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. 

Missed calls

A decent lot has happened since i last posted. Yesterday i had my follow-up endoscopy. My lil sister was kind enough to drive me there, in my usual form i refused to take off my shoes, and resisted everything in my drugged up haze. The next day has a few fuzy details after i saw them start the injection, and then it was Saturday.

I did learn a few big things prior to my surgery. I learned that my treatment would begin later, because they're trying to get me on drugs that will have potentially less side effects (but sadly no data to back that up at the moment due to the state of my liver) and will take half the time.  An article came out a while ago, and i had a comment exchange with a  friend on my FB wall, i've attached it below as i'm sure many of you have similar questions if you've seen the article.

"
So recently I've noticed that a few people have read a BBC article. Yes a version of this will be used in part of the therapy i will soon be on. The numbers reflect people with functioning livers, i am not among those. So this is incredibly promising, however not the golden ticket it would appear to be.

Hepatitis C trial a 'turning point' http://www.bbc.com/news/health-26987653

A new treatment for hepatitis C cured 90% of patients with the infection in 12 weeks, say scientists after studies in Europe and the US.Top of Form

Friend: Thanks for the post. Will you please explain where the study shows that the numbers reflect only people with functioning livers? They stated that all participants were experiencing liver cirrhosis. I think there might be a gap in my knowledge between cirrhosis and functionality of the liver. Additionally, they state in the preface of the article that Hepatitis C can be spread via "blood , or bodily fluids of an infected person," which is erroneous, right? I thought that it's only spread through blood to blood contact.

*Edit-Here's the original article. It's pretty heavy, but explains the details: http://www.nejm.org/doi/full/10.1056/NEJMoa1402869...

Me:  Bodily fluids is technically correct, because blood is one. There can also be blood in other fluids. Blood to blood is correct.

Cirrhosis has levels. I have advanced liver cirrhosis, for reference.....http://www.meddean.luc.edu/lumen/MEdEd/orfpath/cirhosis.htm

I have a decompensated liver.

Me:  I know they do, I asked my doctor who was familiar with this information, and confirmed with other GIs.

Friend:  Thanks for the information/clarifications. The article that you linked on liver cirrhosis states that it is considered to be a "self-perpetuating irreversible process." Is that for all stages?

Me:  Once the tissue becomes necrotic, or starts to exhibit signs of liver failure..., the only method is removal/replacement.

early states though...As long as the nodules aren't fuckall crazy (aka they don't regenerate and possibly spawn cancerous lil shits) it can be dealt with and managed depending upon the remaining healthy cells.

Early phases: yes it can be dealt with. Late phases the only solution is removal.

"

Another dismaying fact is that i have rather active regenerative nodules. but! all is not lost! the world is still fantastic and beautiful, because, yes my doctor and advocates have a hard case to sell; but they have a case to sell. Me. And the more faces i see beside me, the more i realize how much of a product their selling. My support network always comes through, dozens of friends, realistically dozens of family members is what i should say. i am constantly surprised by the outpouring support and love pushing for my success.  thank you all ever so much. <3

Sleeping in recovery with my shoes on.

Only a few months left, sign up for 10 bucks! JOIN THE LIVER LIFE RACE. or donate, that's cool too!

Ticks and Tocks

A lot of crazy medical stuff has been going on but first i feel happy, and i must share why.

In our lives we find struggles, we find hurdles. Sometimes our legs don't jump just high enough. It's not the best, but there is providence in struggle. In our lives we encounter enemies that will crush a soul, an arm, an idea, a smile.  It takes more energy to recover what was crushed, but it's sweeter. To those who struggle, enjoy the story, the ride, the journey, the crescendo. We live between seconds, and we will always have just enough time. Life; love, sadness, pain, joy, anger happen to sweeten each next piece until a perfect end.

