tag:blogger.com,1999:blog-51878602482506812782024-03-13T04:15:34.937-07:00C Anything But AverageFive failed treatments and a Liver Transplant brought to be cured by my Sixth treatment!
Follow me @HepatitisMe on Twitter
DefNotRickNash on InstagramRick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.comBlogger145125tag:blogger.com,1999:blog-5187860248250681278.post-9822019948456557692018-01-26T10:30:00.000-08:002018-01-26T12:59:08.637-08:00Mario is free to use the now empty Hep C pipeline<div class="MsoNormal">
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Although, based on his history of drug use he's more inclined to die from eating the wrong mushroom than from Hep C, but I digress.<br />
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Since 2011, DAAs have been coming down the Hep C pipeline, until now. 2017 marked the year where announcements of new meds not only slowed its pace, but many were cancelled. Janssen, as of Sept. 2017 discontinued use of Olysio, a DAA which acted as part of a combination therapy, the only lone <a href="http://canythingbutaverage.blogspot.com/2015/05/host-with-most-am-i-cured-already.html">NS3/4 Protease inhibito</a>r. Without a unique NS3/4 inhibitor, combination therapies will be more likely to include combination meds like Harvoni. Most meds target the NS5a or NS5b cleavage point, which means when a patient has RAVs which prevent that protease inhibitor from working at that cleavage point, it becomes harder to target the virus.<br />
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As Gilead and AbbVie continued to push on with newer iterations of their Hep C treatment meds, Merck abandoned two drugs which were currently in the Hep C Pipeline. At an 8 week price point of $26,400, Mavyret is dragging Gilead's Vosevi and Epclusa to push not for lower prices but shorter treatment durations to lower the price point to insurers. Merck's treatment is still standing at its 12 week price point of around $54,000 making competition with the Pan-genomic Mavyret almost impossible. Mavyret contains an NS 3/4 and an NS5a inhibitor, whereas Epclusa targets NS5a and NS5b cleavage points. These subtle differences have an impact on patient efficacy due to RAVs which affect these cleavage points. <br />
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The empty pipeline means that if a cure cannot be found within these combinations insurers decide, then patients may die. As with more 2 in 1 pills like Epclusa and Mavyret, it will become harder for patients to find individualized therapies.Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-22760997374777255452018-01-25T11:49:00.002-08:002018-01-25T11:49:36.019-08:00How the Pharma War for Hep C could affect treatment outcomes.<div class="MsoNormal">
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Pharma drug wars these days make headlines for typically nefarious reasons.<br />More typically when Pharma companies are turned into pieces of an investment machine and no longer commit as much energy to research* and instead focus on paying their investors.<br /> <br /> The Hep C drug market was blowing up from 2014 until 2016, 2017 saw some of the largest halts in manufacturing of treatments. But with an estimated five million Americans yet to be cured, it's not a lack of demand that does it. <a href="http://www.janssen.com/janssen-discontinue-hepatitis-c-development-program">Janssen, as of Sept. 2017 discontinued </a>use of Olysio, a DAA which acted as part of a combination therapy, <a href="http://canythingbutaverage.blogspot.com/2014/06/resources-i-mined-too-much-vespene-gas.html">one I took back in 2014.</a><br /><br />Merck having finally rejoined the game, made headlines with its price cutting Zepatier. As Gilead and AbbVie continued to push on with newer iterations of their Hep C treatment meds, <a href="https://www.reuters.com/article/us-merck-co-hepatitis-c/merck-to-stop-development-of-hepatitis-c-treatments-idUSKCN1C41QD">Merck abandoned </a>two drugs which were currently in the Hep C Pipeline. At an 8 week price point of $26,400, Mavyret is dragging Gilead's Vosevi and Epclusa to push not for lower prices but shorter treatment durations to lower the price point to insurers.<br /> <br /> The economic constraints which control these drug prices have little to do with consumer needs, they're based on acceptable prices by insurers. Which means that the lowest price to them, is what will reign. Without going into the complex nature of these kickbacks and relationships, the bottom-line is that <span style="font-size: large;"><b>insurers aren't picking the best meds for their patients.</b></span><div>
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Well at least they're FDA approved</div>
<br /> Each of these combinations has a different efficacy based on that person's genotype and subtype, and while Epclusa and Mavyret are both touted as pan-genomic, they lack the core mechanisms to back up that claim. Having looked at Epclusa's Mechanisms, both of my doctors and myself were leery to go on it having failed Harvoni. When someone fails treatments they develop a type of resistant polymorphism, or RAVs. These RAVs make the claim of Pan-Genomic treatment impossible from the get go. RAVs often develop during a treatment, which causes a person to fail the treatment. The issue at hand is that shorter treatments more typically work for newly diagnosed and patients who haven't developed into <a href="http://canythingbutaverage.blogspot.com/2015/04/if-this-title-were-pattern-it-would.html">F2 Fibrosis</a>. But patients which more fibrosis run the risk of developing RAVs as they need longer treatment durations. This comes with a challenge when a doctor requests a 12 week round for a patient, and is approved for 8. <br /><br /> What this leads to is, exactly how I was approved: <b>Off-Label approval</b>. The doc can request the same meds as Off-label and have more control. The downside is that it requires a savvy doc and it is rarely extended. This means that people who need meds who don't have a solid relationship with their doc, or don't have a committed doc, <i>they might not get the right treatment.</i><br /> <br /><span style="font-size: large;"> With <a href="https://thenasheffect.wordpress.com/2018/01/25/the-collapsing-tunnel-of-healthcare-premiums/">insurance premiums on the rise</a>, it's hard to say how many insurers will carry more than one option in the future. </span><br /><br /><span style="font-size: x-small;"><br />Research* is primarily paid for via government grants, smaller labs usually do most of the leg work and are acquired by larger manufacturers who have both the means of production and sales channels, but seldom devote time or money to research of their own beyond required government tests.</span></div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-39500976847948977272017-09-08T11:05:00.000-07:002017-09-08T11:05:14.065-07:00Oh God<br /><span style="font-family: Arial, Helvetica, sans-serif;">In 2011 I noticed a familiar feeling in my throat and a lightheadedness that comes from anemia. <br /> <br /> We rushed to the ER. A line of people sat waiting while I turned pale on one of the few remaining chairs. My brows furrowed and struggled to hold back something deep in my stomach. "I need a bowl" I asked the nurse at the front. She would regret the speed at which she retrieved it. Moments later bowl in hand I began to projectile vomit all over the ER. a steady stream of red blood bounced into the bowl and onto the floor. <br /> <br /> Suddenly I wasn't in line anymore.<br /> <br /> I would proceed to lose more and more blood over the next few days as they fit me for a 16 gauge to transfuse some B+ blood. I had little idea how close to death I was. The upper endoscopy allowed them to tie off the multiple bleeding varices and days later I would have to end my third treatment. It was my second brush with death. My mother had always hoped that my experiences might bring me closer to God.<br /> <br /> My uncle being a Reverend, Priest and Monk she thought that maybe I would be involved some way with the faith. But no matter how close I came to death, no matter what miracles, coincidences or events would occur, my faith wouldn't change.<br /><br /><br /><b> To others with HCV, to my fellow dragonslayers,</b><br /> <br /> When we are faced with our mortality we can choose to see things as they are. To abandon our perception, as best we can. For some that comes through faith. But it doesn't matter how you find it, it's the same understanding.<br /> <br /> We are small, that the collective whole of us will always determine our fate. But it is that humility that allows us to grow. Because when we see ourselves as the very small things we are, we can seek the largeness of joining others. With others we can become truly larger than life. Faith provides us with a map to humility and strength through restraint. Some of us prefer to wander and blaze our own paths.<br /> <br /> If you find yourself questioning your faith, it's nothing to worry. We're all still in the same place, find the path that helps you.<br /> <br /> Do not burden yourself with the worry of abandoning your Creator, or adopting a new faith. Some may view this as a test of faith, others as proof there is no God.<br /> <br /> They can't both be wrong, but they can both be right. Whatever conclusion you come to, the thing that matters is that you have a dragon to fight. And it demands your attention.<br /><br /> So take the shield that friends and family can offer, the sword from your doctor, and what courage you have and fight. Hope is for those who cannot fight themselves. You can, and you must.</span>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-41896367009462392017-04-24T16:36:00.000-07:002017-04-28T16:27:24.669-07:00A look inside me.Well, what I used to be.<br />
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The images below are of my former liver, the damage of thirty years of Viral Hepatitis C (HCV).<br />
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The images are graphic, so please be warned now, they are unlike anything I have ever posted before.<br />
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These images are of me and as such I am the original owner and retain the rights to circulate the images as I see fit. If you would like to borrow the imagery, please ask.<br />
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In honor of National Donate Life month, This is why i needed a transplant liver.<br />
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This was my liver's limit.<br /><br />This is what a healthy liver should ideally look like:<br /><a href="http://3.bp.blogspot.com/-7Kkd0Yxu0RE/WQPPmG-pQJI/AAAAAAAABBM/iZEsLYC1gTQNut65K5khwujnZUm1lB6cACK4B/s1600/Healthy-Human-liver.png" imageanchor="1"><img border="0" height="280" src="https://3.bp.blogspot.com/-7Kkd0Yxu0RE/WQPPmG-pQJI/AAAAAAAABBM/iZEsLYC1gTQNut65K5khwujnZUm1lB6cACK4B/s400/Healthy-Human-liver.png" width="400" /></a><br />
<br />Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com9tag:blogger.com,1999:blog-5187860248250681278.post-39100918517243283182017-03-31T19:28:00.001-07:002017-03-31T19:28:18.785-07:00Resistance profile<p dir="ltr">This is why five treatments failed.<br>
This is my HCV RAV list.</p>
<div class="separator" style="clear: both; text-align: center;"> <a href="https://lh3.googleusercontent.com/-TUHo4fcvuE4/WN8QQiCDtYI/AAAAAAAAA_A/MaBp6f_A1p8/s1600/IMG_20170128_080224.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"> <img border="0" src="https://lh3.googleusercontent.com/-TUHo4fcvuE4/WN8QQiCDtYI/AAAAAAAAA_A/MaBp6f_A1p8/s640/IMG_20170128_080224.jpg"> </a> </div>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com6tag:blogger.com,1999:blog-5187860248250681278.post-319791855578161822017-03-14T21:29:00.000-07:002017-03-15T12:49:32.197-07:00Zero<br />Not the ghost dog from Tim Burton's The Nightmare Before Christmas.<br />Although that is one of my favorite Disney movies.<br /><br />The reason why it is one of my favorite movies is because Jack Skellington (the main character) struggles with not only his own identity, but that of the town's. He was trapped in Halloween Town until he followed Zero out into the woods.<br /><i><br />He needed Zero to nudge him in the right direction.</i><br /><br />Zero, helped him overcome the fog, even though it would ultimately crush him, he rose from the wrecked attempt to revitalize himself and his town.<br /><br />He rose to ultimately find a new identity, separate from the darkness he found within himself. It was his failures that gave rise to his success and it all happened because of a Zero.<br /><br />To understand why this antihero means so much to me, isn't so hard.<br /><br /><i>Monday, March 13th, 2017 I found out I have an undetectable viral load, in other words, a Zero.</i><br /><br />I've followed my Zero before, and I've crashed, but now that I've risen from the graveyard so to speak (Shit, I left that part out, this is why I'd be a terrible narrator, anyway so Jack gets shot from the sky and ends up in a graveyard where he reflects on his failures and saves Christmas. Even though he kinda wrecked it in the first place, the point is that the graveyard is where he did it. Okay, back to the emotionally charged story of rebirth and all that.)<br /><br /><i>My Transplant gave me time to reflect,</i> (Yea, I had one of those, I'll tell you about it sometime... It's a long story) <i>it gave me a renewed energy to take on what I want from life</i>.<br /><br />Like Jack I'd resigned much of myself to the darkness, hope is always there but my last few months felt more like acceptance than hope.