time I swallow I feel the tension against the bands. I was lucky enough to have another excellent nurse in the ICU, and in all my time at hospitals she was by far the best.

Recovery the next day was a blur of sleep and pain medication, my concept of time here is completely garbled. The next nurse on my final morning was unfortunate, besides being late, mixing up my drugs, leaving the door open and locking the bed so I was stuck in the upright position, I think the only part I liked about dealing with her was leaving.

I’m glad to be home now, it was a hell of an ordeal, and I get to go back in two weeks and have another upper endo, hopefully, without the blood loss this time. J

[i] Black stool is poop that contains a large amount of blood, typically denoting bleeding from the GI tract.
[ii] The gauge denotes the thickness of the needle, the higher the number; the smaller the needle, 16 is typical for transfusion.
[iii] C Diff is this nasty bacteria that resides in your colon and messes with your colon and stomach if you don’t naturally have it.
[iv] Upper endoscopy is when they fill the stomach with “air” use a camera and tool to cruise down the esophagus and correct any bleeders.
[v] Bands are tiny little elastic bands that deteriorate over time, and are attached to bleeding varacies, they basically tie them off causing them to fall and regrow properly.

Sunday, September 23, 2012

Free Fallin

So my last two injections went fine when I broke flesh, but post injection seems to be another story.

Last week’s injection bruised within a day, and has only recently stopped expanding. Since that injection, the ribovirin cough has returned with a vengeance. Fueled by the unusual weather my nose has started over producing mucus.

After this last injection however my mucus is mostly filled with blood, my eyes have become bloodshot and the headaches are getting worse. The injection this last Friday was the worst I’ve had, as I went through and through a larger capillary.  The bruising started almost instantly and will rival its partner on my opposite leg. 

My energy levels have dropped dramatically, and I spent six more hours sleeping this Saturday than I did the last. I have no physical rashes, and yet it feels like I’m itching underneath my skin. The typical liver pain has been enhanced further and seemingly every muscle in my body is lobbying for president of annoying the shit out of me right now. As everything I do hurts, any amount of prolonged pressure inflicts a dull ambient pain around that area. This causes me to shift my position constantly, rivaling perhaps a small child with ADHD.

I made the mistake of easing up on my physical routine because I was too tired, I’m going to pick it back up again and hope it addresses some of the issues. I can’t sit here and do nothing. I’m tired of waiting and having no control over the outcome, I will seize this. I will take what I’ve worked and endured for, and I will not back down. Tom Petty knows what I’m talkin’ bout.

Only two weeks left of the Incivek, so thankfully in a month or so many of my symptoms should disappear.  I’ve still got 31 weeks left over all…. I’ve done 11 Injections this round. I’ve almost through one of hard  parts,  the second hill comes after 30 weeks because of the damage dealt to the injection sites. 

Wednesday, September 19, 2012


I haven’t posted in a while, as I was waiting for some news.

So now, I present…. Three odd statements that are joined by the conclusion! Enjoy.

Knowing the difference between less than and negative. 

I didn’t understand how someone could confuse to two terms, because <43 is not -43. While technically -43 <43… that’s not really what we’re talking about here… The symbol for subtraction – is also referred to as less than, if you think back to when you’re a kid and you were in lower grades K through 4th, the sentence would read: “Four less than Six is Two.” Which would of course be 6-4=2  Hence a confusion between the terminology of less than and negative…

The other night I was having a conversation with a friend, explaining that I’d been showing great results with this treatment, he joked that I would probably go negative at the rate I was going…

Today I received a phone call from by nurse… I was expecting a call from my doctor, which meant that this wouldn’t be stellar news if it were coming from an intermediary. She called to tell me the results I’ve been waiting nearly two weeks for. She explained that the results showed progress, but the virus is not undetectable. She then told me my viral load…. Negative 43. I asked her what that meant… her response was “-43 is not undetectable, you have -43.” To which I rephrased myself “What does the negative forty three mean, is it better than zeroing out?”  She again explained “-43 is not undetectable, you have -43.” Realizing this was going nowhere I headed back to work.

Trying to make sense of it I talked with my mom, as she’d gone through this before. As she went through her paperwork I recalled a Less Than 43 Viral load that mom had maintained for six months before eventually being expelled from the treatment as it wasn’t working. The idea behind less than 43 is the number is so low it’s practically undetectable, but it’s still detectable. I put two and two together and realized that is what my nurse meant… less than 43.

