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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, October 10, 2016


Damnit, who turned the electrolytes off?

The last week of September always seems to be a rough time in my life. Whether it's the end of a serious relationship, the catastrophic failing of treatment or simply my consistent return to a decompensated state, the time never seems to be so grand.

It's become such a theme in my life that I can't seem to kick the Green Day song until it feels like October again.

As a cirrhotic liver patient, a low sodium diet is routine and a relatively high protein diet helps me rebuild the muscle loss due to my decompensated state.

When the liver gets to a certain point, it stops giving a shit about this and demands more sodium. I started to notice a desire for salty foods unlike ever before but I really thought little of it. My body even began rejecting higher levels of protein, either by making it feel unappealing or forcing me to eject it from my system.

With all the other changes going on at the time it was hard to dissociate it with some kind of change in my system. As I had been moving living situations, my body began to get more and more tired. Eventually after a week of moving boxes and unboxing things it became crunch time in retrieving and wrapping up the old apartment. Unfortunately three days before we were supposed to vacate I had spent more time being exhausted than being of much use. Wednesday 9/28 was the last straw, halfway through the day I was brought over to my parent's house as I could hardly stand. There I was watched carefully as I began to grow more and more tired still. On Thursday morning I briefly felt better but as the day would go I began to get lethargic and my ability to stand was compromised due to balance issues. I went to urgent care as I had a terrible experience with the ER a month ago. After waiting for near an hour for some kind of answer from the attending physician my father and I left for the ER as they alone could quickly handle the situation. Traffic that night caused us to wait further but thankfully during our waiting my GI called me and she helped prep the ER for my arrival.

The pain became excruciating, I was in tears. My mother, who worked nearby, was able to help walk me through the check in process. With my doctor having prepped my entry and my visibly decaying jaundice, the pain alongside made the proceeding moments hazy to recall. As they began to gather the necessary information as to what was happening with me they began my IV. An intern introducing herself as such asked if I would be okay with her attempt at the IV. As my veins are like highways it's hard to miss, but it does happen. As it would this time, the second spot they chose was less desirable and the needle stick was also painful. The pain medication would ease this issue over the course of the next few days.

As they moved me to my room they tested the blood they'd drawn to get a better picture as to what was going on. As the night would go, the pain would come and go but my tiredness remained. My mother stayed with me the first night to assist with minor things as nurses and their aides were slow to respond during the evenings. The second night my friend stayed with me, it was unexpected, and he was extremely helpful and helped make my stay easier. By that Saturday we had come to find the culprits of My extreme exhaustion and pain. My sodium was dangerously low, my calcium was as well, and my ammonia was very high.

When sodium gets too low it can cause seizures and exhaustion, if it gets too low it could kill me.

My calcium being low only added to those elements, and ammonia being so high puts me at risk for serious brain damage and a potential coma.

The interesting phenomenon is that I do not seem to display the typical flapping that occurs with the hands of patients with Hepatic Encephalopathy.

They continued my liquid restriction(1200mls) to help prevent me from losing more salt. It was arguably one of the harder things to deal with as everything made me thirsty.

On Sunday night I had delayed my pain meds to return a phone call.

The result of the call and reaction left me stressed out and upset, the next day I was taken more seriously and the nurses and aides almost began to know me as I'd been there so long.

I am on the liver transplant list, and due to my presently high bilirubin my MELD score puts me near the top. Often I am second or third in line and as an alternative I am contacted for the potential transplant.

I got a call at 10:49pm from transplant

I explained to transplant that I was presently in the hospital, they said they'd need to speak with a nurse

and hear my charts over the phone or faxed, so I asked my nurse "to come here now to assist transplant for me so that they can determine if I'm in the condition to transfer over."

and explained that I need her now. 'immediately as this is a time sensitive matter'
(Normally a nurse leaves a direct line for me to contact them, she however did not feel the need to do so. Telling me she didn't have a phone.)

In the mean time I was talking with transplant about my options and when speaking with them I told them how slow the nurses/CNAs had been the last few times I've asked for anything they said to have me call them back when my nurse arrives.

At 10:51pm I had asked for any available nurse.

At 11:10pm I again explained the urgency of the situation and explained it once more

At 11:15pm a CNA came in and I explained the situation AGAIN, and said get me my nurse now.