<br /><br />My transplant changed that, but it didn't shake the underlying problem. I still had HCV. A little over six weeks prior to my Zero, I began a combination treatment of Sovaldi, Zepatier, and Ribavirin. <br /><br />Now I'm here again, following my Zero into the night. I know you've probably been waiting for the happy ending but I'm sorry about how long this movie is, 86 minutes just isn't enough time. <br /><br />I've put on thirty five pounds since December, It only took me a month after the transplant to start dating again, and for the most part I assume this is what normal feels like.<br /><br />But this is where the rebirth thing changes.<br /><br />Because I need your help.<br /><br /><span style="font-size: x-large;"><b>You.</b><br />Specifically.</span><br /><br />I wrote a lil bit about how the ACA saved my life, but it's more than that.<br /><br /><br />The <a href="http://healthaffairs.org/blog/2017/03/07/examining-the-house-republican-aca-repeal-and-replace-legislation/">proposed replacement</a> will create brackets of insolvency. If you are sick, you will eventually find yourself facing exponential cost increases as time goes by.<br /><br />Unless you happen to make over 250k per year.<br /><br />If you find yourself in delinquent medical debt, the biggest benefit of the AHCA(the ACA replacement;) the Health Savings Account increases, suddenly become useless.<br /><br />Last year my medical costs consumed ~35% of my income. This year, because of Medicare I'm looking at ~20%, next year I will no longer be on Medicare.<br /><br /><br /><b>If the AHCA(the ACA replacement) passes I will see my healthcare costs rise to 50-60% </b>of my annual income.<br /><br />The reason for its variability is because with no mandate, insurance premiums will rise and the proposed tax credit doesn't even touch me because I barely make enough income to be taxed as it is.<br /><br /><i>It drops Medicaid eligibility to 100% of the poverty rate</i>, its static tax credit doesn't lower premium costs for anyone who actively uses insurance. <b>The 30% continuation fee creates no incentive to buy insurance because its threshold is too variable to have any form of consistent applicability. </b><br /><br />If you make 18,400 and pay $59 per month for a bronze plan, that plan increases in price to $270. If you are 29, you can receive a $2,000 tax credit, at that income you'll max it out, assuming you have no other deductions or credits. T<b>he cost is comparatively $708(under the ACA) vs. $1240(under the AHCA) annually.</b><br /><br />This also doesn't assume out of pockets that can max out under deductibles, which historically speaking increase when there are less payers and more risk per payer, nor the increases in premium pricing, nor the unusual requirements for maternity and abortion exclusion policies, ad nauseam.<br /><br /> (Why did I go with 18,400? Because that was my annual income whilst attending college, most articles focus on how this affects the elderly and the sick. And while it affects them absurdly more I wanted to show how it affects an average college kid as well. I didn't bother with gender because of a weird disparity: women use medical services more often than men although men tend to need more services than women over their lifetime. With that I'm going to assume that minimal bronze level care is all that's needed.) <br /><br />Why average? Because healthy is rarer than having an illness or ailment. <br /><br /><a href="http://kff.org/health-reform/issue-brief/how-affordable-care-act-repeal-and-replace-plans-might-shift-health-insurance-tax-credits/">The bill falls short of what it is"replacing"</a> at its most effective point for the average young American.<br /><br /><br />As someone grows older it doesn't scale with any actuarial reality and instead uses ten year age brackets to increase that credit by $500 each time. <br /><br /><br /><b>To make this more penalizing for being sick, the 30% continuation fee is based on your past level of care. So if someone had bronze care at $270, and another person had platinum care at $460 they would pay $81 or $131 respectively.</b><br /> <br /> The bill also suggests that this amount is<i> to be charged on a monthly basis transforming a penalty of a few hundred dollars to nearly a thousand dollars annually on the low end. </i>That money no longer goes to pay for the system but rather instead to insurers for what I can only describe as faith-based economics. the only principle that could possibly support this is that we should trust an insurance company to lower prices now that they're making more profit. Certainly it's easy to see why I call this faith-based economics. <br /><i><br /> But here's where it gets really weird.</i><br /><br /><br />So how does that work when you fall at 101-136% of poverty. Because Medicaid will no longer be covered for the near poor under the AHCA. Will the states arbitrarily determine how that continuation fee is levied? Will they use their MCO(managed care organization) to determine that rate?<br /><br />Because the bill fails to correctly qualify this there will be countless legal disputes attempting to resolve it.<br /><br />As the bill stands now, there is an incentive to avoid the fee entirely if a person does not have insurance. Because the incentive of the continuation fee does not apply to them until they obtain coverage.<br /><br /><i>This means that it actually disincentivizes health insurance for those who are currently uninsured.</i><br /><br /><br /><span style="font-size: large;"><br /><b>We can do better. Remind our representatives that we must do better.</b></span><br /> <br /><a href="http://www.house.gov/representatives/find/">Contact your Representative </a><br /><br /><br /> <a href="https://www.senate.gov/senators/contact/">Contact your Senator </a>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com9tag:blogger.com,1999:blog-5187860248250681278.post-69817644209543062012017-03-10T11:31:00.001-08:002017-03-10T11:31:53.409-08:00Sequitur<p dir="ltr"><u><u>My</u></u> mind and heart are <i>racing</i>, but they'll be no winner.</p>
<p dir="ltr">Waiting for a phone call that will determine your life is <i>nerve-racking</i>.</p>
<p dir="ltr">I've been here before.<br>
<i>Too many times</i>.</p>
<p dir="ltr">Every treatment is terribly exciting, because it <b>could</b> cure me. But based on my experience, <i>it won't</i>.</p>
<p dir="ltr">There is little I can do to help the process, little I can do to find out what's going on.</p>
<p dir="ltr">I suspect that the reason I don't get anxious in most things, is because I'm so focused on this. I've learned to calm my mind, and ease my heart.</p>
<p dir="ltr">But there are moments that bend me out of joint. I've waited for phone calls for years:</p>
<p dir="ltr">"<i>I'm sorry</i>."<br>
"It can't be helped."<br>
"<i>They'll be another one</i>."<br>
"There always is."</p>
<p dir="ltr">The <b>struggle</b> is remembering that it's not me. It's something that happened to me.</p>
<p dir="ltr">In many ways my formative years developed around the notion that because of it, people treat me differently.</p>
<p dir="ltr">But I wish that were my only problem, because that I can deal with, I can affect. </p>
<p dir="ltr">But this.... <b>I can</b>'t. </p>
<p dir="ltr">Information is my tool for <i>success</i>.<br>
But it's a double-edged sword.<br>
The more I know, the more I understand my limitations.</p>
<p dir="ltr">Every treatment means four chances.<br>
But I've <i>never</i> been past my first chance.</p>
<p dir="ltr">To seize that feeling when I know my existence isn't burdensome. Was a <i>flicker</i> for brief moments in my life.</p>
<p dir="ltr">To say that <i>depression</i> follows right behind me doesn't give the <i>stigma</i>, the <i>ailments</i>, the <i>fear</i> a standing chance.</p>
<p dir="ltr">I grew up with this idea that <b>I walk beside</b> <b>death</b>. And he's been my least favorite friend this entire time.</p>
<p dir="ltr">But he's followed by something too.</p>
<p dir="ltr">What is harder to see is that <b>hope, clarity, friendship and joy</b> follow him.</p>
<p dir="ltr">Which means they're <i>right here with me</i> just as close as the others. But if I don't​ adjust my perspective, the angle makes them appear farther away, like a <i>sideview mirror.</i></p>
<p dir="ltr">But they're here, I just have to <b>remind</b> <b>myself</b>.</p>
<p dir="ltr"><i>They're always here.</i></p>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com5tag:blogger.com,1999:blog-5187860248250681278.post-67688135414316063122017-02-10T12:14:00.000-08:002017-02-10T12:18:55.220-08:00This isn't an interview: Me to me.My name is Rick Nash, as I write this, I am thirty years of age and soon I'll be one year older. <br />
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This birthday is special to me.<br />
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Because it is one I didn't expect to necessarily have.<br />
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When I was in summer of my seventh grade year, I was diagnosed with Hepatitis C ( HCV.) One of the key elements I took from that doctor's appointment was that I would need a transplant around 30, or die. And given the knowledge he had and the virility of my, to be later understood as, variant strain, a transplant would only extend my life a short period of time.<br />
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It was a prediction that I have fought against my entire life. Two months ago, I received a liver transplant. And presently I am on treatment for HCV, my viral load fell from 100 million to 33,000 at present following four days of treatment.<br />
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I am not yet out of the woods, but I'm better off than he predicted. Because he also believed that my state would be far more impacted by the virus.<br />
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I stay healthy otherwise, and a life of keeping myself that way has helped me survive. But by no means could I be writing this now without the support of others near and far. <br />
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<b><i>So this isn't an interview, it's just a format to help isolate certain issues, but what are we talking about?</i></b><br />
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Presently we are in dire straits politically, and many don't understand just what the stakes are.<br />
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I'm talking about the ACA aka Obamacare.<br />
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First off, I want you to know that I am biased. After all without the ACA, I wouldn't be here. To make this more complicated I'm going to state that I'm a registered Republican, always have been. In fact, I come from a line of Republicans, my family has been here since Coolidge and I take pride in this.<br />
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So we're essentially talking about how the ACA/Obamacare saved my life.<br />
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<b><i>You've had a preexisting condition your entire life, one that insurance companies actively prefer to deny treatment for, how has that impacted your life?</i></b><br />
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I've been aware of healthcare policies and health insurance since high school. I learned how to understand benefits from my mom, who has worked in HR for as long as I've been alive. My senior year in college I began looking for a job that would give me the benefits I needed. I focused more on benefits packages than compensation, because of the high costs I would pay otherwise. <br />
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My first failed treatment in 2008 showed me the price to lose insurance. That treatment would have cost me over $60,000 even having failed and stopped halfway through. I graduated in 2008, and like many others at the start of the recession, finding any decent paying job was a challenge. <br />
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When I graduated I realized that I would need to stay in school full-time until I could get a job to so as to not lose health insurance. So I enrolled in classes and worked 25-39 hours per week. When I found an available promotion, I seized it. I took a chance and began a second treatment, and while I was working 39 hours a week and making a living wage, in order to have benefits, I still went to school full-time. <br />
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I was lucky in that four months before I turned 25( my parents' insurance had a policy that allows students under 25 to be on their parents' plan) I managed to find a job with benefits.<br />
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That next year in 2011, I planned on starting treatment. With a solid job I could try the one that would eventually cure my mom. But a week before an <a href="http://canythingbutaverage.blogspot.com/2015/06/theyre-gonna-shove-what-down-by-throat.html">esophageal bleeding episode</a> would send me into the hospital, I was pink slipped. To make this more confusing, it would be recalled, and sent again twice. <br />
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After receiving my <a href="http://canythingbutaverage.blogspot.com/2015/04/ill-stop-world-and-meld-with-you.html">MELD Score of 14</a>, I began to look for a new job. Thankfully my friends knew of an opening and I started later that year. <br />
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There was one problem. The company used a temp service to hire its own employees allowing them to bypass benefits. Using a temp agency like this is common, and lives in a legal gray zone. The temp agency can't exclusively cater to one company and/or be owned by the company. <br />
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Thankfully the ACA stepped in twofold: it extended my coverage until 26, and my preexisting condition was no longer a coverage concern.<br />
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That being said, the ACA was new and still very shaky, and insurance companies can retroactively deny coverage.<br />
