It’s been…. one week

Woohoo! Only 23 more to go!  I have yet to perfectly balance all these meds and diet, but I’ll get there. IT’s harder predicting my energy levels, I’ll have random sudden bursts of energy that put me to a normal level, and then moments later come back to being exhausted. While generally I can tell when I’m most affected, it now appears more moot than I originally presupposed. One major truth remain, my muscles get tired a lot easier.

On the bright side, I have a blood draw and GI appointment this Friday, so we could see how quickly this drug is working. I intended to attempt a road trip up to San Francisco to see some good friends I haven’t seen a while, and visit my girlfriend but I quickly realized two factors that would make this impossible upon starting treatment. The first was that realistically I don’t have the option/freedom of traveling alone nor could I last more than 2 hours in a car without needing to nap for a break and restroom.

There is a mental fog I didn’t really notice until recently, it makes things more confusing. I have a hard time dealing with obstacles properly. I have a shorter fuse, partly because I’m overwhelmed by my senses, and partly because of that fog. It’s frustrating because there’s little I can do.

But in time I’m certain I’ll find a way around it, I’ve got good friends who understand and make this easier.

Quarter million dollar RX combo

I recently wrote a summarized version of “My Hep Story” that I submitted to HepMag.com. This is a very consumable summary of my family’s battle with this illness:

The italicized was omitted from the submission

--

It was summer time, and I was going into seventh grade. After a day of playing tennis and drinking sugary drinks I went home to make a discovery I had not thought possible. Sprinting to the bathroom, I had little for warning of what was in store. As the “iced tea” colored toilet bowl filled I understood that this wasn't normal, my dad told me we’d need to get that checked out.  Fast forward: some new doctors, some new tests, was it his kidney? No, his spleen? No, his liver? Yes, what did the biopsy say? None of us really knew what to expect when we met with the doctor that day.  Little was known about HCV among generalist doctors at the time, and the information he explained was minimal. The room went quiet as my parents probed him, “…at his rate, it isn’t unlikely that transplant at age 30 will be a reality for him if he doesn't clear the virus. And even then he’ll re-infect the new liver.”

Sports were gone; my physical activity spurned the event, so I was put to a system where I could not over exert myself. But this isn't just about me, because I know how I got the virus. The doctor asked my family for blood tests, and within a week he called us in. My dad? No, my brother? No, my mom? My mother’s hands fell to her face as she was told the news, we were the same genotype. I am a vertical transfer. Within months her optimism would later sew the same brightness within me, but not today. My mother would go on two treatments while I was in school. Each treatment put a glimpse into the insane side effects and pain from non-peg interferon into my reality. This wasn't just my mother’s pain, it was to be mine.

As years passed, I too began treatment. At eighteen, people weren’t prepared to see my face, I stood out like a sore thumb in a GI so filled with geriatrics that they called sixty year olds, whippersnappers. My first treatment took months to get going, and it took about as much time for them to give me my first new HCV label: Non-responder. The treatment wasn't just tough; it dug at my fiancé’, my friends, and my job. It was my own personal hell, each month the results teetered around the three million (viral load) level. The failure of my treatment was hard on me, coupled with the ending of my engagement and the news that I would need another semester at school, I lost myself.

One of the biggest things that helped me refocus was my group, at the site where i worked at the time, they were some of the strongest personalities and rather chaotic group of kids. Helping them, watching them improve over the few months before their promotion was one of the most gratifying things i'd felt in a while, Seeing how, in spite of all their arguing and rather bizarre antics, they worked together. Their compassion for one another inspired me, alongside their struggles and accomplishments to this day have been one of the single biggest factors in what drives my passion for working with children. but at the time, it helped me find myself.

I refocused, began eating healthier, working out more, and within the next year, a new job. After two years, another treatment would reinforce my title as a non-responder. Internal bleeding and new symptoms began to illustrate my decaying liver. Just as I had done before I refocused, my next job was accommodating to my situation for a corporate job, and as I started it I saw my mom go through the roughest treatment yet: the triple cocktail (Peg/Riba/Incivek.) Two transfusions would keep her going as she zero’d out and was cured. I was elated, not only because my mother was clear of the virus, but because it meant that I would have a path myself. I prepared for months ahead of time; With the help of a dear friend, I was in the best shape I’d ever been in. Within a month I shot from over 9,000,000 to just 220. I felt like I was dying, but the results were fantastic. The next nine weeks would keep me at less than forty, and as the veins in my throat burst, not only would I lose a third of my blood within a few hours, but any hope of continuing that treatment.

