Excuse me, miss.

Sometimes priorities seem strange. On Monday, in all my haste I took my medley of pills, but left an important one out.

All of my alarms set to the tune of Taylor Swift songs, and people reminding me didn't help. I'd even had it with me to make sure that if I'd stayed too long at the Christmas party I was attending, I'd have it.

(if you're curious why i set it to Taylor Swift songs, it's pretty simple. The songs i pick catch most people's attention, aren't offensive, are positive and upbeat, and they're really catchy.)

I had all of my pills in front of me, and I was momentarily distracted while taking them. With my memory being hazy, I left thinking I'd double checked. But today when I got home, I saw it sitting where I put the pills I'm about to take.

I missed a pill. I forgot to take my Harvoni.

In all my years, in all my treatments I've never missed one. I've been a touch late in taking a Ribavirin, but I underestimated my greatest enemy in this; myself. As the years progress, and my condition worsens I am glad that the treatments are getting easier, because routine will press upon me to forget. The benefit of habit and routine is doing something the same every day, and making it easier to remember.  And when it's important, those close to you ask  "did you take your pill?" my routine response is yes. Therein lies the trouble, that ease of memory is a double edged sword, as in my case.  Having a  generally foggy memory without lactulose doesn't help. Because when I thought back, I'd unintentionally created a false memory because of my routine answer. I remembered everything up to that pill, and everything afterward, and the circumstances were basically normal.

So what does that mean?

Well, I don't know, and really nor can anyone tell me. as there isn't enough data to show what happens when you do forget.
Turns out they don't want someone to intentionally forget a pill, when a potentially billion dollar study for FDA approval comes around.

As to what becomes of this missed dose, and how it will affect me, how I move forward... I'll keep you informed. In situations like this a little knowledge can mean writhing in pain, or walking upright. Sharing this knowledge is important. (While the info will be here, I will also be posting an exclusive comprehensive of this, related Harvoni info, and any results on HepMag before the solstice.)

As for tonight, I took my pill, and I sure as hell won't be missing another one.

Now, to Shake it off.

Kanye knows

After a week of some of the most voracious ascities I've had yet, my feet finally look like feet. While on Harvoni i'm limited to a half dosage of my diuretics. I assumed this would be the case as they are the most likely drug interaction to cause an issue with...anything. seriously though. anything.

Reduce that swelling and Jaundice!

Diuretics, while fantastic at their job also purge the body of lots of other things, which is why caution applies to my continued taking of them while on Harvoni. But this situation I've been dealing with has been coupled by a newly growing side effect.

Fatigue.

Being tired may not seem so bad, but as my 10 hour night, tack on 3 hours of naps, then 6 hours of naps. I can do even less in a day. I find myself constantly fighting off fatigue, it's odd, because the only way I've managed to fight it off is to keep moving. It's when I stop that I just fall asleep.

I know that bottle says "Side effects may include fatigue." but there really should be levels of fatigue. Because if i get past 20 hours of sleep a day, that's not fatigue that's hibernation. 

So if you see me doing some jumping jacks or random stretches while having a conversation, the fitness I'm into, is fitness energy back into my day.

Dear Fast food

Dear Fast-food,

When I was a kid, I used to love you. Unusual combinations of tasty treats, perfectly done cheeseburgers and magical pizzas.

But as I've grown older I'm afraid we need to take a break. While you catered to fat content and calorie intake labeling you neglected one big problem. And unfortunately it's kind of a deal breaker. over the last year I've realized the importance of watching sodium levels, I had no idea it was the source of my yo-yoing weight (going from 150 to 190lbs in less than two months isn't healthy nor is the reverse). My liver condition makes me extra cautious of sodium, and I try to keep it at about 1,000-1,500 mg per day.

But the thing is... even if I ate what is normally healthy (2,300mg) I still would be unable to eat any of your finely crafted foods! With the average American consuming morethan 3,400 mg of sodium per day, it's no wonder childhood and adult obesity is such a problem.

I'm not alone in my low sodium needs, it turns out children, seniors, and others overall accounting for nearly half of Americans are in the same boat. with the rise of fatty Liver disease (and NASH later in life), I can't be seen with you until you drop that sodium level, to a responsible amount.

What do I mean by responsible?

if you serve an item, which is 20% of typical calorie intake, keep the others in balance too. When Fat/Sodium/Cal are all kept at the same ratio of their respective daily intake it helps, I'm not suggested a menu overhaul, but rather a heart and liver healthy option. Potassium (cloride) is salternative however it too should be kept in balance if added.

Because when it comes down to it, if I'm on a road trip, I don't have many options. And I hate feeling that dirty feeling after an indulging meal. I love what we had, fast food...maybe we'll see each other again someday.

-Rick Nash

Party Trays

It's been over a week since I began the Harvoni treatment. It's by far the easiest one I've done. The side effects from it only enhance my existing symptoms. 

To say that any treatment is a breeze would be far from the truth, but one pill a day without the need to take it with food... it's a dream come true.