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So I prepared myself for a potential situation wherein the ACA is repealed and my insurance retroactively kicks me off of it, using my preexisting condition as a reason.<br />
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What this meant for me is that I would need to use COBRA to extend coverage until I would start my new insurance in April. So for two months I would see nine hundred dollars a month fade away into nothing to insure my insurance would still carry me.<br />
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<b><i>What would have happened without the ACA?</i></b><br />
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Without the ACA I would presently still be in debt from a six month coverage gap. Because as I would begin my new job, my left femur was injured in a car accident. While her insurance covered the losses, it was reimbursed months after the collision. I would not have been able to cover my medical bills, or any other incidentals. <a href="http://www.medpagetoday.com/Gastroenterology/Hepatitis/44357">My HCV treatment without insurance was over $100,000 </a>and the medical care otherwise meant I hit max out of pocket on a yearly basis.<br />
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Meaning I would have no choice but accumulate unpayable amounts of debt with the hope that bankruptcy could possibly save me. Thus limit my housing options, my ability to cover future medical costs, and any potential use of my economics degree. Essentially a recipe for homelessness. <br />
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Thankfully, the ACA does exist, so that didn't happen.<br />
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<b><i>Those two parts of the ACA/Obamacare legislation were vital in your life, how else has it affected you?</i></b><br />
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After the <a href="http://canythingbutaverage.blogspot.com/2012/10/struggle-because-it-proves-youre-still.html">third treatment failed </a>at the end of 2012, <a href="http://canythingbutaverage.blogspot.com/2013/10/bueno.html">my symptoms began to worsen.</a><br />
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Ascities, an extreme form of water retention, became an issue of vigilance. While I was prescribed a solution in the form of diuretics, I would only take them occasionally. Because if I took them regularly, my electrolyte imbalance was such that my legs would randomly spasm out of control. <br />
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I would find a method that would keep me moving and alleviate the issue: Balancing my electrolytes. While I couldn't control how my liver used them, I could make sure I was always consuming a specific amount. <br />
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The ACA required restaurants of a certain size to post nutritional information, and increased requirements on packaged foods. Without that, it would have been incredibly challenging to navigate.<br />
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The amount of magnesium, sodium, potassium, sugar, and water would change, and I learned how to understand each different pain and what it associated with. It took months to find that balance. Unfortunately, <a href="http://canythingbutaverage.blogspot.com/2013_12_01_archive.html">I was terminated at the end of 2013</a>. While the termination was unlawful and discriminatory, fighting it wasn't an option. While I was legally disabled, disability would take time and would not be enough to cover the cost of health insurance. While it did allow MediCal/Medicaid, my treatment wouldn't have been covered under it at that time. So I worked as much as I could, enough to obtain insurance.<br />
<b><br /><i>Wait, you were legally disabled, why didn't you have disability Medicare?</i></b><br />
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When you become disabled, it can take between two and three years until you can have access to Disability Medicare. I guess they hope that you die before you need it. Because, of all the laws and decisions I've read, I can't figure what their rationale is.<br />
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Without a job I was frantically familiarizing myself with Covered California. <br />
<br />
<b><i>Covered California is the California specific version of Healthcare.Gov, the ACA marketplace, there are a lot of mixed feelings about its pricing, where do you stand?</i></b><br />
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First off, the marketplace prices are set by private insurance companies. And because of this marketplace, smaller locally based hospital-insurance hybrids have been growing. The prices are still primarily controlled by two elements: the top four insurers, and the banks that are invested in these insurance companies. <b><br /><br /><i>Sounds like you're into conspiracy theories.</i></b><br />
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Technically, that's what this is, they're conspiring to control prices. We have no way to correct this market inequality besides government action.<br />
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The ACA allowed me access to insurance, and because my income was eligible for the credit I was able to purchase an affordable plan and keep my doctor. <br />
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It allowed me to postpone my death by a year <a href="http://canythingbutaverage.blogspot.com/2014/07/shut-up-shut-up-this-is-my-favorite.html">as I zeroed out on my fourth treatment.</a> The victory was short lived as I hit my out of pocket maximum, a four thousand dollar deductible and a week in the hospital after <a href="http://canythingbutaverage.blogspot.com/2014/09/ill-have-turkey-quinoa-wrap.html">a run in with C.Diff at a diner. </a>The treatment had failed and the virus was back in the millions. <br />
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Thankfully, I soon began a fifth treatment. The year ended and new insurance plans came up, the one I was on previously was shuffled a bit so they could legally increase the price. <br />
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The plan increased in price by about forty dollars per month, a 13% increase with few noticeable changes in benefits. While irritating and burdensome, it was still far better than the alternative. Each of these treatments combined cost me out of pocket only about $12,000. Which may sound absurd for an effective income of $18,000 per year but remember that without it, if I could even get the treatment, I would be out over $300,000 on treatments alone.<br />
To date my cumulative bill to insurance total is approaching six million dollars.<br />
TIL: I'm not a cheap date.<br />
<i><br /></i>
<b><i>It was worth it though, you were cured, right?</i></b><br />
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No,<a href="http://canythingbutaverage.blogspot.com/2015/05/bad-news-for-people-who-like-good-news.html"> the fifth treatment failed</a>, and within a year my liver went from an average MELD of 20 to 30. I was steadily dying, and it was visible. To hide the jaundice I maintained a tan; however, by June the jaundice made me look more orange than anything else.<br />
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My treatment was postponed as I was no longer allowed treatment <a href="http://canythingbutaverage.blogspot.com/2016/08/deviated-september_30.html">due to my high MELD</a> score, and so I waited by my phone. I had been on the transplant list nearly three years by this point and only received <a href="http://canythingbutaverage.blogspot.com/2015/11/the-transplants.html">two calls </a>before September of last year.<br />
<br />
<br />
Before I would be between hospitalizations near the end of the year, my Disability Medicare finally came in. While it is more expensive per month than my previous plan, I was able to have three weeks of hospital stays, a week of at-home nursing, and dozens of RXs taken care of for very manageable copays... Oh, also a liver transplant and subsequent medication.<br />
<b><br /><i>It sounds like the ACA was the bridge before Medicare for you, was that always the plan?</i></b><br />
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No, no one means to be sick, I did everything in my power to live and utilize the tools I had access to. I didn't want to get to the point where I needed Medicare. But I can say this comparatively, having it is one of the most relieving insurance plans I've had. <br />
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<b><i>So you're alive today because of the ACA and Medicare, how do you feel about the repeal and replace?</i></b><br />
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I'm interested to watch as the GOP replaces The ACA/Obamacare with The ACA/Obamacare or Ryancare. <br />
<b><br /><i>Don't you mean Trumpcare?</i></b><br />
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No, Trump has nothing to do with helping anyone but himself, while I disagree with Paul D Ryan on most things, he is the congressman who will craft a replacement. <a href="https://krugman.blogs.nytimes.com/2011/06/03/ryancare-versus-obamacare/?_r=0">He has been at the head of this opposition </a>since the ACA came into being. <br />
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Like the Sanders v Cruz debate, the GOP wants to keep things vague, they don't stand for anything until the day they vote. Unless they author/co-author legislation. It's their M.O. because if you haven't taken a stance, citizens are less likely to be angry with your decision.<br />
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The new Right to Try legislation will most likely fuse into an Obamacare replacement.<br />
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We can change this, we can make sure we have a good healthcare system. Just call your local Congressperson and/or Senator and tell them what you like or don't like about the ACA/Obamacare. <br />
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A legal document must be read through and through, to understand it's gravity. I say gravity because it doesn't just affect its intended target, it affects everything around it. The ACA aka Obamacare is one of the most powerful pieces of legislation I have seen in my lifetime. It saves lives, improved lives, expanded Medicaid to millions and expanded potential millions of dollars in productivity while decreasing the reliance on (medical bill related) bankruptcy.<br />
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After all, a healthy workforce earns more, spends more, and lives longer.</div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com3tag:blogger.com,1999:blog-5187860248250681278.post-57487298059901685732016-10-10T11:16:00.001-07:002016-10-11T10:41:49.907-07:00Salternatives<div class="separator" style="clear: both; text-align: center;">
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Damnit, who turned the electrolytes off?</div>
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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 <a href="http://hcvadvocate.org/hepatitis/factsheets_pdf/cirrhosis.pdf">my consistent return to a decompensated state</a>, the time never seems to be so grand.<br />
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It's become such a theme in my life that <a href="https://youtu.be/rdpBZ5_b48g">I can't seem to kick the Green Day song</a> until it feels like October again. <br />
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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.<br />
<br />
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.<br />
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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. <br />
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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.<br />
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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<a href="http://www.healthline.com/health/hyponatremia#Symptoms4"> sodium was dangerously</a> low, <a href="http://emedicine.medscape.com/article/241893-overview">my calcium was</a> as well, and my ammonia was very high. <br />
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When sodium gets too low it can cause seizures and exhaustion, if it gets too low it could kill me.<br />
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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.<br />
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The interesting phenomenon is that I do not seem to display the typical flapping that occurs with the hands of patients with <a href="http://emedicine.medscape.com/article/186101-overview">Hepatic Encephalopathy</a>.<br />
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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. <br />
<b><br /><span style="font-size: large;"> On Sunday night I had delayed my pain meds to return a phone call.</span></b><br />
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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.<br />
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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.<br />
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I got a call at 10:49pm from transplant<br />
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I explained to transplant that I was presently in the hospital, they said they'd need to speak with a nurse<br />
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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."<br />
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and explained that I need her now. 'immediately as this is a time sensitive matter'<br />
(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.)<br />