This means I have one more blood test to take which shows that I’ve zeroed out, or I’m off the treatment. While it’s great news that I’m so close, I know what my mom went through. She could have ended the failed treatment six months prior but continued on in hopes that the less than 43 would transform into a zero.
Thankfully, my nurse said I’m moving to monthly blood tests which I can extrapolate to mean I have two more chances instead of one to zero out…

Overall I’m not sure what all of this means, but it doesn’t give me the warm-fuzzies by any stretch of the imagination. What I do know is I’ve got a hell of a fight ahead, and it’s the only fight I care to win right now.

Friday, September 7, 2012

There was Nutella everywhere...

I’m going to start up with the videos again next week; I’ve taken a bit of a hiatus from them due to a Nutella accident. I accidently smeared Nutella on the camera lens, and then forgot about it for a week. Future me can deal with cleaning that.

This Thursday I had my blood draw which will determine if I hit that magic zero. Luckily the math is on my side, nine million in four weeks… I should be able to knock out those last two hundred and twenty. Needless to say I’m looking forward to the results on Tuesday. Although… I suspect that the phlebotomist who drew my blood this week not only gave me that lovely rips-your-skin-off medical tape instead of CoBand, but didn’t draw for my viral load. Thankfully I only do these every other week now as the hypersensitivity makes blood draws a pain for three or four days following.

A wild symptom appeared! This one is just plain wonky, I was told gum sensitivity will become an issue, but on some teeth my gums have recessed one to two millimeters… With my hair continuing to thin, if my teeth fall out to boot, I’m going to buy an old pick up, a coon dog, and start quoting Larry the cable guy.

On the up side I’ve had a lot more energy! I’ve been able to do two to three things during the week in addition to work. I’m hoping the trend continues, although how Interferon will hit me each week is hard to predict. On a similar note, this treatment causes muscle wasting and because I eat so much more fat now, puts me at a disadvantage in terms of staying fit. But much to my delight, because of my exercise routine, and my diet I’ve been able to lose about twenty five pounds (mostly fat) in the last three months. I’ve also put on some more muscle weight thanks to replacing the donuts and cookies with cashews, eggs, peanuts and milk.

With my ninth injection over tonight, I have thirty nine weeks remaining. I’m about nineteen percent of the way there. 

Monday, September 3, 2012


This weekend brought a little more adventure than I was prepared for. In terms of my treatment I learned a few key points.
-take the correct amount of pills, 20 minutes after 20g of fat, otherwise… you’re gonna have a bad time.

This brings me to the key mistakes I made this weekend that brought a little more adventure than I’d have preferred. On Friday night I accidently look an additional Incivek, which is the ‘irritates the hell out of your colon’ pill, this made the next about twenty hours a balancing act. And by balancing I mean taking lots of Metamucil and drinking more water than normal to minimize the pain. You’d think that the next morning when I took one less, that it would figure itself out… Nope. Not these pills, these ones are jerks.

Another key element to the pills is the 20g of fat, and waiting 20 min. This Monday morning I apparently decided that waiting is for suckas. A manner of minute or so after eating some of my fat requirement, I took my pills with milk.

(The neat thing about taking Propanalol with milk is that it dissolves faster than it does when taking it with water. It tastes like slapping your tongue with a freshly caught albacore. My face quickly explained the terrible mistake I’d made to any nearby.)

Within about five minutes after taking my meds I had flashbacks to when I first started this treatment. And now everything tastes like its coated in a metallic milk… This treatment is so weird.

The treatment also has deeper psychological ramifications. The challenge of the treatment is election, because I have to look at my pills, and syringe, and know that what I’m about to do is hurt myself. Yes, in the long run it’s worth it. But right now, the very idea that each time I prick myself with a needle, it’s going to feel like I punched myself in the leg for a few weeks, and each week stack the bruises. On top every other symptom. The reality that I elect to cause this pain drives strange emotions which are in turn amplified by the treatment itself.

In the long run, it’ll be worth it. J But for now it’s about struggling through it.


i'd like to say thank you to those who joined in and took a shot with me on the 31st! I have a good mess of pictures and video. :) Thank you all for your ever growing love and support!