What's the big deal about taking a pill with food you may wonder, it's more of an associated distaste for whatever you eat your pills with. In order to accomplish the fat requirement with incivek I ate mini donuts with my pills, more than two years later I still can't eat them without feeling sick to my stomach. Even on a milder treatment like the last one, I can barely eat the fig bars I would so frequently eat to ensure my pills be taken with food.

While my doc OKed to use of my diuretics at half their present dosage I am reluctant to use them. The reduction of any potential interactions has always been a preference of mine. It's hard to know what kind of reactions will come from drug interactions. Recently I've learned the value of really keeping track of  my sodium levels, but just this last week I discovered something else I should look out for.

Ammonia. My body doesn't process things properly, and Ammonia is one of the major factors in Hepatic Encephalopathy. While I have lactulose, I seldom carry it on me, I have it in locations I frequent. the brain fog of encephalopathy (I have stage 2, Moderate HE) has very interesting triggers. While I must consume protein in large amounts to fight off muscle wasting, I can't consume too much or I risk triggering encephalopathy. It's yet another reason why I need to drink plenty of water, but the one thing I didn't think about was how present ammonia is in food.

Apparently I discovered the worst culprit of ammonia-high foods. A meat and cheese party tray.

Thanksgiving is already an interesting minimalist meal when sodium is a limit, but the idea of ammonia-high foods hadn't crossed my mind. After indulging in some meats/cheeses/crackers from a party tray, I assumed I would just have to watch my sodium balance. The brain fog came within a few hours, and thankfully I was able to determine what it was quickly and convey it.

To better prepare myself I found this handy chart for watching my ammonia consumption.

Apparently I'd decided on consuming from the top ten, a mistake I won't make again.  Keeping the balance is a priority. Similarly finding high protein foods with low sodium, and high carbs is never easy, but luckily Fresh and Easy carries an enriched egg pasta with super high protein. it's quickly become a staple in my diet.

Using more fresh ingredients and modifying menus off http://www.budgetbytes.com/ as well as using their grocery-recipe builder has made things much easier, and I recommend checking out the website if you haven't.

As for the Harvoni itself; to expand on what I mean by existing symptoms, I shall walk you through a day.

When I wake up, regardless of how much I sleep, or how much water I had the prior day, I wake up with feeling tired, and with an odd headache. The only way I can describe it, is as if my brain were scraping against a brillo pad. I'll fight the next few hours trying to avoid falling asleep, thankfully my GI tract will keep me awake, purging my system of anything left from yesterday.

If I fall asleep I'll wake up with a very specific hunger, it's a low blood sugar hunger. my body often mimics (typically nocturnal) hypoglycemia due to my inability to process most foods properly.

my eyes will feel strained within an hour or so, due to inconsistent blood pressure and random surges.

If I don't move much for any period of an hour or two, my ascities will show enough to stiffen the joints, but rarely more due to my proper balance of diuretics, water, and sodium intake. If I don't consume enough water/ magnesium, my legs will spasm out of control.

Emotionally I wear my heart more on my sleeve, having a hard time not being caught up in emotional moments.

As the day progresses my hunger dissipates and I can't tell until a few minutes beforehand how hungry I am. If I don't eat within a short time of that hunger, I'll simply fall asleep, and wake up with a headache.

Much like some people watch calories I watch my levels. Sodium intake, ammonia intake, protein intake, vitamin D intake, water intake, and how frequently I go to the bathroom. My remaining diet will respond to my analysis of my bathroom trip. Knowing colors, consistency, and unusual properties are essential to making sure a daily diet is healthiest.

As the evening approaches and I take my Harvoni, a dinner prior and a small dinner afterward fend off any potential hunger issues, and attempt to ensure tomorrow I won't wake up with a headache. by This time, no matter how much I've moved about, or what I've eaten I feel a jabbing sensation in my lumbar region, usually accompanied by the feeling of my right side being squeezed by a bony hand.

After the insomnia fades, I'll bounce between sleeping and awake for a few hours until I end the day with a 3-6 hour night's sleep.

Those are not the enhanced symptoms, everything I just said is now more pronounced.

If you were to meet me for lunch or hang out for a while, you may not notice. I seem a lil tired. "have an energy drink." some may say, because I look alright otherwise. When I was younger, this was irritating and frustrating, but as I've lived with this for so long now, it's easy to forget. And I'd rather people do forget, because this shouldn't define me.

So in belated thanksgiving,  I am thankful for my friends, family, and girlfriend for forgetting when it's not important, and remembering when it is. I am thankful that this will be the last thanksgiving I have to be thankful for a treatment, for a potential transplant. (And for another MRI with no liver cancer, yey!)

Sometimes symptoms begin to surface, and I slur my speech, my legs balloon, I turn yellow, and I say weirder things than normal. To help prevent that,  just keep me away from the party trays.   

Six months and a quarter million dollars

With my last trip to the hospital I wasn't really sure how quickly I'd be able to start up my fifth treatment.  Interestingly, the time I've waited for my jaundice to subside, and my bilirubin and INR to return to a stable level, was about the time required to approve me for the new treatment.