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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.<br />
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At 10:51pm I had asked for any available nurse.<br />
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At 11:10pm I again explained the urgency of the situation and explained it once more<br />
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At 11:15pm a CNA came in and I explained the situation AGAIN, and said get me my nurse now.<br />
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At 11:19pm she moseys in.<br />
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I explain the situation to her, her response first was that of disbelief "transplant is calling so late at night?"<br />
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So I told her: yes, that is correct, called them back and handed her the phone<br />
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She read off the numbers to them and then passed me back over<br />
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And they explained that they'd need to transfer me hospitals now.<br />
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*Meanwhile my nurse wanders out*<br />
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Engrossed in the conversation I explained that they should begin the transplant procedures and I would contact my parents to make the decision.<br />
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As I am not in the emotional or psychological state to make this choice.<br />
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As I notice my nurse's absence, I message over that I need my nurse to begin transfer procedures<br />
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And the lady on the end of the call button messages me, "okay why don't you wait to tell her yourself"<br />
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So I tell her <i>NO.</i> <i>THIS IS THEIR NUMBER. HAVE MY NURSE CALL THEM.</i><br />
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The Nurse or CNA on the call button begrudgingly wrote the number down.<br />
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I contacted my parents, and after about 15 min of deliberation both say no.<br />
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So I call transplant and cancel the request then call my nurse over the button<br />
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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.<br />
I took down notes using my call log as a time log to note who I talked to/when. <br />
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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.<br />
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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.<br />
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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.<br />
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Too much protein builds up ammonia, which causes hepatic encephalopathy in those with decompensated livers. <br />
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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. <br />
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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.<br />
<b><br /> Reluctantly I began taking this new pain med.</b><br />
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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.<br />
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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.<br />
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<a href="https://www.instagram.com/p/BLM0DOzh5VR/" style="color: black; font-family: "arial" , sans-serif; font-size: 14px; font-style: normal; font-weight: normal; line-height: 17px; text-decoration: none; word-wrap: break-word;" target="_blank">Home! Even when you've got highways for veins, people can still miss. I'm out of the hospital. My sodium and calcium levels were dangerously low. As a cirrhotic liver patient it's important to watch my electrolytes like a hawk. As my liver had a very sudden about face regarding it's sodium needs. Magnesium and potassium via IV burns, especially if the IV isn't a great stick to begin with. #HCVME #blood #electrolytes #liver #cirrhosis</a></div>
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A photo posted by Rick Nash (@defnotricknash) on <time datetime="2016-10-05T23:47:17+00:00" style="font-family: Arial,sans-serif; font-size: 14px; line-height: 17px;">Oct 5, 2016 at 4:47pm PDT</time></div>
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<br />
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. <br />
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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. <br />
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<span style="font-size: large;"><br />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. </span></div>
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Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com2tag:blogger.com,1999:blog-5187860248250681278.post-45106478447539209772016-08-30T14:17:00.003-07:002016-08-30T14:23:35.012-07:00Deviated September<span style="font-family: Arial, Helvetica, sans-serif;">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.<br /> (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!)<br /><br /> 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.<br /><br /> In one day I switch insurance plans, the present Gilead plan offers mysupportpath to be used twice.<br /> This is my third Gilead treatment, so it's hard trying to lobby for support.<br /><br /> 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.)<br /><br /> If the stop order isn't removed I will have to go through the hoops I just went through before getting access to treatment.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /> It's about time.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /> That's what I'm losing. I'm at a point where each week that my liver continues to degrade I get worse off.<br /> The weeks I lose waiting for treatment aren't just the time now, it's less time later.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /><br /><br />To savor every day that I have, that is all i can do.</span>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-16393664185047273812016-08-09T21:43:00.000-07:002016-08-09T21:43:18.820-07:00Wait and C againI'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.<br /><br /> 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. <br /> I am presently awaiting the Epclusa Treatment. While I've managed to get it approved I happened upon yet another snag.<br /> <br /> 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.)<br /> <br /> 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.<br /> <br /> Overall the treatments have taught me the power of resilience, humility, and patience. <br /> <br /> As I see it, I've waited my memorable life for a cure, what's a few more weeks?<br /> <br /> To those awaiting treatment, sometimes all your efforts may seem in vain.<br /> Dig deep, just a speck of hope, let it grow by holding the hands that help you.<br /> Know that you are not alone, that others can be your champion when you lack the strength.<br /> We may at times come across a canyon too great, but together we can build a bridge.<br /><br /><div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Fun fact: Naomi Judd is a spokesperson for the <a href="http://www.liverfoundation.org/">American Liver Foundation</a></div>
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<br /><iframe width="320" height="266" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/3b-B--gLd4c/0.jpg" src="https://www.youtube.com/embed/3b-B--gLd4c?feature=player_embedded" frameborder="0" allowfullscreen></iframe><br /><br /><br />Also super stoked that the NoHep website launched and the movement is happening:<a href="http://www.nohep.org/"> Elimination of Viral Hepatitis by 2030, NoHep</a></div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-6923695303279467892016-06-07T04:53:00.002-07:002016-06-08T06:13:59.231-07:00Berning UpBernie 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.<br />
<br />
Wait, sorry I messed that up.<br />
<i><br />Oh wait,</i> no I didn't,<i> he messed that up.</i><br />
<br />
This is why I found him appealing as a candidate<b><i>. That his idealistic solutions had tangible form which will usher in an era of liberalism within government.</i><br />This is what I felt walking away from rallies.</b><br />
<br />
But more recently, Bernie released details of his healthcare plan. Which sounds like a wonderful plan.<br />
<br />
But let's really start to give a shit for a second and think about how actually impossible everything he wants to do is.<br />
<br />
Of all the candidates Bernie will face the most opposition. Why? Because without the Millennial vote in tow his political power is moot.<br />
<br />
<i>"That's not true! Older people vote for Bernie!"</i><br />
<a href="http://iop.harvard.edu/sites/default/files/content/160425_Harvard%20IOP%20Spring%20Report_update.pdf">Sure, but by worse margins than the numbers of millennials who support Clinton.</a><br />
<br />
<b> 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. </b><br />
<br />
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.<br />
<br />
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.<br />
<br />
Before I flew up to Sacramento, to speak in favor of an item on the budget proposal allocating funding for HCV testing statewide, <a href="https://www.documentcloud.org/documents/2834677-5-7-16-Press-Release-AIDS-Advocates.html">I read something i couldn't believe. </a><br />
<br />
<b>In talking with other advocates for HIV/AIDs and Viral Hepatitis, I was disappointed to find not a Bernie supporter among them.</b><br />
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.<br />
<b><i><br />Sanders espouses Medicare for all, a single payer plan. </i></b>The type of plan that Sanders would likely install would be <a href="http://krugman.blogs.nytimes.com/2016/01/18/health-reform-is-hard/?_r=1">reminiscent of Canada.</a><br />
<div>
<br />
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. <i>It's not ideal, but it's more responsive, compassionate an patient centered than ANY insurance system we have ever had public access to. </i>It is an adaptation of Kaiser's model, and it works (better than it did previously).<br />
<br />
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.<br />
<b><br /> The politicking insanity of Sanders after Clinton's Nancy Reagan comment:</b><br />
<div>
<br />
<a href="http://www.thebody.com/content/77594/broken-promises-and-bald-faced-lies-clinton-and-sa.html">Girl, look at The Body</a><br />
It works out.<br />
<a href="http://www.huffingtonpost.com/karen-ocamb/hillary-clintons-record-on-aids_b_9463134.html">Sexy, I know it.</a> </div>
<div>
<br />
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,<a href="http://www.huffingtonpost.com/michelangelo-signorile/why-did-bernie-sanders-cancel-meeting-aids_b_9904898.html?"> his/his staff's disrespect towards the HIV/AIDS coalition orgs </a>shows his true colors, but regardless I held my breath waiting for May 25th to see what he would do.<br />
<br />
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<a href="http://www.thepeoplesview.net/main/2016/3/11/hillary-clinton-misspoke-get-over-it-nancy-reagan-hiv"> making some very embellished statements regarding Nancy Reagan's role in HIV/AIDS History </a>)<b> remained the same after Sanders rescheduled meeting on the 25th.</b><br />
<div>
<b><br /> <a href="https://www.poz.com/article/sanders-meets-20-aids-activists"> And then he decided to re-package it...</a></b><br />
<br />
He presents the same stances over and over again, and has demonstrated a general disrespect for the HIV/AIDS community. <br />
<br />
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.<br />
<br />
Millions of Americans have Viral Hepatitis, and thousands of them will die every year regardless of race, creed, political affiliation or income.<br />
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<br />
<div style="text-align: center;">
<b><i><span style="font-size: x-large;">JK!</span></i></b></div>
</div>
<div>
<b><i><br /></i></b> It's absurd how much it resembles a microcosm of the systemic problems within each community it affects.<br />
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.<br />
Because fighting these diseases needs social and emotional support tools as much as it does medical, insurance and pharma reform.<br />
<br />
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.<br />
<div>
<br />
<b><br />In a millennial homage to a questionable DNC nominee:</b><br />
<br />
<i>Outta matches, maybe I'd be better of with a tinder date<br /> heart dropped, shame no profile for this candidate.<br /> Are all he has group photos? It's so hard to pick him out.<br />He'd appeal to our grizzly population posing with a trout.<br />What is this insane lack of respect?<br />I'm off balance, out of checks. <br />Am i missing something, out of conned text.<br />No. Just really about the gender, the sex.<br />I thought he was supposed to be the last of the Silent Generation.<br />And there's hard turns up ahead but less for the white Caucasian.<br />I had the privilege of privilege but it is one voice within a crowd.<br />and we all deserve equal time on the mic, so quiet down.<br />not to be silent but to listen to others, <br />because that's what sets us apart, besides our mothers.<br />When it comes up not down to these perspectives<br />He should understand the model: Respect, Give.</i><br />
<br />
<br />
<b>I can no longer endorse Bernie Sanders.</b><br />
<br />