I have recently come to terms with the fact that I'm not as physically able as i once was. I get tired after a few hours of day to day things. I've finally found a balance of supplements that's working well, my new doc gave me some info that helped a lot. The downside to getting rid of acitites is the process. it's tripled my trips to the bathroom, and drains me of lots of nutrients. My muscles can't operate properly and they seize, the problem is that it now happens anywhere.  My metabolism was already on constant eating or pass out mode, this just made it worse. i am tired and worn out so much easier. My solution is 750mg Mg 500mg K 40+g Protein, >200mg Na, 300-500 calories per hour, 8 oz water per hour, and two low stress 20 min exercise routines. high iron, minimal red meat, and a ludicrous number of Bananas. with that, i have days that work, i can function. 

i have done blood tests, ECG, a urine sample where i peed in jug for a whole day... still don't get that...MRIs, Endoscopies and I'm up for EKG and a few other tests it seems before i can start. Being cured is that goal i strive for, this process has been sped up tremendously with help from my family, my fantastic doc and staff as well as some of the best Health Advocates I've encountered. But the whole wait of it, i will savor. i find joy within ticks and tocks, because it reminds me to experience what lies between them.

28

A few days ago was my birthday, with my leg problems coming and going, the endoscopy looked to be an odd way to celebrate. the night of my birthday had an early alarm wake up from my cell phone. Years ago when i started the third treatment i set a calendar event in hopes of success. it read one word: "Freedom."

 It wasn't the way i wanted to begin my birthday. that hope crushing reminder of my consistent failures.

The endoscopy was not promising as some bleeding varices were banded. exhausted, and drugs running through my system from the endoscopy the next few days were a blur of familiar faces dropping by to take care of me. It reminded me what good friends i have.

I normally celebrate my birthday for about ten days, but this year i scaled it back to one party. the original reason why was because people didn't show up. this year i expected about 20 people, i was surprised and excited to see over forty of my friends in attendance. as i looked around i felt so lucky to have so many amazing friends all there for me.  It was the best present i'd received in a while.

in other news, i am moving forward with steps to start treatment. my hope is for march which really means May, as it can take up to two months to be OKed for RX.

Also please join me and my amazing friends (or if you areone of my amazing friends and haven't registered, for free btw) on the SanDiego Liver Life Walk.

it's free until the end of the month.

and if you can't make it, that's okay, you can always donate. :)

Drop in cabin pressure

 The last few weeks have been a doozy! My legs have added a new source of frustration, the solution to deal with ascites was to get rid of all that excess water.

I could not have foreseen what happened next, within a week I lost near 15 lbs, turns out flushing all the water out of my system has left me rather bone skinny. After a week of the rx, I was introduced to what has become a new daily battle.

My legs seized, while most of the muscles cramped, the rest Charlie horsed or fell asleep depending upon the angle. For a good near hour I was restricted to the floor, I am lucky in that my friends were all there to take care of me. Ice did very little, heat helped more, so heat and steam became my remedy until they depeleted their usefulness. After talking with a friend of mine she explained a few things about the rx I was on. Turns out, in flushing your system, potassium, sodium and magnesium get depleted easily. To make the balance harder I am on a low sodium diet, making supplements, and fruity snack choices my primary tools alongside water in preventing the debilitating  leg pain.

The pain, I can get used to, I can deal with it. but the frustration is with my newfound lack of independence. It’s a hard concept to take in, to know that where I stand presently, i essentially can’t risk driving too far by myself, and at times I can’t drive, can’t move. i’m getting a pretty good handle on it, which is nice because I’m certain I will be able to stop taking them soon.

Also a new staple to my diet is massive amounts of protein I am to be having a minimum of 40-60gs per day. Luckily I always make sure to do curls and wear sunglasses while I drink my protein drinks.

The Liver life walk team is growing!!! I’m so excited, we’ll be ordering shirts third week of march so sign up before then.

It’s free until the end of the month 2/28

 I also have an upper endo soon, the day after my birthday next week, woohoo. lets hope to keep the varicies under wraps.