At 11:19pm she moseys in.

I explain the situation to her, her response first was that of disbelief "transplant is calling so late at night?"

So I told her: yes, that is correct, called them back and handed her the phone

She read off the numbers to them and then passed me back over

And they explained that they'd need to transfer me hospitals now.

*Meanwhile my nurse wanders out*

Engrossed in the conversation I explained that they should begin the transplant procedures and I would contact my parents to make the decision.

As I am not in the emotional or psychological state to make this choice.

As I notice my nurse's absence, I message over that I need my nurse to begin transfer procedures

And the lady on the end of the call button messages me, "okay why don't you wait to tell her yourself"


The Nurse or CNA on the call button begrudgingly wrote the number down.

I contacted my parents, and after about 15 min of deliberation both say no.

So I call transplant and cancel the request then call my nurse over the button

And explain we no longer need to go through with it. As it turns out this was unnecessary as She hadn't even started faxing over the paperwork. And then, and I asked for ice, explaining my last pink cup (500mls) she instead decided that I only have 300 mls left for the day instead of 500, refusing to get my last cup and reducing it based on her whimsy. I asked for my pain medication, and just cried from the entire experience. It's a tough call to take, and a horrid realization that as a transplant patient not only does someone need to die for me to have one, another person could die as a result of my taking that liver over them. It's something that goes through my head every time I get this call.
I took down notes using my call log as a time log to note who I talked to/when.

When I explained the situation to the nurses the next day, they took me seriously as I thumbed through the notes I'd taken that night. My nurses indicated to me that my nurse from the previous night did in fact have a direct line.

These facts made me feel like my nurse from the previous night didn't trust me and didn't take me seriously. So when every nurse I spoke with afterward showed a modicum of respect I was extremely thankful. Several nurses and doctors came in to help build a better system for dealing with transplant patients and took my criticisms to heart, from those conversations on I got along very well with most my nurses, as I normally do.

I was switched over to a normal diet with less protein. So my diet went from 1000mgs salt with 100g protein to 2000mgs salt with 60gs protein, in a 3,500 calorie diet.

Too much protein builds up ammonia, which causes hepatic encephalopathy in those with decompensated livers.

The sensitivity and pain remained, and as magnesium was fed into my IV, it burned so much that I required pain meds before and after it. My body's electrolytes were being forcibly rebalanced, and overall I had begun to feel better.

I could walk around and I began with small walks on my own around my room, eventually expanding my walking across the floor, to laps around the floor itself. Picking up saltines along the way. My docs worked with me to assesses how to manage the pain when I left the hospital and he suggested Tramadol.

Reluctantly I began taking this new pain med.

It took a few hours to release me from the hospital, but in that time I put in an order for delicious ramen soup from a local ramen house, as I needed to maintain my new sodium levels.

I drew a happy Halloween Nightmare Before Christmas message on my board as I left. With the IV out of my arm, I could see the full extent of the hematoma.

During all of this; my friends stepped up and took care of every last bit of the move. They made time in their busy schedules to stop by and stay with me for good lengths of time, all the while helping me when I was unable. To say that I am grateful for them is hardly enough, this experience has made me appreciate them that much more.

I'd noticed many friends reach out to me via social media, even the date that I had to reschedule checked up on me. Although this was not my first rodeo, I've never felt so failed by my own body, and by my nurses. I've learned a lot of depressing things at each hospital visit I've had but this one was by far the most stressful and emotionally challenging.

Life is not easy, but in moments of need, those who are close to you, can make you feel more humble and grateful than you'd ever thought possible.

Tuesday, August 30, 2016

Deviated September

Yesterday was my fourth blood test, in the last month. My bilirubin and INR have been at a levels worry some enough to postpone treatment.
(The cost of a treatment is more than the meds alone, this month I spent over $350 out-of-pocket costs and that's with insurance!)

With the help of my family and advocates I was able to negotiate better terms on the price I can bear. But all of this is contingent on my having my present insurance and that I'd ordered and received it before I switch insurance September first.

In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice.
This is my third Gilead treatment, so it's hard trying to lobby for support.