<a href="http://www.nytimes.com/2016/05/30/opinion/feel-the-math.html?rref=collection%252Fcolumn%252FPaul+Krugman&version=meter+at+1&module=meter-Links&pgtype=article&contentId=&mediaId=&referrer=http%3A%2F%2Fkrugman.blogs.nytimes.com%2F2016%2F01%2F18%2Fhealth-reform-is-hard%2F%3F_r%3D1&priority=true&action=click&contentCollection=meter-links-click">#Berntout</a><br />
<br />
<br />
You can follow some of the more absurd web antics of the clash between Bernie's newest conspiracy theories and <a href="https://twitter.com/peterstaley">HIV/AIDs activist Peter Staley </a><br />
<br />
Sanders is a weak idealistic candidate who has<a href="http://www.democraticunderground.com/12511479828"> little consideration for the communities he represents</a>. <br />
<br />
His narrative is the big picture: (Democratic socialist) <a href="http://prospect.org/article/larger-problems-sanders-single-payer-plan">Idealistic structures </a>that he has mentally concocted over his decades in government can be applied to fix real world issues.<br />
<br />
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.<br />
<b><i><br /> That's why I'm not voting for Ron Pau...I mean Bernie Sanders.</i></b></div>
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Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-46284837638995314362016-05-09T09:14:00.001-07:002016-05-09T09:20:52.444-07:00#Loaners<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In celebration and recognition of Hepatitis awareness month, I made an Art.<br /><br />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."<br /><br />The shoes are worn and weathered by all who've dawned them.<br />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. <br />Reminding me that perspective is just as powerful a force for the one sharing their shoes as it is for the one receiving.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif; text-align: start;"><br /></span><a href="https://4.bp.blogspot.com/-iIVqTzhlSg8/VzC2PHkTYQI/AAAAAAAAAyQ/AziLgIEGXnEK6fNFssXBJ-QtcJk4keAYQCLcB/s1600/IMG_20160508_145057.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="291" src="https://4.bp.blogspot.com/-iIVqTzhlSg8/VzC2PHkTYQI/AAAAAAAAAyQ/AziLgIEGXnEK6fNFssXBJ-QtcJk4keAYQCLcB/s320/IMG_20160508_145057.jpg" width="320" /></a></div>
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><span style="font-size: large;">#SomeoneElsesShoes</span><br /><span style="font-size: large;"> #Loaners</span><br /><a href="http://go.liverfoundation.org/site/TR/LiverLifeWalk2016/PacificCoast?team_id=64402&pg=team&fr_id=5280"> San Diego Liver Life Walk is May 11 Join us !</a></span><br />
<br />
<br />
<a href="http://www.cdc.gov/hepatitis/HepAwarenessMonth.htm?s_cid=hepatitis_001" title="Hepatitis Awareness Month"><img alt="Hepatitis Awareness Month" src="http://www.cdc.gov/images/campaigns/hepatitis/awarenessmonth_211x205.jpg" style="border: 0px; height: 205px; width: 211px;" /></a>
<br />
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<br />
<a href="https://www.thunderclap.it/projects/40870-be-hepaware-thunderclap">JOIN THE THUNDERCLAP</a></div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-9152674218835617012016-04-20T20:01:00.000-07:002016-04-20T20:12:16.995-07:00Is the Titanic technically an icebreaker?<span style="font-family: Arial, Helvetica, sans-serif;">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.<br /><br /><b>In late February I decided to openly display my HCV status on <a href="https://www.okcupid.com/profile/anactualdinosaur">my dating profile</a>.</b><br /><br />Before doing so I took to <a href="http://www.reddit.com/">Reddit</a> for some critiques. Unsurprisingly the voices of strangers echoed the voices of my friends in the leeriness of posting that I have Hep C.<br /><i><br />I am still petrified that they might be right.</i><br /><br />At first I was surprised to see my interactions double, likes increased. I assumed it was in response to my honesty about my status.<br /><br />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.<br /> <br /> 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.<br /><br /><i>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><br /><br />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.<br /><br />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.<br /><br />One of the reasons I'm doing this is because I want my generation to know how prevalent this disease is.<br /><br /><b>I want people with Hep C to know they're not alone.</b><br /> <br /> I want it to be uncomfortable, that's how we change and grow.<br />And to know that after two months of listing my status, my response rates haven't changed... makes me smile a lil bit.<br /> <br /><b> Numbers and Birds for scale:</b><br />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.<br />Normally within a month period (between all apps) 4-5 new numbers.<br /> <br /> 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.<br /> <br /><i> There is something beautiful in finite experiences.</i><br /> <br /> Breaking the ice with HCV isn't all that advisable unless you're very comfortable with yourself and your knowledge of it. <b>Icebergs can still sink a ship.</b></span>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-74261853854865300192016-03-14T06:33:00.001-07:002016-03-14T07:04:43.023-07:00Provocative Statements<div class="MsoNormal">
<div style="text-align: center;">
Pamela Anderson and Kim Kardashian.</div>
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<br />
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
NSFW?</div>
<br /></div>
<div class="MsoNormal">
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.<br />
<br />
Both Pam and Kim recently revealed nude photos in solidarity with the community
they represent.<br />
Kim chose International Women's Day, while Pam chose Hepatitis C.</div>
<div style="text-align: center;">
<i>(selfies and Kim Kardashian's essay located at end)</i></div>
<br />
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.<br />
<br />
I do not make the assumption that the person she presents is the person that
she is. <br />
It's a work face, it's just<a href="http://www.xojane.com/issues/kim-kardashian-nude-twitter"> that her product/brand is Kim Kardashian. </a><br />
<br />
<br />
<div class="MsoNormal">
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.<br />
<br />
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. <b>She fails to see that our assumed prejudices pervert our beliefs until we shift our perspective. </b><br />
<br />
<br />
<i style="font-size: x-large;">The depth and measure of art is not in its
existence, but in the response to its existence.</i><br />
<a href="http://qz.com/598958/the-metropolitan-museum-of-art-confirms-the-selfie-really-is-a-form-of-art/">And the selfie is so art right now. </a><br />
<br />
Thankfully, the gasps from of those with higher moral fiber were<a href="http://www.thesun.co.uk/sol/homepage/features/6995214/Mums-strip-off-to-take-Kim-Kardashian-selfies-to-show-what-real-women-look-like.html"> met with the clash o</a>f the <a href="http://www.xojane.com/issues/unpopular-opinion-kim-kardashian-selfie">stances within feminism</a>. Giving more exposure on all sides...<a href="http://www.telegraph.co.uk/news/celebritynews/12192618/Charlotte-Church-I-regret-defending-Kim-Kardashian-over-naked-selfie-she-is-a-t.html">All the while still promoting Kim Kardashian.</a></div>
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<br /></div>
<div class="MsoNormal">
(Seeing all the reactions to Kim Kardashian's tweet, got me
curious about <a href="https://www.psychologytoday.com/blog/close-encounters/201508/what-is-the-real-link-between-selfies-and-narcissism">the psychology behind it</a>, 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.)<br />
<br />
Compare<a href="http://www.nydailynews.com/entertainment/tv/pamela-anderson-posts-nude-photo-hype-hepatitis-cure-article-1.2427977"> the response to another sex symbol</a> who released a nude on Instagram(IG)
in November.<br />
<br />
Pam Anderson released the nude on <a href="http://www.huffingtonpost.com/entry/pamela-anderson-nude_us_56409b5ee4b0307f2cadf5a6">IG in November to predominately positive responses.</a> <br />
Both women captioned their respective photos, and every aspect of the art in
the photo is undoubtedly their signature style. <br />
<!--[if !supportLineBreakNewLine]--><br />
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<div class="MsoNormal">
<i><span style="font-size: large;">Wait...a second....<a href="http://talkingpointsmemo.com/theslice/inside-instagrams-long-guerrilla-war-on-porn">IG doesn't allow nudes.</a> </span></i></div>
<div class="MsoNormal">
<br />
Pam used it as an opportunity to remark about
how unaffordable the treatment is for the majority of those affected by
Hep C.<br />
<br />
Pam immediately set the tone of her message and her announcement took fresh
advantage from the fall's political rally against pharmaceutical price gouging.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Both used their artistic license to carve a talking point on
a diverse problem allowing more mainstream exposure. <br />
<br />
Advocates and activists used the exposure to highlight key arguments within
their respective communities.<br />
<br />
<a href="http://www.theestablishment.co/2016/03/11/the-real-reason-everyone-freaks-out-over-nude-selfies/">Fantastic commentaries </a>,<br />
<a href="http://www.cosmopolitan.com/entertainment/a55017/kim-kardashian-naked-selfie-empowerment/">Critical receptions</a>,<br />
<a href="http://www.huffingtonpost.com/entry/pamela-anderson-nude_us_56409b5ee4b0307f2cadf5a6">Mainstream exposure</a>,<br />
<a href="https://www.hepmag.com/magazine/hep-spring-2016-special-issue/article/hear-roar">and advocacy</a> </div>
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Oh, and <a href="http://canythingbutaverage.blogspot.com/2016/03/possibly-nsfw.html">me...shit...she's effective.</a></div>
<div class="MsoNormal">
<br />
Since this is art, measuring the reaction within the community is the measure
of the art's success.<br />
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.<br />
<br />
<br /></div>
<div class="MsoNormal">
<span style="font-size: large;">The critiques and responses above exemplify how willing we are
to accept nudity as an artistic statement. </span>Not only in their points but in one
distinct choice. Whether or not to re-share the image.</div>
<div class="MsoNormal">
<br />
For all groups the rationale to use/not use the image is based on readership reception. <br />
<i><br />
After all.... why am I not showcasing both images right now? Because it's
unprofessional.</i></div>
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<i><br />
Scroll down, I put them at the bottom so you can still browse this shit at
work.<br />
<br />
</i>What this reception shows is that sexualized marketing is acceptable
when the subject isn't the artist.<br />
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.<br />
.<br />
.<br />
.<br />
.<br />
...<br />
....<br />
...<br />
..<br />
.<br />
<i>make a wish</i><br />
..<br />
.<br />
..<br />
.<br />
.<br />
.<br />
.<br />
.<br />
<i>send this to 10 people in 10 seconds or your wish will never come true</i></div>
<div class="MsoNormal">
<i>.<br />..<br />.</i></div>
<div class="MsoNormal">
<i>Please</i><br />
Forgive my unprofessionalism </div>
<div style="text-align: center;">
<b>Pam Anderson</b></div>
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<br /></div>
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<a href="https://www.instagram.com/p/9w8WJZiSln/"><img alt=" https://www.instagram.com/p/9w8WJZiSln/" border="0" height="158" src="https://4.bp.blogspot.com/-N7E5brYLD3k/VuaW2Nu3DGI/AAAAAAAAAxg/Um0ZZYlIvNsv-o110GhxfKNKg6Sa5JCxg/s320/pselfie.jpg" width="320" /></a></div>
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<b>
Kim Kardashian</b></div>
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<a href="https://www.instagram.com/p/BCpQBQROS5l/"><img alt=" https://www.instagram.com/p/BCpQBQROS5l/" border="0" height="181" src="https://3.bp.blogspot.com/-bifBUH4gicU/VuaXPXU_5fI/AAAAAAAAAxk/N0U2PtUg5u4CS1LosUcVMfLvirlZ9jleg/s320/kselfie.jpg" width="320" /></a></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Kim Kardashian's Essay</div>
<br />
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.<br />
<br />
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?<br />
<br />
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?!?!<br />
<br />
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.<br />
<br />
Let’s move on, already. I have.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
I am a mother. I am a wife, a sister, a daughter, an entrepreneur and I am allowed to be sexy.<br />
<br />
#happyinternationalwomensday'Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-9087924045086482752016-03-11T21:36:00.001-08:002016-03-11T21:40:19.396-08:00Some Things Considered<div class="MsoNormal">
I am an outlier,</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
But I am happy.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
So after failing Int/Rib/Incivek, Sovaldi/Olysio, Harvoni... I now have three mutations, RAVs. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I am an outlier, but one or two RAVs is common among experienced
patients.<br />
<br />
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.<br />
Daklinza/Sovaldi/Olysio/Riba is another contender.<br />
<br />
(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)</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br />
(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. <i>Fucking Trident has more support
from leading dentists.)</i> </div>
<div class="MsoNormal">
<br />
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.)<br />
<br />
The best drug/therapy to treat should be set by relative efficacy, not by
price. </div>
<div class="MsoNormal">
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.<br />
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<div class="MsoNormal">