Last year the symptoms began interfering with my brain; encephalopathy, ascites, jaundice, my esophageal varicies and portal hypertension had new company. As my MELD went up, a new treatment needed to happen soon.

If I am anything, it is persistent, I have recently begun my fourth treatment. During my last treatment I began a blog of it, keeping my friends and family informed, and hoping that it will help those who are going through similar troubles. I hope my story here inspires and helps others.

 --

Day Six

As I approach day 6, I’m beginning to understand and deal with the side effects.

The most irritating so far, is the exhaustion. It appears to have amplified my deteriorating symptoms. The problem is, that I’m restless…I can’t sleep, and it’s harder to focus. To control the GI slip n slide, I can balance my lactulose to ensure that I don’t have a constant stream, or suffer the opposite. Both of which cause a decent deal of pain at this point. My sides ache and have more sharp pains than normal, it’s as if someone just walks by every so often and stabs me in the liver.

My senses are enhanced again, increased photosensitivity, and I couldn’t have imagined this one, my eyesight is improving a little.

My energy levels do come to near a normal level as I approach 8pm (when I take my RX) and rapidly descend until about 10pm.

I’m able to do more and more each day, which gives me hope, as I get used to the medication.

I wake up each morning with a throbbing headache; the photosensitivity makes what little light enters my room feel like spot lights illuminated targets for my irritated gaze. All of my senses are more enhanced, however nothing like past treatments, thank god. I’m just tired, a half hour or so will help me drag myself out of bed, unless I am woken by an unwelcome surprise. When that’s the case I sprint to the bathroom so fast the entire procedure wears me out so much I typically have to go back to sleep afterward. The treatment enhances the symptoms from my deteriorating liver, now preoccupied fighting at full steam. So balancing what I eat is more careful than I may make it seem at times. Hundreds of calories comprise my breakfast, as I will pass most of it; I have to hold on to what nutrients I can. I try and do as much excercise as i can, a few minutes of free-weights, 5lb and 10lb when i'm bold. It isn’t pleasant, it isn’t hell, it’s just constantly inconvenient. 

Resources, i mined too much vespene gas

The treatment i'm on is rather unique in the HCV community, why? because it's still got some kinks.

So why am i doing it? Well, mostly because at my rate of...lets just call it shitty liver, i'm en route for transplant.

Transplant isn't a solution, it's a very very very very very very very unfavorable situation. Transplant doens't cure anything, it just gives me a new liver to reinfect, which given the fact that my body is already resisting it, means that it doesn't have a lot of staying power. 

BUT Transplant is still a necessary alternative, because well... the other one has a lot more verys, and a handful of angry and sad people if it came to that.

So lets talk about a few things you probably don't know.

First, the end result: being cured. Technically being cured isn't really the accurate term, the real term for it happens about six months of zeroing out (aka aviremia) post treatment. it's called SVR aka Sustained Virological Response

While yes i could actually be cured, that's years down the road because there is a lot of damage to repair. SVR is what will make recovery possible.

Damnit Jim! I'm a layman not a doctor. Treatment is a weird thing, different doctors have preferences on which drugs to use. The price of the treatments i had been on, has gone down dramatically for those treatments. Patent laws and sales numbers have driven that. but what about the one i'm presently on: Olysio/Sovaldi. Is it the most expensive HCV treatment? almost, there are more expensive combinations and depending upon your healthcare coverage most people may not get approved from these expensive wonderdrugs. It's been kind of a blind operation, operating on half of the knowledge, but now...

Well, this one just came out with some findings. 

It's about a hundred pages of reading, with about 10 pages near the end you should really look at, but the bottom line is this:

Not only does it work... it fucking rocks. the Liklihoods are the highest they have ever been. around 90%.

i know you've heard the 90% number bounce around regarding Sovaldi, but it's the combo that matters, and that's new.

Okay cool, so now i've got a 90% chance of beating this thing right? NOPE.

Unlike the sample size, i have a decompensated liver, like pretty bad man. 

What that means, is that i can expect a similar likelihood, but it's hard to say what will happen. my growing symptoms are a reflection of the condition of my liver. 

There are a lot of figures getting thrown around regard HCV (and i'm not talkin 'bout Pam n Tommy) the news latches on to those big numbers about people infected with little explanation, similarly locking on the misinformation because its good for headlines. If they're wrong they'll issue a redaction, on page 33b lower left hand corner. SOOOOOOOOOOOOOOOOOOOOO More like the Judd's lets build a bridge.

Curious about those crazy numbers you keep hearing about, how do they determine all of this? what kinds of  infection are there? How many deaths can be attributed to is?

