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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!

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)
http://www.cdc.gov/knowmorehepatitis/media/posters.htm
 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

Move.

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!


I TAKE TWO PILLS SO THEY CALL ME TWO PILLS.
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.