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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)
 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.