Oh Dear! is that all? No, there's a lot more information out there but i urge you to get tested, and to have others around you tested. early detection means early solutions. HCV doesn't always do what it has done to me, in fact a good chunk of the time, it doesn't do shit for decades. Many Boomers i know who are/were infected, were moderate to heavy drinkers until they found out, some continue to anyhow. Yet, symptoms took decades to manifest.

The best way for you to get tested is to give blood. (they screen for it, and will notify you if you have it.) As a transfusion recipient, not only will the test be free, but you're helping a great cause.

Precautions: take with food

Last night i took the big step forward and began my treatment, in contrast to treatments prior the meds are far friendlier, mt last treatment consisted of taking three ribivrin and three incivek twice a day, a touch inconvenient as the packaging came in pairs of sealed capsules which mean about an hour or preparation when you include everything for the shot once a week and the 20g of fat i had to eat prior to pills, these are once daily, one pill each, and take with food.
Some symptoms began to show about midnight last night, apparently the diuretics i'm on have decided to team up with my new meds, it does make me concerned. In the words of the Auralnauts' Bane "Regular bowel movements are but a bitter memory." if you don't get the reference just search Bane and Strawberries, and select the video labeled outtakes.

Writing this has consumed my waking moments of the day so far, the level of exhaustion is only multiplied by my less than optimal state. it's hard to tell the full scope of symptoms so early on.
But lets dial back to last night.
My parents made preparations as i'm staying there for the next few days. to ensure that if serious side effects manifest that i am en route to the hospital within minutes. my parents prepared a nice filling meal as i read the instructions, side effects and interactions to be sure i didn't miss a beat. After reading them an parsing them out to my weekly pillbox, i handed the instructions over to my girlfriend. She stayed the night with me, making sure i was okay. My little sister stopped by for a bit to check up on me and go over some things we were working on. Taking the meds for treatment was a huge relief on how anxious and worked up i'd been all week just waiting to start.

at my trip to the dentist i found out that i have a massive amount of newly formed cavities in the past two years. looking back at major events that could have caused this, we ultimately came to the conclusion that the prior treatment was the biggest catalyst. its troublesome not only because that's a costly endeavor, but because it makes me curious what other time bombs lay in wait from the incivek nightmare.

Other notes, thank you all for your warm wishes,texts, messages and hopeful prayers, and my uncle and his church for a gorgeous prayer blanket. the only word i can really come to about all of this is blessed. while i have always tried to keep a positive notion and to do good, whenever possible. I am only partly responsible for being surrounded by amazing and loving friends and family, it is also serendipitous and good fortune that helps bind the fabric as i dress for success.

Below are two links, the first is to my liver life walk, because you should totally come and join, but if you cannot, donations are always appreciated. the second link is our team shirts, if you use goodthreads(the company in the link) it donates five dollars to the American Liver Foundation, and our team Why Not Zoidberg? The reason i post our team shirts link is because... even if you're not running/walking, doesn't mean you're not on the team :)

the walk:  http://go.liverfoundation.org/site/TR/LiverLifeWalk2014/LiverLifeWalk?px=1796211&pg=personal&fr_id=4070

a word about the shirts... All you need to do, if you'd like to order through this site is select the shirt type (with the purple design on it), and click next step a few times until ordering. everything should automatically work.
The Design is IV, with the words Solvitur Ambulando beneath. Which means "It can be solved by walking"

the shirts! http://www.goodthreads.com/SharedDesign/Solviturabulando.design

Numbers

http://www.cnbc.com/id/100840148

Sometimes I will break in my usual conversation about HepC, and this is one of those circumstances.

This is about the financial costs of my condition. Is all of this expensive? If it weren't for Health Insurance, FSA management and Health Advocates, I would be over five million dollars in debt.

I am the outlier in Healthcare, I’m not the biggest outlier, but I’m a part of a growing minority.

Here’s a breakdown of a year (why a year, not a month? Calm down, I’ll get there, once you've been to enough doc appointments. You start to understand why you’re called a Patient)

Each year I have 2 Internal Medicine/Gen Practice doc appointments to check on my overall physical and emotional health.

Each Year I have around  15 Specialist GI visits, and usually about 3 referrals to other specialists.

Each year I have a mandatory cancer check via Ultrasound, via MRI, and sometimes via CAT scan.

Each year I have about 30-40 blood Draws, 12 of which are not associated with a procedure.

Each year i have 1-2 Endoscopies, most of the time I am banded, which results in a 3^rd.