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.<br />
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<div class="MsoNormal">
In the meantime later this month I'll be making a trip to
Portland and Seattle. Making stops in San Francisco, and Sacramento.</div>
<div class="MsoNormal">
If you're along the route, ping me! </div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-7688238368735805272016-02-24T23:48:00.000-08:002016-02-24T23:48:20.022-08:00I Heart DP<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-bCHAo7CFcUg/Vs0SUjR025I/AAAAAAAAAw0/FwUTof3tS8c/s1600/10286833_10156522155655183_2656535744314011009_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://4.bp.blogspot.com/-bCHAo7CFcUg/Vs0SUjR025I/AAAAAAAAAw0/FwUTof3tS8c/s320/10286833_10156522155655183_2656535744314011009_o.jpg" width="320" /></a><br /><i>Oh shit, look that's me in there.</i></div>
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<i><br /></i></div>
<div style="text-align: center;">
<span style="font-size: large;">There may be spoilers. Head's up.</span></div>
<div style="text-align: center;">
<br /></div>
<b><span style="font-size: large;"><br /></span></b>
<b><span style="font-size: large;"><i>JK there are totally spoilers. </i>Deadpool Deadpool Deadpool!</span></b><br />
<br />
<i>Is he here? Wait sorry, wrong fictional, fourth wall breaking character.</i><br />
<br />
I wouldn't normally talk about a movie, but this super...hero(?) is important.<br />
<br />
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. <b>He's an antihero.</b><br />
<br />He is known for narrating his own story and breaking the fourth wall. <i>And his superpower of regeneration is from a treatment to cure his cancer. </i><br /><br />
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.<br />
<br />
If we were without the narration, we would see the world as he does and the movie is jarring, confusing and violent. <br />
<br />
<b>Deadpool is a super "hero" for those of us with Chronic Pain, Mental illness, and Cancer.</b><br />
<br />
Deadpool must endure constant chronic pain, due to his ability constantly fighting his cancer. His weapon x treatment also made him <i>a touch</i> psychotic.<br />
<br />
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.<br />
<br />
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. <b>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. </b><br />
<div>
<br />
His sense of humor feels comforting to me because I know <i>that</i> humor. It's a weird self deprecating brink of madness that finds itself in those resilient enough. <b>In a sense it's being jaded by living.</b><br />
<br />
<i>Now on an even more personal level...</i><br />
<br />
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...<br />
<br />
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>I peed a little in excitement.</i><br />
<br />
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.<br />
<br />
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 <i>and like doesn't give you superpowers</i>. So to see a "similar" method was exciting. <br />
<br />
<i>I felt like there was an area where they played it safe...</i><br />
<br />
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 <b>Deadpool</b>,<i> </i><i>the ability to critically poke at it without being too serious</i><b> is a powerful superhero advocate.</b><br />
<br />
<br />
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...<br />
<br />
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<a href="https://2.bp.blogspot.com/-6--8c5Dn2Y0/Vs1p8eECFpI/AAAAAAAAAxI/WAsCi967jLI/s1600/deadpool-chimichangas-imax.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="153" src="https://2.bp.blogspot.com/-6--8c5Dn2Y0/Vs1p8eECFpI/AAAAAAAAAxI/WAsCi967jLI/s320/deadpool-chimichangas-imax.jpg" width="320" /></a></div>
<span style="font-size: large;">Watch it. </span><span style="font-size: x-large; font-style: italic;">Watch it again, while eating a <b>Chimichanga. <br /></b></span></div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-47509270596806520662016-02-22T15:11:00.000-08:002016-03-11T18:33:05.916-08:00Zepatier Part Ugh<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-x5EovrIL7Pc/VsuVFQ7YcKI/AAAAAAAAAwc/u5RFjb2EF_I/s1600/IMG_20160222_150552.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img alt="Olysio, Sovaldi, and Harvoni " border="0" height="240" src="https://1.bp.blogspot.com/-x5EovrIL7Pc/VsuVFQ7YcKI/AAAAAAAAAwc/u5RFjb2EF_I/s320/IMG_20160222_150552.jpg" title="Failed Treatments" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><br />I have spent the better part of this past month re-writing
this post, and on March 11, i will find out much more.</span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Because I legitimately don't know how to properly convey my despair
and disappointment and fear at what will soon unfold.</span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">I had been eagerly awaiting<a href="https://www.hepmag.com/article/fda-oks-mercks-zepatier-grazoprevirelbasvir-treat-hepatitis-c"> the release of Zepatier</a>, the announcement last month was terribly
exciting.</span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Zepatier is a Hep C drug that deals <a href="https://www.hepmag.com/blog/zepatier-need-resistance-testing">with NS5A resistance,has a very high success rate, </a>and is almost half the price of the leading treatments
Harvoni and Sovaldi.<br /><br />It's amazing, and it has shown to work very well in other harder to treat cases.<br /><br />
<b><br />
The drug has one small hitch.</b></span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Well, i think it kinda sucks like... <span style="font-size: large;">a lot.</span></span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The FDA/Merck released a contraindication for the drug for
use with patients who with child pugh score B or C<br />
<br /><a href="http://www.merck.com/product/usa/pi_circulars/z/zepatier/zepatier_pi.pdf">"ZEPATIER is contraindicated in patients with moderate or severe hepaticimpairment (ChildPugh·B or C) due to the expected significantly increased grazoprevir plasmaconcentration and the increased risk of alanine aminotransferase (ALT)elevations" - </a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<b><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">The contraindication does have a rationale beneath it.</span></b></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In 1% of cases ALT levels raised 5X within in the first 8
weeks, Clearly, an indicative factor of a problem.<br />
<br /><b>
Unless it isn't.</b></span></div>
<div class="MsoNormal">
<i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Which it isn't.</span></i></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Most instances self corrected soon after:<br /><a href="http://www.merck.com/product/usa/pi_circulars/z/zepatier/zepatier_pi.pdf"><br /></a></span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://www.merck.com/product/usa/pi_circulars/z/zepatier/zepatier_pi.pdf">"<span style="font-size: 8pt; line-height: 115%;"> </span>During clinical trials with ZEPATIER with or without
ribavirin, regardless of treatment duration, 1% (12/1599) of subjects
experienced elevations of ALT from normal levels to greater than 5 times the
ULN, generally at or after treatment week 8 (mean onset time 10 weeks, range
6-12 weeks). These late ALT elevations were typically asymptomatic. <b>Most late ALT elevations resolved with
ongoing therapy with ZEPATIER or after completion of therapy </b>[see Warnings
and Precautions (5.1)]. The frequency of late ALT elevations was higher in
subjects with higher grazoprevir plasma concentrations [see Drug Interactions
(7.1) and Clinical Pharmacology (12.3)]. <b>The
incidence of late ALT elevations was not affected by treatment duration.</b> <b>Cirrhosis was not a risk factor for late
ALT elevations.</b></a><b><span style="font-size: 8pt; line-height: 115%;"><a href="http://www.merck.com/product/usa/pi_circulars/z/zepatier/zepatier_pi.pdf">"</a><br />
<br />
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<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In fact the contraindication seems odd considering the big new DAAs carried no such contraindication:<br /> <a href="http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/204671s004lbl.pdf">Sovaldi </a><br /><a href="http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/205834s001lbl.pdf">
Harvoni </a><br /><a href="http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/206843Orig1s000lbl.pdf">Daklinza </a></span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><a href="http://www.accessdata.fda.gov/drugsatfda_docs/label/2013/205123s001lbl.pdf">Olysio </a><a href="http://www.accessdata.fda.gov/drugsatfda_docs/label/2015/205834s001lbl.pdf"><br /></a><br /><a href="http://www.ajmc.com/newsroom/comparing-3-direct-acting-antiviral-agents-for-hcv-a-review-of-the-evidence#sthash.mJOyIKru.dpuf">
"</a><span style="font-size: 10pt; line-height: 115%;"><a href="http://www.ajmc.com/newsroom/comparing-3-direct-acting-antiviral-agents-for-hcv-a-review-of-the-evidence#sthash.mJOyIKru.dpuf">Initial analysis of Zepatier’s label showed comparatively fewer AE(Adverse Effects)s (29 vs 41 for Sovaldi). Liver cirrhosis, the only ImportantMedical Event (IME) listed on the label, is largely associated with HCV and notwith the drug. " </a><o:p></o:p></span></span></div>
<div class="MsoNormal">
<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /></span></div>
<span style="font-size: 11pt;"><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><br /><span style="font-size: 11pt;">
So... Now it's time to figure out how the hell I get this drug, because I
suspect this will be my last treatment. </span><i style="font-size: 11pt;">success </i><span style="font-size: 11pt;">or</span><i><span style="font-size: 11pt;"> failure.</span><br /><span style="font-size: 11pt;">Further research should show it's true efficacy, which i feel will reflect poorly on Zepatier if the drug is prioritized because of its </span><span style="font-size: 14.6667px;">price-point</span><span style="font-size: 11pt;"> rather than it's efficacy.</span></i></span></span>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-46866787479816441842016-01-28T10:03:00.000-08:002016-01-28T10:06:23.387-08:00Edges and PillsAs 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.<br />
<br />
<a href="http://www.merck.ca/assets/en/pdf/products/ci/ZEPATIER-CI_E.pdf">In Canada, the drug was recently approved.</a> 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.) <br />
<br />
Normally we would proceed with an off label prescription, however Zepatier is a new drug not a new combo of drugs.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
This is an outline of the major sectors I'll be focusing on as I go through treatment:<br />
<b> Nutrition</b>- Low Sodium, High protein diet with liver friendly foods.<br />
<b> Exercise</b>- 1-2 hours per day 1/2 cardio, tone down existing program: P90X. <br />
<br />
<i><br /> 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.</i><br />
<br />
<br />
<b> Social</b>- Connect deeper with friends by learning more about them.<br />
<b> Emotional</b>- Talk to others about experiences, and complete goals.<br />
<br />
As I implement these changes in my life I will be logging my physical and emotional state during treatment.<br />
<br />
<b><i> 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.</i></b><br />
<br />
With no knowledge of when I start treatment, it's going to make dating with Hep C that much more complicated.<br />
Wait, what? Dating? What about health, treatment and focusing on all of that....<br />
<div>
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.<br />
<b><br /> It's important to keep close the people and things that make us feel alive.<br /> <br /> 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.</b></div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com3tag:blogger.com,1999:blog-5187860248250681278.post-20614225286960418062015-12-28T18:29:00.000-08:002019-04-26T13:04:08.055-07:002016<div class="separator" style="clear: both; text-align: center;">
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<br /></div>
<div style="text-align: center;">
New years is coming. </div>
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Stay Positive.</div>
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Just not HCV positive.</div>
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<br /></div>
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<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/w6YrX2RFygs/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/w6YrX2RFygs?feature=player_embedded" width="320"></iframe></div>
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<br />
<div style="text-align: center;">
This year I will take my <a href="http://canythingbutaverage.blogspot.com/2014/10/b-frank.html">speckled axe</a> and embrace <a href="http://canythingbutaverage.blogspot.com/2014/06/the-blue-sky-is-where-you-imagine-and.html">the</a><span style="font-family: "calibri" , sans-serif; font-size: 11pt;"><a href="http://canythingbutaverage.blogspot.com/2014/06/the-blue-sky-is-where-you-imagine-and.html"> negative space</a>.</span></div>
<span style="font-family: "calibri" , sans-serif;"></span><br />
<div style="text-align: center;">
<span style="font-family: "calibri" , sans-serif;"><span style="font-size: 14.6667px;"><br /></span></span></div>
<span style="font-family: "calibri" , sans-serif;">
<span style="font-size: 11pt;"></span></span>
<div style="text-align: center;">
<span style="font-family: "calibri" , sans-serif;"><span style="font-size: 11pt;"><span style="font-size: 11pt;">I wish you all a glorious new year.</span></span></span></div>
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</span></span><span style="font-family: "calibri" , sans-serif;"><div style="text-align: center;">