While I'm pushing to get the hold/stop order from my doc removed, I'm also moving. (Which when you have health concerns requires certain things.)

If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment.

It's about time.

That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off.
The weeks I lose waiting for treatment aren't just the time now, it's less time later.

To savor every day that I have, that is all i can do.

Tuesday, August 9, 2016

Wait and C again

I've spent more time in my life, waiting and seeing, than much else. Over the years since I was eighteen, I've spent a little less than two years of my life on a treatment for Hep C.

I had been looking at Zepatier as a potential treatment, and had devised a method by which I would be able to take it. However Epclusa was approved by the FDA days afterward, so we moved forward with that.
I am presently awaiting the Epclusa Treatment. While I've managed to get it approved I happened upon yet another snag.

My liver blood panels weren't looking too good. My bilirubin had shot up to nine, and now rests around six while my INR has gone down to 1.9 (for reference, and INR of: .9-1.2 is average, while a bilirubin level of .3-1.9 is average.)

Until my liver function starts to improve, I am again waiting. In the mean time an MRI and another blood test hopefully will show progress enough to begin treatment.

Overall the treatments have taught me the power of resilience, humility, and patience.

As I see it, I've waited my memorable life for a cure, what's a few more weeks?

To those awaiting treatment, sometimes all your efforts may seem in vain.
Dig deep, just a speck of hope, let it grow by holding the hands that help you.
Know that you are not alone, that others can be your champion when you lack the strength.
We may at times come across a canyon too great, but together we can build a bridge.

Fun fact: Naomi Judd is a spokesperson for the American Liver Foundation

Also super stoked that the NoHep website launched and the movement is happening: Elimination of Viral Hepatitis by 2030, NoHep

Tuesday, June 7, 2016

Berning Up

Bernie Sanders is an amazing candidate trying to uphold his ideals against the establishment. He doesn't play political games and he talks only about the issues.

Wait, sorry I messed that up.

Oh wait,
no I didn't, he messed that up.

This is why I found him appealing as a candidate. That his idealistic solutions had tangible form which will usher in an era of liberalism within government.
This is what I felt walking away from rallies.

But more recently, Bernie released details of his healthcare plan. Which sounds like a wonderful plan.

But let's really start to give a shit for a second and think about how actually impossible everything he wants to do is.

Of all the candidates Bernie will face the most opposition. Why? Because without the Millennial vote in tow his political power is moot.

"That's not true! Older people vote for Bernie!"
Sure, but by worse margins than the numbers of millennials who support Clinton.

Democrats: 77%-12% Bernie doesn't exactly hold the torch of millennial voting. As for Clinton among Democrats: 65%-30% isn't that far away.

While Independents and unaffiliated can vote in the Democratic primary, the purpose of super-delegates serves as a political counterweight to those votes. Which basically affords us a lovely moral for the whole family: Rigging a political game is only "cheating" when you're not winning.

If the political opposition is so terrible to work with that their own speaker resigns, Sanders will be handcuffed politically. But I haven't said anything we all already didn't know.

Before I flew up to Sacramento, to speak in favor of an item on the budget proposal allocating funding for HCV testing statewide, I read something i couldn't believe. 

In talking with other advocates for HIV/AIDs and Viral Hepatitis, I was disappointed to find not a Bernie supporter among them.
When I returned home I took a closer look at his healthcare plan. And I realized why. Bernie Sanders is ever the idealist, and as such he doesn't consider the communities affected by his decisions. His plan requires multiple radical changes that if done would result in years of healthcare chaos, and if no one de-funds it, it still will be incredibly inflexible and result in patients dying waiting for treatment.

Sanders espouses Medicare for all, a single payer plan.
The type of plan that Sanders would likely install would be reminiscent of Canada.

His plan calls for a replacement of our existing insurance system to a single payer government insurance. But...Insurance companies no longer resemble the behemoths they did before the Affordable Care Act (ACA). Because of the ACA, many new insurers have grown out of medical groups and Managed Care Organizations (MCOs). Local medical groups can offer better rates with a better focus on care and since the insurance companies are built into the hospital the overhead feeds the hospital as well. It's not ideal, but it's more responsive, compassionate an patient centered than ANY insurance system we have ever had public access to. It is an adaptation of Kaiser's model, and it works (better than it did previously).