These are just standard costs, the Treatments, Biopsies and Bleeds have cost me so much more. I’ve taken the liberty of ironing out my costs over the last 15 years of my healthcare experience. I took about an hour of going over past bills and my Medical History

Healthcare need	Avg. cost PER VISIT	Avg. Out of Pocket	Total Yearly	OoP
18 Specialist	700	35	12600	630
2 Internal/Gen Prac	400	20	800	40
Lab work (CAT, MRI, etc): 6	4,000	60	24000	360
12 Blood Draws(typically insurance covers a draw when it’s involved in a procedure, however not have insurance plan is built the same)	550	25	6600	300
2 Endoscopies	5,400	450	10800	900
Associated RX (10 refills)	480	75	4800	750
Totals			59600	2980

The Treatment Prep cost total of 150,000 with an Out of Pocket of 1,500

The Treatment RX cost total of 740,000 with an Out of Pocket of 3,700

Complications and Biopsies cost total of 460,000 with an Out of Pocket of 3,500

These are not consistent costs, but rather sporadic events, so totals work better. My Total out of Pocket has been 8,700, The Treatments began 10 years ago, while the costs were in three big lumps of about 2,500, but lets add it to the yearly costs of 580 per year.

This is up until a few months ago, total amounts will be updated post treatment.

My total cost per year is 149,600, Total over the years is around $2,244,000

My yearly costs are effectively around $3,560 per year out of pocket.  I always max my health FSAs, which increases my overall effective income by about 1,000. On top of that, up until this year my Out of pocket max was about 2,000. So I was able to differ most costs, however RXs and some visits don’t automatically factor this, so sometimes I've had to do some odd reimbursements.

Presently I have Covered California’s best plan. Which is why I’m keeping the numbers for a moment, I just hit my 4,000 out of pocket max this month as I prepare for treatment later this week.

At the end of the year, I will be able to fully illustrate the benefits of health insurance and why Obamacare has given me years of extra life and saved me hundreds of thousands of dollars in debt I would never pay off, because I would have to declare bankruptcy. Next time you think we don’t need Obamacare, just walk up to me and explain to me why I deserve to die a horrid painful and debt ridden life. Yes, it’s actually that seriously effective.

But wait, wasn't that article touting the failure of a Obamacare? Nope, read past the bias to an objective standpoint, Obamacare is merely a tool; we need better ones. With all kinds of abuse and lobbying, we need better regulations to assist basic living. The Affordable Care Act (Obamacare) was originally written to deal some seriously heavy blows to Pharma, Mega-corporations and Insurance companies. But years of political misrepresentation and lobbying weakened it.

I am a lifelong Republican; from a long family line of Republicans, and I assure you this kind of legislation is only at odds with those who haven’t read it. And with that, I borrow the words of my Alma Mater: Si Se Puede.

When your life is in the hands of strangers, you have to pay attention.

Exhaust fumes

This last week has proven very unique to all of us. San Diego’s Wildfire week shows us the necessity of good fire prevention. 2014’s wildfires, just as 2007’s firestorm prove to show the series variety and capacity of fire. 2k3 was a slow moving behemoth, which over the course of the week consumed east county to the 15, 2007’s firestorm was fast, ripping through tinder laden areas with high winds it created it’s own weather and created the largest mass evac in southern California history. 2014 was yet again a whole different monster. A series of wildfires threaten/ed homes all along san diego county, The most intense fire being the CoCos fire in the San Marcos/Escondido area. Each time, preparation was better and response/control achieved. The fires impact a lot of things, but this time around, most businesses have been open, functioning in slightly limited capacity. The issue for people with weakened immune system is probably what you assume. I picked up breathing masks and new filters. You may think the air quality is fine because it looks okay, you’d be wrong. Yesterday I made the mistake of removing my mask for an extended period of time outside, which helped produce the exhausted state I’m presently in, I’d forgotten my bandana and respirator, a mistake I won’t forget.

Respiratory issues are a big deal, and while you may find it silly some one’s wearing a mask, there’s probably a good reason.

Yesterday I had my doc’s appt. late again, packing up all of my meds, while smart for emergencies has helped make remembering to take them, more challenging. The doc cleared me to start pending my upcoming dental appointment and return MRI.

Doc also confirmed what I’d come to understand over the course of my years, my caloric intake should dwarf that of my peers. My body is essentially always sick, and it doesn’t hold on to most nutrients, it just expels them. Which means my average consumption of calories should be between 3,500 and 4,500.  While most of the time it’s pretty awesome not worry about the impact of the volume of food idea, the problem comes that I still have to watch sodium ideally under 1000mg, protein (40-60g) at the large amount of food. Turns out there aren’t a lot of things with low sodium, high protein and high calorie. Essentially by minimizing salt at home, I’ve successfully brought it below 2,000. Making sure my diet is tuned going into treatment is ideal, soas to minimize discomfort.