<span style="font-size: 14.6667px;"><br /></span></div>
<span style="font-size: 11pt;"><div style="text-align: center;">
<span style="font-size: 11pt;">Hepatitis C you next year.</span><br />
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</span></span>Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-4685685747372585042015-12-18T17:10:00.000-08:002015-12-24T16:52:55.753-08:00But, Why is it purple? I woke up to notice an unusual cough and a foul taste in my mouth. I proceeded to walk myself to the bathroom where upon I discovered a color I didn't think could come from a person. The alarming color I saw was a dark purple with chunks of all different types of foods that I'd eaten all day. I presume that it was possible that it may have been something that I ate, so I proceeded to go through all the different foods that I'd eaten that day in my head. Whatever the potential culprit was, I slowly drank some water and sat upright as I awaited the next round. I was aware that this was not finished. <br />
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The color, the smell, the taste, everything about it seemed unusual. And at 4 AM this is something I needed to keep an eye on. As the morning crept forward I would again find myself face to face with a porcelain halo. I proceeded to dump even more of a purple - now what appeared to be dark red into the bowl. At this point I was certain somewhere inside me... I was bleeding. I have tasted blood that'd been drying in my stomach before I have tasted fresh blood from the back of my throat but this taste this chemical popcorn taste was unlike anything ever that I had willingly consumed. From there I cleaned myself up yet again and sat on my bed waiting for one last thing to make sure. The curious thing about an internal bleed in your GI tract is that there are two areas you can watch: your mouth and your butt so now I was merely waiting for the moment to pass so to speak. Upon inspection I found absolutely nothing unusual, and it was at this point I proceeded to make some phone calls and be on my way to ER. <br />
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While waiting for my dad I sat upon the steps to my home. The cool breeze coming up from the canyon, my arm gently resting on the handrail so that if something may happen perhaps I may lean on it for support. My stomach burning from the inside out and a plastic bag in my hand. Prepared for the worst, a towel over my shoulder waited to clean up any unwanted messes. After a moment I was on my way. There was nothing unusual about the ride except for me vomiting along the way. Thankfully, I had my plastic bag! When we arrived to the ER I handed it off to my father, he proceeded to attempt to give it to the ER nurse which was entertaining to say the least. The next part is a touch hazy as within perhaps an hour of my stay in the ER I was under mild sedation. A 20 gauge needle in my hand was a sobering reminder of the potential impending problems. <i>(A needle gauge between 18-22, is used in case of blood transfusion)</i><br />
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<i> Thankfully my nursing staff was quick and very accommodating throughout the entire process. It was smooth and easy, it's one of the things I prefer about Sharp Healthcare. My nurses were fantastic and made the entire experience significantly more bearable.</i><br />
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While in the ER I proceeded to vomit a few more times before they rolled me upstairs to the ICU. Most nurses are kind of confused when they first see me on the ICU floor because typically speaking to someone on the ICU well ummm...is practically dead. There are number of reasons why the ICU is typically where I end up going, one of them has to do with conscious sedation and the other with the fact that my status may change within a moment. When the new doctor came in prior to the procedure to introduce himself we went over the basics of the procedure's complications, and a little bit of my own patient history. He was very surprised at both the number of treatments I've failed, my outstanding health otherwise and my age. Saying " I'm not going to lie, you are very unlucky."<br />
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The procedure kept getting pushed back, so hours went by where I refused pain meds because of the impending fentanyl required to scope me. So when he came in and said "Long time no see." Well, I couldn't help but respond a lil sassy as i said "Yup." I'm not certain exactly what happened after that because at this point everything kind of gets really fuzzy. Fentanyl will do that to you. The procedure I had was unlike <a href="http://canythingbutaverage.blogspot.com/2015/06/theyre-gonna-shove-what-down-by-throat.html">my typical endoscopy</a>. This was something a little bit deeper it's called a gastroendoduandoscopy. <br />
<i> If you thinking to yourself what the fuck is that? Then perfect we're on the same page. Let's break it down...</i><br />
<i> Gastro: Stomach<br /> Endo: Esophagus<br /> Duadno: Duodenum (it's an area after the stomach, prior to the intestines)<br /> -oscopy: inspection by scope.</i><br />
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After the procedure in my state of delirium I was greeted by my friends. I apparently was quick to adorn myself with the title "Two Socks" and co-opted them into my newly formed band.<br />
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My surgical team, doctors and nurses were on point. My GI doc did a fantastic procedure and didn't bruise my lips.<i> (If you go in for an endoscopy, wear Chapstick, you're basically gonna make out with Legos for ten minutes.)</i><br />
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The scope revealed no real threatening abnormalities.<br />
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The bleed had been caused by irritation and some scraping in my stomach. <br />
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I have little recollection what happened after the procedure, I remember flashes of a car ride, constant requests by me for<a href="http://tajimasandiego.com/"> Tajima Ramen</a>, and suddenly being home. <br />
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While there was no major issue (unless you count the lack of Tajima Ramen), the entire debacle was exhausting to say the least. <br />
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I'll have a follow up in a few weeks, from there we'll determine when treatment should occur.<br />
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<b>I'm going to use this whole shitty experience to highlight one incredibly valuable lesson I've learned to value greatly. </b><br />
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<i>Besides my HCV, I am healthy and fit. It's paramount that when you live with any disease you must mitigate comorbidity (multiple diseases/medical issues) by minimizing your risks. Physical and mental fitness are your friends :)</i><br />
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This wasn't a cake-walk getting to this point, it's hard and it's a little maddening and it took months. Every day, every moment is its own unique struggle. I look at one hurdle, isolate it, and take it down at my leisure. My first three weeks were a constant struggle as I combated the daily one to two hour muscle spasms. But once I built up the muscle and began to better fight my atrophy, it slowly became easier. I would vomit once a week from simpler work outs... my point is that it's not easy, but do it anyway, find what works for you and....<br />
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Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com2tag:blogger.com,1999:blog-5187860248250681278.post-87249361998029398542015-12-06T02:40:00.000-08:002015-12-06T02:40:31.020-08:00And So It Is.<div class="separator" style="clear: both;">
This will probably be my most personal blog to date. <br /><br />I have been lost in exploration lately.<br /><b><br />Rather, I should say I wander, not simply that I am lost. </b><br /><br />This blog has been an unforeseen gift to me, allowing me to look back at my thoughts years ago, and understand where I've come from. To better understand my mistakes, and to live better than I have. I have learned to strengthen the bonds near me, and now I should seek the same connection with others. I value every bond I share, and if I am to truly know myself I must share more personal moments with friends. <br /><br />If I have not extended a hand to you yet, I implore you to seek me out. Because I appreciate you as a friend and I want to experience something you truly love with you. A place or thing that represents who you are, your happy place, if you will.<br /><br />In the same spirit, I have a few weeks remaining on my Disneyland pass, (basically the 15th of December), and I want to share my happy place with you. So that I may know and experience my favorite place with you. I realize I may never go again after this. There are a lot of factors involved with this reality, the price increase is part of it, but there is another hurdle.<br /><br /><i>For the last 4 years, I have had a steadily rising cumulative probably of death. To say I'm beating the odds isn't entirely true, I'm simply very fortunate. As I presently stand, without any treatment my probability of death reaches about 94% by this time next year.</i> </div>
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Including the odds of a successful treatment my outlook improves dramatically. Even if the treatment fails it could extend my gambling habit for another two years, as previous treatments have extended my stay. There's a lot I cannot account for but with the odds I can see, there is about a 9% chance that I become terminally ill this next year and will not make it past 2017. It is something I have taken months to really accept, but I have to learn to let go, and accept what I cannot change. I would rather focus on the hope of success, but I cannot ignore the parts I dislike, I must understand them, and accept them.<br /><br /><b>This isn't some weird dying request or whatever, <a href="http://canythingbutaverage.blogspot.com/2015/10/hope-is-four-letter-word.html">the odds of me living and getting cured are pretty great as far as I'm concerned.</a></b> I simply have reached a point in my life, where I cannot abide weak bonds. If I am to grow, I must humble myself to learn from and better understand every soul around me. <br /><br /><i>On another incredibly personal subject, I am a Deistic Religious Scientist. And the last few months have affected me deeply on a spiritual level. I don't talk about my faith, mostly because there isn't a lot to talk about. Religion has always fascinated me, the tenants, mysteries and what amounts to articles of faith. My faith compels me to understand all forms of belief, and to understand my friends through their faith. It's an aspect of my faith I regrettably stopped paying attention to after my first treatment.</i> <br /><br />I will also take a small bit of time to explain my faith, so that you may know me better. Most people do not know of either aspect of my faith, since they are incredibly obscure and I so rarely talk about them.</div>
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<br />In essence it is a "belief" in a unity of all things through God. That God is within everything and everything is God's will. Good is infinite and an inherent quality that can be understood and accomplished with prayer, meditation, and/or acceptance. There is a universal harmony, a balance, that every moment is complete and perfect within itself and the law of cause and effect is always in motion. That immortality is achieved through our very existence, because life moves in perpetuity. I believe in the mystic concept of a Cosmic Christ, not a person, rather a universal presence, an image of God present in all creation. That it is a God-like consciousness that was and is present in all Prophets and enlightened people who use this in a positive evolution of society, mankind and/or personally.<br /><br />As a Deist, I find the form of religious science to be my truth. I am compelled to understand the bonds of faith that exist within my friends, so that I may better understand them and my own faith.<br /><br />As a Deist, I find validity and wonder within all forms of faith. Because the core understanding within Deism is simply a belief in God, the personal relationship of a religion is up to the Deist as an individual.<br /><br />It is ever present in my life, I don't usually talk about it because I'm actually always talking about it. It is my way of life. I do not invoke the name of God when it's implied so frequently. As a gesture of gratitude to my faith, the symbol of my will bears resemblance to the symbol of Religious Science<span style="text-align: start;">. </span></div>
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<tr><td class="tr-caption" style="text-align: center;">Left: Symbol of unity from Religious Science.<br />Right: V of Acceptance and Struggle: HCVME</td></tr>
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<b>HCVME is the manifestation of my will to become more than I am, to better connect with others and to be open about my challenges so that I may better understand theirs. So that through the power of empathy and perspective we can overcome the social hurdles that face Invisible Disabilities. </b></div>