Not understanding the transitional needs of patients between insurance agencies means sidelining prescription drugs, and medical appointments. Making for additional hurdles to the often kafka-esque nightmare that is transitioning between MediCal/Medicaid and any other insurance.

The politicking insanity of Sanders after Clinton's Nancy Reagan comment:

Keep in mind that Sanders' position on HIV/AIDS was not revealed until that gaffe, and it was done so intentionally alongside his own personal comments against Clinton. As previously mentioned, his/his staff's disrespect towards the HIV/AIDS coalition orgs shows his true colors, but regardless I held my breath waiting for May 25th to see what he would do.

The plan he presented in March (in conjunction with politically attacking Clinton after she tried to play to legitimizing her political experience as a FLOTUS by making some very embellished statements regarding Nancy Reagan's role in HIV/AIDS History ) remained the same after Sanders rescheduled meeting on the 25th.

And then he decided to re-package it...

He presents the same stances over and over again, and has demonstrated a general disrespect for the HIV/AIDS community.

Having Hepatitis C, with the liver damage I do...if I have one day without my prescription medications there is a high likelihood I will end up in a hospital. I know of many others with Hep C who are stuck waiting to get sick enough for treatment who would find themselves in even worse situations due to paperwork backlogs.

Millions of Americans have Viral Hepatitis, and thousands of them will die every year regardless of race, creed, political affiliation or income.


It's absurd how much it resembles a microcosm of the systemic problems within each community it affects.
Which is why it's so important to understand every perspective on these matters. The solutions in San Diego, or Compton, or Los Gatos will all be different.
Because fighting these diseases needs social and emotional support tools as much as it does medical, insurance and pharma reform.

The bottom-line is that saying he stands for people with Hepatitis and HIV/AIDs when he ignores our needs and listens to what he wants to hear is disrespectful, and to do so with such a nonchalant attitude... he doesn't stand for me and he doesn't understand that.

In a millennial homage to a questionable DNC nominee:

Outta matches, maybe I'd be better of with a tinder date
heart dropped, shame no profile for this candidate.
Are all he has group photos? It's so hard to pick him out.
He'd appeal to our grizzly population posing with a trout.
What is this insane lack of respect?
I'm off balance, out of checks.
Am i missing something, out of conned text.
No. Just really about the gender, the sex.
I thought he was supposed to be the last of the Silent Generation.
And there's hard turns up ahead but less for the white Caucasian.
I had the privilege of privilege but it is one voice within a crowd.
and we all deserve equal time on the mic, so quiet down.
not to be silent but to listen to others,
because that's what sets us apart, besides our mothers.
When it comes up not down to these perspectives
He should understand the model: Respect, Give.

I can no longer endorse Bernie Sanders.


You can follow some of the more absurd web antics of the clash between Bernie's newest conspiracy theories and HIV/AIDs activist Peter Staley 

Sanders is a weak idealistic candidate who has little consideration for the communities he represents.

His narrative is the big picture: (Democratic socialist) Idealistic structures that he has mentally concocted over his decades in government can be applied to fix real world issues.

He presents his narrative to communities he meets with and then tells them how it applies to them. He does not consider the perspectives of the communities he is engaging.

That's why I'm not voting for Ron Pau...I mean Bernie Sanders.

Monday, May 9, 2016


In celebration and recognition of Hepatitis awareness month, I made an Art.

One of the most difficult parts of dealing with the daily challenges of hepatitis is the stigma. It is empathy which lends us better perspective, so I chose to celebrate the phrase "Walking a mile in someone else's shoes."

The shoes are worn and weathered by all who've dawned them.
The finish highlights the brittle weaknesses of the shoes, feeding the imagery of the near broken appearance. But thanks to its new exterior, the shoes are water tight and stable once more.
Reminding me that perspective is just as powerful a force for the one sharing their shoes as it is for the one receiving.

San Diego Liver Life Walk is May 11 Join us !

Hepatitis Awareness Month

Wednesday, April 20, 2016

Is the Titanic technically an icebreaker?

Before online dating, ice breakers were relatively impersonal. Online dating has given us the benefit of the profile. The idea that we know a little bit about the person before actually engaging conversation.