Back to the clearing for start, as of yesterday my official start date begins May 29^th.  A little later than I would have preferred but fantastic news nonetheless, presently I have my new RX, so I could begin earlier but the MRI may produce an unwanted variable that could disrupt treatment. However this is highly unlikely.

Preparation for treatment requires some rather odd replacements. I have temporary replacement: Toothbrushes, nail clippers, razors, and other personal items, I must throw away my current ones (as they could reinfect me) and use new sets of everything each month. Stocking up on supplements, snacks and things I may need is also helpful, as I have no idea what condition I’ll be in.  Further research has shown me that i could develop a serious rash beyond typical headache, tiredness and the like.... and warns against mixing many supplements.

All in all, it looks like I’m well prepared and ready to start. In a little more than a month, we’ll be checking who wants T shirts soon, keep an eye on the event page on FB, or contact me directly via FB or canythingbutaverage@gmail.com

IF YOU HAVEN’T ALREADY, SIGN UP! LIVER LIFE WALK!

http://go.liverfoundation.org/site/TR/LiverLifeWalk2014/LiverLifeWalk?pg=team&fr_id=4070&team_id=49463

Please join, it would be amazing to have a group of near 50 walkers! :D right now we’re at about 30.

This chamber has no windows and no doors.

There are a lot of unexpected things when a major organ doesn't function properly. I went in last week for my Cardio Pulmonary and Arteal blood gas. i found out that my lung capacity is within the normal range which was great, however it seems that for each breath i draw, i only hold in about 56% of it's oxygen, a normal human would be about 80. for every 3 breaths you take, i take 5, it explained why certain tasks get me winded.

My esophagus has finally calmed down, since the endoscopy, but i can't say the same for the rest of my GI tract. it's been an escalating issue and it appears to be dying down now. I had heartburn from nothing, water anything, it wouldn't matter. and following that would extend a sharp pain in my liver and then what i believe to be my spleen.  but the more annoying fact from this meant, a tremendous amount of gas. Bless my girlfriend's heart for putting up with it. I felt sorry for the kids, friends and my co-workers. Especially inside the Haunted Mansion..I gave them a new chilling challenge. 

With more time passing, I'm finding that my GI tract just doesn't like a lot of things. So, what brings me here tonight requires a different kind of introduction. As we enter into the...the Twilight Zone. Last week i received a letter, well three letters. The first was a letter from Personnel  explaining to me my options, a sobering reminder of my new limitations. The other two letters were approval letters OKing the RX for treatment, a fantastic step in the right direction. It was nice news going into a fun filled weekend for two of my amazing friends' birthdays, On Sunday, with the help of a wheelchair and a healthy grip of pilots, i was able to last a full day at Disneyland. 

It's an odd perspective, from a wheelchair.I'm not really certain what i expected, but what i noticed was a handful of people who were so consumed by themselves that anyone who doesn't look like what they expect a disabled person to look like was cause to comment. The looks from people, and the comments were ignorant of the idea that a person could be legitimately in need, and instead favored the idea that we should assume everyone is perfectly capable and simply dishonest. Projection is a funny thing for those too enveloped by their own unhappiness so much that the joy of trust is a light far off in the distance. It would be excellent if the clouds of negativity leave their space and remind them the path to hope is but a stone's throw away.

Disneyland represents a lot to me, it reminds me that no matter who you are, what you can do, there is a place where you are always welcome. It has and always will be a symbol of joy and hope to me, no matter what else is going on in my life, Disneyland has always been a comforting place to escape to. It is a bustle of madness all colliding together forming these intricately crafted experiences and lasting memories. it is a reminder that through the Chaos of life, comes beauty and joy.

Last week i was notified that my viral load was only around 2.5 million. ( to help explain viral load, think of it as, the bigger the number the faster the growth rate of the virus and the more it can infect healthy cells) The number was even more fantastic news, as it was much lower than the near 4 million i assumed i would be near.

Today i received a call from my mother explaining that i would be able to start the treatment as soon as this weekend. which means that in a little more than six months, i will zero out. (technically 6 month  post treatment and 1 year markers really show "cure.") But it's terribly exciting news and it makes me the best kind of nervous. 

For my 29th birthday, i will be Zero'ed out, and hopefully my 30th, i will be cured and recovered as i can get.