Friday, September 8, 2017
In 2011 I noticed a familiar feeling in my throat and a lightheadedness that comes from anemia.
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.
Suddenly I wasn't in line anymore.
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.
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.
To others with HCV, to my fellow dragonslayers,
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.
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.
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.
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.
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.
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.
Monday, April 24, 2017
The images below are of my former liver, the damage of thirty years of Viral Hepatitis C (HCV).
The images are graphic, so please be warned now, they are unlike anything I have ever posted before.
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.
In honor of National Donate Life month, This is why i needed a transplant liver.
This was my liver's limit.
This is what a healthy liver should ideally look like:
Friday, March 31, 2017
Tuesday, March 14, 2017
Not the ghost dog from Tim Burton's The Nightmare Before Christmas.
Although that is one of my favorite Disney movies.
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.
He needed Zero to nudge him in the right direction.
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.
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.
To understand why this antihero means so much to me, isn't so hard.
Monday, March 13th, 2017 I found out I have an undetectable viral load, in other words, a Zero.
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.)
My Transplant gave me time to reflect, (Yea, I had one of those, I'll tell you about it sometime... It's a long story) it gave me a renewed energy to take on what I want from life.
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.
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.
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.
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.
But this is where the rebirth thing changes.
Because I need your help.
I wrote a lil bit about how the ACA saved my life, but it's more than that.
The proposed replacement will create brackets of insolvency. If you are sick, you will eventually find yourself facing exponential cost increases as time goes by.
Unless you happen to make over 250k per year.
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.
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.
If the AHCA(the ACA replacement) passes I will see my healthcare costs rise to 50-60% of my annual income.
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.
It drops Medicaid eligibility to 100% of the poverty rate, its static tax credit doesn't lower premium costs for anyone who actively uses insurance. The 30% continuation fee creates no incentive to buy insurance because its threshold is too variable to have any form of consistent applicability.
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. The cost is comparatively $708(under the ACA) vs. $1240(under the AHCA) annually.
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.
(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.)
Why average? Because healthy is rarer than having an illness or ailment.
The bill falls short of what it is"replacing" at its most effective point for the average young American.
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.
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.
The bill also suggests that this amount is 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. 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.
But here's where it gets really weird.
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?
Because the bill fails to correctly qualify this there will be countless legal disputes attempting to resolve it.
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.
This means that it actually disincentivizes health insurance for those who are currently uninsured.
We can do better. Remind our representatives that we must do better.
Contact your Representative
Contact your Senator
Friday, March 10, 2017
My mind and heart are racing, but they'll be no winner.
Waiting for a phone call that will determine your life is nerve-racking.
I've been here before.
Too many times.
Every treatment is terribly exciting, because it could cure me. But based on my experience, it won't.
There is little I can do to help the process, little I can do to find out what's going on.
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.
But there are moments that bend me out of joint. I've waited for phone calls for years:
"It can't be helped."
"They'll be another one."
"There always is."
The struggle is remembering that it's not me. It's something that happened to me.
In many ways my formative years developed around the notion that because of it, people treat me differently.
But I wish that were my only problem, because that I can deal with, I can affect.
But this.... I can't.
Information is my tool for success.
But it's a double-edged sword.
The more I know, the more I understand my limitations.
Every treatment means four chances.
But I've never been past my first chance.
To seize that feeling when I know my existence isn't burdensome. Was a flicker for brief moments in my life.
To say that depression follows right behind me doesn't give the stigma, the ailments, the fear a standing chance.
I grew up with this idea that I walk beside death. And he's been my least favorite friend this entire time.
But he's followed by something too.
What is harder to see is that hope, clarity, friendship and joy follow him.
Which means they're right here with me just as close as the others. But if I don't adjust my perspective, the angle makes them appear farther away, like a sideview mirror.
But they're here, I just have to remind myself.
They're always here.
Friday, February 10, 2017
This birthday is special to me.
Because it is one I didn't expect to necessarily have.
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.
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.
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.
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.
So this isn't an interview, it's just a format to help isolate certain issues, but what are we talking about?
Presently we are in dire straits politically, and many don't understand just what the stakes are.
I'm talking about the ACA aka Obamacare.
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.
So we're essentially talking about how the ACA/Obamacare saved my life.
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'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.
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.
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.
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.
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 esophageal bleeding episode would send me into the hospital, I was pink slipped. To make this more confusing, it would be recalled, and sent again twice.
After receiving my MELD Score of 14, I began to look for a new job. Thankfully my friends knew of an opening and I started later that year.
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.
Thankfully the ACA stepped in twofold: it extended my coverage until 26, and my preexisting condition was no longer a coverage concern.
That being said, the ACA was new and still very shaky, and insurance companies can retroactively deny coverage.
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.
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.
What would have happened without the ACA?
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. My HCV treatment without insurance was over $100,000 and the medical care otherwise meant I hit max out of pocket on a yearly basis.
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.
Thankfully, the ACA does exist, so that didn't happen.
Those two parts of the ACA/Obamacare legislation were vital in your life, how else has it affected you?
After the third treatment failed at the end of 2012, my symptoms began to worsen.
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.
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.
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.
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, I was terminated at the end of 2013. 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.
Wait, you were legally disabled, why didn't you have disability Medicare?
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.
Without a job I was frantically familiarizing myself with Covered California.
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?
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.
Sounds like you're into conspiracy theories.
Technically, that's what this is, they're conspiring to control prices. We have no way to correct this market inequality besides government action.
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.
It allowed me to postpone my death by a year as I zeroed out on my fourth treatment. 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 run in with C.Diff at a diner. The treatment had failed and the virus was back in the millions.
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.
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.
To date my cumulative bill to insurance total is approaching six million dollars.
TIL: I'm not a cheap date.
It was worth it though, you were cured, right?
No, the fifth treatment failed, 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.
My treatment was postponed as I was no longer allowed treatment due to my high MELD score, and so I waited by my phone. I had been on the transplant list nearly three years by this point and only received two calls before September of last year.
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.
It sounds like the ACA was the bridge before Medicare for you, was that always the plan?
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.
So you're alive today because of the ACA and Medicare, how do you feel about the repeal and replace?
I'm interested to watch as the GOP replaces The ACA/Obamacare with The ACA/Obamacare or Ryancare.
Don't you mean Trumpcare?
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. He has been at the head of this opposition since the ACA came into being.
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.
The new Right to Try legislation will most likely fuse into an Obamacare replacement.
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.
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.