In late February I decided to openly display my HCV status on my dating profile.

Before doing so I took to Reddit for some critiques. Unsurprisingly the voices of strangers echoed the voices of my friends in the leeriness of posting that I have Hep C.

I am still petrified that they might be right.

At first I was surprised to see my interactions double, likes increased. I assumed it was in response to my honesty about my status.

In the messages or in conversation, it was easy to see when they read/understood that I have HCV. The tone changed, questions changed, and I became more of a curio than a person.

This doesn't always happen, but when it does it's nauseating. HCV listing did not affect my ability to get new numbers. It did lead to longer interactions and more time before the initial first date though. My profile will only be up for a few more months as the dating process is (emotionally at the least) exhausting. Listing my status means I tell every person I date regardless of how far it goes, and that's a lot of elevator speeches about HCV.

To those of you without HCV or similar Invisible Disability (ID) stigma, it is rare to see the reaction like this. To wear ID stigma so openly when you don't need to... doesn't  generally happen.

I came across critics who's response to my posting of my HCV status, was "duh, What did you expect?" Or advising against listing it as a whole.

HCV is kinda odd in this experience. In many ways it shares the same intimacy fears that HIV can have. But HCV's side effects don't really kick into gear until sometimes decades after infection.

One of the reasons I'm doing this is because I want my generation to know how prevalent this disease is.

I want people with Hep C to know they're not alone.

I want it to be uncomfortable, that's how we change and grow.
And to know that after two months of listing my status, my response rates haven't changed... makes me smile a lil bit.

Numbers and Birds for scale:
To give you a better picture of just how frequently I mean, in a collective 4 years (in between relationships from 22-30) I've gone on around 200 first dates, and around 40 second-fifth dates.
Normally within a month period (between all apps) 4-5 new numbers.

The thing is, I use the app differently because I'm not looking for NSA or casual sex and I'm not looking to settle down. I'm looking to meet new people, if we click like we should then that typically translates to friendship. Every so often there's some passionate romantic blur, and something bigger.

There is something beautiful in finite experiences.

Breaking the ice with HCV isn't all that advisable unless you're very comfortable with yourself and your knowledge of it. Icebergs can still sink a ship.

Monday, March 14, 2016

Provocative Statements

Pamela Anderson and Kim Kardashian.


It doesn't matter what good they may do, their most provocative activism comes via their own power as sex symbols. The reason for this is that their names are so associated with sex that it's impossible to claim that it isn't a factor in how they promote a product, service, make a political or artistic statement.

Both Pam and Kim recently revealed nude photos in solidarity with the community they represent.
Kim chose International Women's Day, while Pam chose Hepatitis C.
(selfies and Kim Kardashian's essay located at end)

Kim Kardashian has the ability to hit on a public nerve in a very real way, she must be provocative for her brand to keep growing.

I do not make the assumption that the person she presents is the person that she is.
It's a work face, it's just that her product/brand is Kim Kardashian.

Kim knew that posting the picture would create a public conversation, she was fully willing to step forward by doing the same thing so many other people do with a selfie.

She released an essay to elaborate further along with more photos. The essay's irony in the first  paragraphs doesn't frame the articulated argument she was intending. She fails to see that our assumed prejudices pervert our beliefs until we shift our perspective. 

The depth and measure of art is not in its existence, but in the response to its existence.
And the selfie is so art right now.

Thankfully, the gasps from of those with higher moral fiber were met with the clash of the stances within feminism. Giving more exposure on all sides...All the while still promoting Kim Kardashian.

(Seeing all the reactions to Kim Kardashian's tweet, got me curious about the psychology behind it, and unfortunately there are presently only two studies, one American (men only) and another Polish(all adults) on the selfie, and they focus on subject rather than the audience reception.)

Compare the response to another sex symbol who released a nude on Instagram(IG) in November.

Pam Anderson released the nude on IG in November  to predominately positive responses.
Both women captioned their respective photos, and every aspect of the art in the photo is undoubtedly their signature style.

Wait...a second....IG doesn't allow nudes.  

Pam used it as an opportunity to remark about  how unaffordable the treatment is for the majority of those affected by Hep C.

Pam immediately set the tone of her message and her announcement took fresh advantage from the fall's political rally against pharmaceutical price gouging.