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<br /><i>The name HC<ME (HCVME) is also intended to evoke the iconic HE>i, which is a shorthand for John 3:30 "He must become greater and greater. I must become less and less." But instead flipping the idea on its head implying 1 John 5:4 "Because everyone who is born from God conquers the universe; and this is the victory that conquers the universe - our faith."</i><br /><br />If you are a new friend, or someone I've yet to meet Email me: Canythingbutaverage@gmail.com<br /><br />And of course, if you need to talk to someone about Hepatitis C(HCV) and you're not sure where to turn I'll do everything I can to help.</div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com0tag:blogger.com,1999:blog-5187860248250681278.post-86041384798906943432015-11-04T11:57:00.001-08:002015-11-04T11:57:42.319-08:00The Transplants<b>I received the call at 8:39 PM</b><br /><br />I was expecting a call from my parents when the phone rang. When I saw it was from a restricted number, I started off apologizing saying "Yea, I meant to call you back sooner, sorry about that." A little confused, the man asked my name.<br /><br /> I was playing Sid Meier's Civilization 5 with a friend at the time, a very mellow video game. The man began after he confirmed who I was, "Hello Rick Nash, I'm calling to tell you that you have a liver offer." My eyes became transfixed on the wall as he explained to me the details. I was jarred from my seat standing, as if that would help with understanding. He explained all of my options very clearly, I could take the liver, or not and it would not affect my standing for a transplant. There was one hiccup:<div>
<i> <b>It was a high risk liver with HCV.</b></i><br /><br />I told him that I'd call him back with an answer. I had to act fast, an hour was all the time that could be spared. I spoke with my parents and friends to work it out.<br /> <br /> In my present state, <a href="http://canythingbutaverage.blogspot.com/2015/04/ill-stop-world-and-meld-with-you.html">my MELD score</a> is in the high teens, which means I'm not in an immediate danger. However given my proclivity for the ER, I seem to find myself in life threatening situations every so often. And if I were to be hospitalized it would likely result in my needing a liver.<br /><br /><span style="font-size: large;"> With that in mind, taking the liver offer becomes a pre-emptive strike approach. </span>If I take the liver it would take a year for my body to get used to it. By that time I will decompensate and be worse off than I am now. And I may also be unable to take <a href="http://blogs.hepmag.com/ricknash/2015/10/moving_past_failures.html">the new treatment(s) in 2016 </a>while I'd recover. This pre-emptive strike is more about risk mitigation than anything else.<br /><br />Besides the affect of my end stage liver disease, I'm otherwise healthy. I'm young and there is little information on recovery following a treatment for young patients (let alone with MELD scores). I could potentially live for a few more years as I am, before needing a transplant. And there are two upcoming treatments which deal with my scenario and trials I could participate in.<br /> <br /><b> When laid out in front of me, the decision was clear. I'm in it for the long haul.</b><br /><br />After weighing the options, I called him back and told him I will pass on the liver offer.<br /> <br /> When I signed up for the liver transplant program two years ago, I hadn't yet realized just how suddenly these kinds of things are.<i> </i><div>
<i><span style="font-size: large;">A liver offer has a very limited amount of time to stay viable</span>,</i></div>
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and I have to be ready at a moment's notice to be at that center when the time comes. Which also means I need to have my phone near me at all times.<div>
In the end it I feel it was a potentially worse short run decision with better long run results. </div>
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Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1tag:blogger.com,1999:blog-5187860248250681278.post-16578935248528655912015-10-16T04:12:00.001-07:002015-10-16T04:12:59.584-07:00Shattered for Good.Recent events in my life have done something amazing and in common theme with my life are presently bittersweet.<br /><br />The realization was due to some heavy introspection...<br /><br />I was deeply depressed after Sovaldi/Olysio failed, but I didn't realize how long that depression would last.<br /><br />After <a href="http://canythingbutaverage.blogspot.com/2014/09/ill-have-turkey-quinoa-wrap.html">I left the hospital in September 2014,</a> I was a shell of myself, trying desperately to figure out my life. And while I found motivation to keep moving forward, persistence though pain is not the same as living. Daily tasks become hard-fought and over the months I found myself unable to do more than a task at a time. I was scattered and constantly procrastinating.<br /><br />The remedies to revive me, didn't work as they had in the past, and until the Harvoni treatment was guaranteed I was degrading into a recluse.<br /><br />But the reason I couldn't pick up my bootstraps is something even further back. <a href="http://canythingbutaverage.blogspot.com/2015/09/the-gray-area-of-ada-protections.html">When I left the school district</a>, I lost that part of my identity. I put my focus into treatment entirely, and slowly dropped most of the things I loved to do. I had decided that my only goal was to be cured. <br /> <br /><b> I had put all of my emotional energy into being cured, leaving little for myself and others.</b> <br /><b> Which was a terrible decision. </b><br /><br /><br /> While I would grow closer to my friends through the roller-coaster of life, I put everything including myself away. As my treatment began, I found support from from friends and especially my girlfriend at the time. She is inspirational to me, and I became the advocate I am today in large part because of her<i>. After the first zero I was elated, this was the first time I had this success. My goal was accomplished! </i>So I started to get involved even more with advocacy, my team raising thousands of dollars over the years now. I wanted to transition from working with kids, to working with technology and kids, and began to look at the idea of graduate schools. I became even closer with friends and family.<br /><br />But in September of 2014, it hit the wall. I had foolishly used my illness as an excuse to myself not to push myself further. I'd never truly resolved the questions in my mind, the despair that came with the wind getting knocked out of me from the failure of Sovaldi. My mind, and the spaces I would inhabit would become cluttered, slowly.<br /> <br /><i> So I would go through <a href="http://canythingbutaverage.blogspot.com/2014/11/six-months-and-quarter-million-dollars.html">my Harvoni treatment</a>, sure that it would work, when I saw the zero I was hesitant to be but still excited. The <a href="http://canythingbutaverage.blogspot.com/2015/05/bad-news-for-people-who-like-good-news.html">failure brought me back to square one.</a></i><br /> <br /> I found simple tasks daunting. I would rarely move throughout the day. My room, everywhere I lived was symbolic of my state of mind. Tasks were harder, not only because of my mental barriers, but because things were literally hard to find. The idea of walking to I became lethargic and gained a lot of weight. I felt like every day would be my last, which isn't as magical as it sounds, because the implication to myself was that i would rather die than be responsible for my actions. The medications I would constantly balance wouldn't help my state of mind, paranoid and confused I had degraded to my lowest point.<br /><br />After a long phone call, my heart sunk. I realized how pathetic I'd been, how fearful, how absurd the methods of my madness had become. I couldn't live like this anymore. Shattered, I finally understood how I'd been sabotaging myself.<br /><br />All the things I'd wanted to do over the past year, suddenly seemed possible. The idea of leaving the house wasn't frightening and tiring. I reorganized my priorities, and began to de-clutter. <br /><br /><i>I use memory anchors to compensate for my slowly degrading memory and brain fog. It's an embodied object for your mind. Every memory is attached using different senses... it's like when you smell something familiar and it reminds you of something. Certain types of cigarette smoke remind me of when my grandmother would smoke on the patio and convince five year old me to get in some kind of trouble to drive my dad crazy.</i><div>
<br />As I de-cluttered, memories came flooding back. I had covered my anchored objects in a room filled with trivial trash and dirty clothes. My windows were dark to keep out the light, because while on treatment my photo-sensitivity went up, but I would continue to use it as an excuse to keep the room dark. The bamboo, Devil's Ivy and Peace Lilies, slowly began to die. I opened up my room to light, and as I type here now, instead of a dark brown curtain, I see palm trees, and a cloudy sky. I have regained a level of focus and excitement I haven't known for years.<br /><br />Having my eyes just recently opened, I see so much more, and will see more to come.<br /> The worry, the fear I had is gone.<br /><i> I can actually say, that I'm no longer depressed.</i><br /> I have a treatment coming up in January, but it's no longer the focal point of my life.<br /> So now, as the great Ben Franklin did, I wake up and I ask myself <br />"What good shall I do today?"</div>
Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com6tag:blogger.com,1999:blog-5187860248250681278.post-21283218308178568662015-10-05T10:02:00.000-07:002015-10-05T10:02:41.217-07:00Hope is not a four letter wordMerck.<br />
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We've been seeing DAAs like Sovaldi come out lots of labs, but we're about to witness the rest of the big companies throw their hat into the ring. Gilead's use of the Warehouse of Hep C (HCV) patients has led to historic profits for Gilead. Johnson and Johnson's Olysio tapped into the market, and Bristol Myers Squibb's new Daklinza (daclatasvir) are filling the gaps Gilead's Sovaldi left.<br />
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And soon Merck is about to throw down one of the most virally specific DAAs around. The new combination treatment will be able to cure even cases previously failed due to RAVs (mutations).<br />
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<i>Why am i stoked?<br />Because it may be my sixth treatment.<br /> So what makes it different?</i><br />
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Well first off two/three phases have been done with higher efficacy than Harvoni.<br />
<a href="http://www.natap.org/2015/EASL/EASL_04.htm"> C-Edge</a> and <a href="http://hepcblog.amjmed.com/hep-c-treatment/c-salvage-final-24-week-follow-up-results/">C-Salvage.</a><br />
C-Edge is similar to most DAA studies, it's efficacy is unsurprisingly high.<br />
C-Salvage as the name implies is specific not only to people who failed interfereon/ribavirin, but also failed a DAA like Sovaldi/Harvoni/V-Pak. It's going after people with NS3 and NS5A variants like myself. <br />
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<b>The C-Salvage study has the best results i have seen for someone in my situation.</b><br />
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Previous treatments I've been on had an 84-86% success rate when it came down to my genotype, and cirrhosis. Usually being even lower for decompensated liver patients, however it still positively impacts MELD, so it's not all a waste.<br />
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<span style="font-size: large;"> The C-Salvage boasts an unbelievably high success rate: 96.2%</span><br />
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<b> The new drugs names: grazoprevir and elbasvir.</b><br />
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<i> So damn catchy, aren't they?</i><br />
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Annnd <span style="font-size: large;">it's slotted to be FDA approved during the early first quarter of 2016.</span> <br />
Annnd <span style="font-size: large;">the new grazoprevir and elbasvir treatments could be as low as 16 weeks instead of 24.</span><br />
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Troubles: The study doesn't specifically mention which variations, as those may/may not have an impact on success. So in this aspect it's kinda a crapshoot, because until later this year we won't have clear enough data to say that it will or will not be successful for my specific variations.<br />
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Troubles: Price, with the way Hep C meds are presently being marketed it would not be surprising to see a hundred thousand dollar price tag. Merck will also probably offer a massive discount program similar to Gilead's MySupportPath.<br />
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<b> And this thing... keep an eye on the TPP...</b><br />
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<b><br /></b> The Trans Pacific Partnership. As i<a href="http://hcvme.org/"> highlighted in a series of blog posts regarding why Medicaid is waiting until people are dying to cure them</a>, the TPP will play a large role in how insurance agencies, Managed Care Organizations, Pharmaceutical costs(and carve outs) are going to be set over the next few years. </div>
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With the TPP disclosure coming out soon, and congress to debate it, this will undoubtedly play a role in access to Merck's new meds, and the prices it offers consumers and insurance agencies.<br />
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C-Edge Study:<br />
http://www.natap.org/2015/EASL/EASL_04.htm</div>
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C-Salvage Study:</div>
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http://hepcblog.amjmed.com/hep-c-treatment/c-salvage-final-24-week-follow-up-results/</div>
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Rick Nashhttp://www.blogger.com/profile/00142462982475596993noreply@blogger.com1