Both used their artistic license to carve a talking point on a diverse problem allowing more mainstream exposure.

Advocates and activists used the exposure to highlight key arguments within their respective communities.

Fantastic commentaries ,
Critical receptions,
Mainstream exposure,
and advocacy 

Since this is art, measuring the reaction within the community is the measure of the art's success.
The difference in reaction is telling. Both communities have had major escalating upsets and changes in the last few years on a global scale, and both suffer from a lack of unification. Both are also shaped by their diverse composition and intersectionality.

The critiques and responses above exemplify how willing we are to accept nudity as an artistic statement. Not only in their points but in one distinct choice. Whether or not to re-share the image.

For all groups the rationale to use/not use the image is based on readership reception.

After all.... why am I not showcasing both images right now? Because it's unprofessional.

Scroll down, I put them at the bottom so you can still browse this shit at work.

What this reception shows is that sexualized marketing is acceptable when the subject isn't the artist.
The artist chose a provocative photo to declare a statement, and to remove that provocative photo from the statement and use another photo is sexual objectification. Because at that point the statement she made is devalued by filtering it but still profiting from it.... Nah, I'm sure it's just professionalism.
make a wish
send this to 10 people in 10 seconds or your wish will never come true
Forgive my unprofessionalism 
Pam Anderson


Kim Kardashian

Kim Kardashian's Essay

Hey, guys. I wanted to write a post elaborating on my tweets last night. In all seriousness, I never understand why people get so bothered by what other people choose to do with their lives.

I don’t do drugs, I hardly drink, I’ve never committed a crime — and yet I’m a bad role model for being proud of my body?

It always seems to come back around to my sex tape. Yes, a sex tape that was made 13 years ago. 13 YEARS AGO. Literally that lonnng ago. And people still want to talk about it?!?!

I lived through the embarrassment and fear, and decided to say who cares, do better, move on. I shouldn’t have to constantly be on the defense, listing off my accomplishments just to prove that I am more than something that happened 13 years ago.

Let’s move on, already. I have.

I am empowered by my body. I am empowered by my sexuality. I am empowered by feeling comfortable in my skin. I am empowered by showing the world my flaws and not being afraid of what anyone is going to say about me. And I hope that through this platform I have been given, I can encourage the same empowerment for girls and women all over the world.

I am empowered by my husband, who is so accepting and supportive and who has given me a newfound confidence in myself. He allows me to be me and loves me unconditionally.

I feel so lucky to have grown up surrounded by strong, driven, independent women. The life lessons I’ve learned from my sisters, my mother and my grandmother, I will pass along to my daughter. I want her to be proud of who she is. I want her to be comfortable in her body. I don’t want her to grow up in a world where she is made to feel less-than for embracing everything it means to be a woman.

It’s 2016. The body-shaming and slut-shaming — it’s like, enough is enough. I will not live my life dictated by the issues you have with my sexuality. You be you and let me be me.

I am a mother. I am a wife, a sister, a daughter, an entrepreneur and I am allowed to be sexy.


Friday, March 11, 2016

Some Things Considered

I am an outlier,

But I am happy.

Treatment to cure is every person with Hep C's goal. When things get closer to the end it can consume us to find the keys to the locked exit doors. Even in my early 20s I gave up hope when Int/Riba failed, I grasped at straws and took the treatment again with a higher dosage.

That grasping, failing, created my first RAV, I had a q80k polymorphism. Failing a treatment is not simply continuing to have HCV but it also bears the risk of creating mutations, RAVs. 
So after failing Int/Rib/Incivek, Sovaldi/Olysio, Harvoni... I now have three mutations, RAVs.

I am an outlier, but one or two RAVs is common among experienced patients.

Zepatier, the drug i've been waiting for had a contradiction I was worried about. While previously I was unsure my Child-Pugh score; I confirmed that it is only A. Which means it shouldn't be as hard to get access to the meds.
Daklinza/Sovaldi/Olysio/Riba is another contender.

(to make things even more complicated, the existence of RAVs from a previous treatment does not indicate that the treatment will or will not necessarily fail)

Well....fuck.  There isn't enough longitudinal data for my situation on these meds to make the best decision. Why? Because breakthrough medications often lack the studies their non-breakthrough partners have at date of FDA approval.  Breakthrough therapies are not about the results, they're about maximizing the amount of time the patent is most profitable.

Zepatier will undoubtedly change the conversation about Hep C meds due to its lower price point and high efficacy in smaller groups as well as across Genotype 1 and 4.  I fear that this low price point will drive a "consumer's" choice in treatment. 

(Insurance agencies, Healthcare groups and Pharma companies make the real choice between medications before you even see em... which means 1/3 of the people deciding  give a shit about the patient. Fucking Trident has more support from leading dentists.) 

There are many combinations of Hep C meds for many different cases, each one with different efficacies. (Sovaldi ranges from 84-96% depending on subtype.)

The best drug/therapy to treat should be set by relative efficacy, not by price.
That being said, my condition is stable, I don't seem to be getting worse, nor am I getting better. If I keep up the healthy changes I've been making I may be able to stay where I am for a few years yet.

The key now is choosing the best treatment, which means waiting for more data. Thankfully the EASL (aka the International Liver Conference) is coming up next month, so we should have more information in the coming months.

In the meantime later this month I'll be making a trip to Portland and Seattle. Making stops in San Francisco, and Sacramento.
If you're along the route, ping me! 

Wednesday, February 24, 2016

I Heart DP

Oh shit, look that's me in there.

There may be spoilers. Head's up.

JK there are totally spoilers. Deadpool Deadpool Deadpool!

Is he here? Wait sorry, wrong fictional, fourth wall breaking character.

I wouldn't normally talk about a movie, but this super...hero(?) is important.

His name is Wade Wilson Aka Deadpool. For those of you not familiar with the story, he's a dirty mercenary with a heart of silver or a metal similar to gold. He's an antihero.

He is known for narrating his own story and breaking the fourth wall. And his superpower of regeneration is from a treatment to cure his cancer. 

With his voice guiding an audience its easy for them to understand this harsh and brutal universe, but the characters within see him interacting with the audience and believe him to be insane. This detachment from his own universe, is a core component of the insanity brought on by his origin story.

If we were without the narration, we would see the world as he does and the movie is jarring, confusing and violent.

Deadpool is a super "hero" for those of us with Chronic Pain, Mental illness, and Cancer.

Deadpool must endure constant chronic pain, due to his ability constantly fighting his cancer. His weapon x treatment also made him a touch psychotic.

As a person with a terminal illness and chronic pain, I loved being able to relate the tragic experience of diagnosis, the health care challenges, and his humor in the hospital.

From reaction to diagnosis to when Wade argues with Vanessa about priorities and the next step. While she went trough every avenue at her disposal to grasp for straws. His idea of not wanting to bring someone into the "shitshow" hit home in a very real way. The movie helped me see how ridiculous an idea this is, because we all have shit in our lives, we all have hardship at unknown times. We have to regard it as an aspect of our lives rather than as defining our character. Because it's how we react that determines character.  

His sense of humor feels comforting to me because I know that humor. It's a weird self deprecating brink of madness that finds itself in those resilient enough. In a sense it's being jaded by living.

Now on an even more personal level...

The dead pool being a board where members bet against each other to die. The dead pool is a game to deal with the reality of the trauma of life so close to death...

Between a few friends, we call ourselves lifers. We each have diseases that can cause us to die early on, so naturally we're in a life race to see who can die the fastest. There's no betting though. Oh, and no cheating (unless it adds time to the clock). So, When they explained the dead pool, I peed a little in excitement.

The weapon x treatment that Wade went through to become Deadpool felt familiar. Not that level of pain or superpowers, but rather the drugs themselves. The weapon x serum was derived from Wolverine's healing factor and applied to Wade to alter his DNA to combat the cancer.

This is similar to modern DAAs, Genomics is the basis for Sovaldi, Harvoni, Vikera Pak, etc. However, unlike the Weapon X program, the treatment just targets non-structural proteins and like doesn't give you superpowers. So to see a "similar" method was exciting.

I felt like there was an area where they played it safe...

Deadpool also reflects a modern dilemma with healthcare. The movie only touched on the overwhelming amount of options and information available for cancer treatment. To be able to give a patient's view of the process and financial turmoil, would have been so impactful. With a spokesman like Deadpool, the ability to critically poke at it without being too serious is a powerful superhero advocate.

There are plenty of movies that do as good a job or better, but there none of those grossed over a hundred and thirty million on their opening weekend. So...

Watch it. Watch it again, while eating a Chimichanga.

Monday, February 22, 2016

Zepatier Part Ugh

Olysio, Sovaldi, and Harvoni

I have spent the better part of this past month re-writing this post, and on March 11, i will find out much more.
Because I legitimately don't know how to properly convey my despair and disappointment and fear at what will soon unfold.
I had been eagerly awaiting the release of Zepatier,  the announcement last month was terribly exciting.
Zepatier is a Hep C drug that deals with NS5A resistance,has a very high success rate, and is almost half the price of the leading treatments Harvoni and Sovaldi.

It's amazing, and it has shown to work very well in other harder to treat cases.

The drug has one small hitch.
Well, i think it kinda sucks like... a lot.

The contraindication does have a rationale beneath it.
In 1% of cases ALT levels raised 5X within in the first 8 weeks, Clearly, an indicative factor of a problem.

Unless it isn't.
Which it isn't.
Most instances self corrected soon after:

In fact the contraindication seems odd considering the big new DAAs carried no such contraindication:

So... Now it's time to figure out how the hell I get this drug, because I suspect this will be my last treatment. success or failure.
Further research should show it's true efficacy, which i feel will reflect poorly on Zepatier if the drug is prioritized because of its price-point rather than it's efficacy.

Thursday, January 28, 2016

Edges and Pills

As 2016 began I was excited to be defining my timeline for treatment soon. However, my early morning appointment with the doc turned out to be less exciting. She answered my questions as best she could however the FDA had yet to release that information: Zepatier is still waiting.

In Canada, the drug was recently approved. This by no means necessarily speaks to any superior efficacy, merely different timelines and different standards. (California has three million more citizens than Canada, smaller governments can act faster.)

Normally we would proceed with an off label prescription, however Zepatier is a new drug not a new combo of drugs.

Sometimes with Hep C (HCV) meds combination uses are FDA recommended. If they're not, then it can be harder to get them approved from an insurance company. In 2014 Sovaldi and Olysio were approved separately, however their use to treat HCV as a combination took an additional set of studies which was approved later. I took the combo two months prior to its FDA approval because of the 'off label' option.

In the case of Zepatier it has not been approved and since it is not a combo therapy it cannot be prescribed 'off label'. I can hope for a trial while I wait, but other than that I really have no options yet.

Treatment is part of what I need to do to get healthy. Treatment can cure me but it can't heal me, the exhaustive damage to my liver I've already sustained is enough to very nearly kill me. My liver doesn't have long, maybe a year or two if I'm lucky. So treatment is really only part of what I have to do to survive this.

This is an outline of the major sectors I'll be focusing on as I go through treatment:
Nutrition- Low Sodium, High protein diet with liver friendly foods.
Exercise- 1-2 hours per day 1/2 cardio, tone down existing program: P90X.

P90x is workout regimen for those already in shape. I have spent the last 3 months doing a combination of low impact work-outs and walking (at first only about a mile a day, but now near three months later I average 5 miles per day.) Even though I'm better off than I was a few months ago, doing P90X is no cakewalk. It is an intense as you need it to be, which is why I like it.

Social- Connect deeper with friends by learning more about them.
Emotional- Talk to others about experiences, and complete goals.

As I implement these changes in my life I will be logging my physical and emotional state during treatment.

The doctor's visit was not without good news however, as my MRI results are fine: thankfully no cancer. Most everything else seems to be in good health, which is always relieving to hear.

With no knowledge of when I start treatment, it's going to make dating with Hep C that much more complicated.
Wait, what? Dating? What about health, treatment and focusing on all of that....
Yea, Dating. I'm 29, so it's part of my life and one I shouldn't ignore. I've learned from the emotional stress and depression of my prior treatments.

It's important to keep close the people and things that make us feel alive.

What composes us makes us wonderful but definition is found at the edges, in differences and limitations. Edges are the best place to build, it may require a little more balance but to expand the horizon is something uniquely human.