That's insanely quick. To help with some perspective these are my previous wait times for treatment:

Number 1: Three months for healthcare approval, RX deliveries, and prep, after the treatment had been out for two years.

Number 2: Three months for healthcare approval, RX deliveries after the treatment had been out for near four years.

Number 3: Six months(technically eight months because of the denials/appeals) for healthcare approval, RX deliveries, and prep, after the treatment had been out nearly two years.

Number 4: Seven months for healthcare approval, RX deliveries, and prep( as well as transplant tests) as the treatment had been out for two weeks. (but each aspect had received FDA approval nine months and about a year prior)

Number 5: About a month for healthcare approval, RX deliveries, as the treatment had been out for  about a month.

I'm very lucky to have an amazing GI, Transplant Doc, Advocates, and nursing teams in general.

I also want to be clear: none of this would have been this fast without the healthcare reform that has taken place in the last two years. In just what I've explained above, know that my first three treatments were through healthcare from the companies I worked for, while the last two, hail from healthcare through Covered California.

This blog isn't about politics, and I'm not about to shift in that direction, this blog is about my journey through treatment. I simply wish to extend my thanks to those who have helped bring me here.

Oh yea! I mean, I guess I already said it and kinda ruined the big surprise...but yes! I have been approved for Harvoni and I will start next week. Harvoni is the lovely new treatment recently approved belonging to Gilead, the makers of Sovaldi.

I've had a handful of questions from people regarding the new treatment, so let's go through some FAQ!

Harvoni is a two in one pill, it's a similar to a combination of the treatment I was just on.

But won't that just produce the same result?

No! There are differences in the medication, the two drugs are made in synthesis to work with one another in a single dose.... It's like oil and vinegar, when they're poured in the correct balance they produce a lovely taste, but if the balance is off it doesn't have the same effect. (Technically Ledipasvir and Simeprevir target different nonstructural proteins, Simeprevir targets NS3 and NS4A while Ledipasvir targets NS5A, but at this point we're talking grades of vinegar in terms of comparison.)

Isn't Harvoni really expensive?

Yes, and no. As a single pill, it's very expensive, but it costs less than both Sovaldi and Olysio combine. A really big part of understanding the cost breakdowns of these new treatments is what are they relative to each treatment as a whole, and how they can be administered.  Connie M. Welch did a great breakdown of this on her blog.

How long will you be on it?

I'll be on it for  24 weeks, provided my liver doesn't decompensate during that time.
Average treatment is to range 8-24 weeks, depending upon a whole host of factors.

How did you get it so fast, didn't it just come out?

Yes, it came out in October, and there are a few factors in my favor. The first is that my doctors submitted the approval forms as soon as they were able to. The second is that I've already failed the predecessor( also having just done the requisite tests). And the third, while I have a horribly cirrhotic and nearly useless husk of a liver I'm otherwise healthy and young.

What are the side effects?

Seeing that my liver isn't in great condition, It's roughly the same as before, photo-sensitivity, headaches, fatigue, nausea, dry skin. One of the more unforeseen things is the interactions with my diuretics, so that is sure to be interesting.

Needless to say I'm very excited to start up the new treatment.

This interim month in yellow has helped me put things in perspective and come to terms with my internal conflicts. Reflection after a tragedy is important, I have a much better understanding of a more personal sadness than I ever thought I may encounter. I can't be kept down, be silenced by my own self, so I shall view myself accordingly. After all, The difference between re-silence and resilience is how you see the I inside resilience.

I should be finishing up my treatment during Hepatitis Awareness Month, on May 7th. 

Slammed

As my bilirubin stabilizes i'll have another update next week. I see my doc today, and if all goes well i'll be well on the way to limbo number 5. How low can it go? Lets break the floor.

In the spirit of waiting, sometimes i have vision, not blind yet, so i wrote a slam.

Hep See.

A general malaise, passing the days, as they slip into a haze, as the days fade one to the other, there was a birthday there, my mother, my father, my brother, too many to keep track, I'll watch my back the counts rise, perspective and realize I'm frozen here, it's not fear it's self mutilation, thanks to a mutation, I won't evolve, can't be solved I drop into small statistics, I'll go ballistic if I can't, a reason to reason reason in this constant change of season. what's the weather like?  What's with the forecast, vials drawn together, never fast,  they ask me how I'm doing, you've got eyes, that's my reply it's painted in gold letter on my goddamn forehead, I'm heavy this shit's like lead.  Another letter in the mail, six months and a million dollars, k? Do I even have a choice?  If I'm weak they're my voice. I'll sit this one out, couldn't stand the doubt, my spirit's lite, my mind adrift, salt of the earth not here, I'm lost at sea practicing the alphabet and I'm stuck after just be.

Heat

There is no better day, than today to start something. 

While, for the most part, I can deal with the struggles of failure, I find sometimes my frustrations leak out in unexpected forms.

They push people away, but ultimately pull them in. While the world around me moves, I observe. It's glass all around me, and the sad part is that I put it there. Allowing others to see my life, to be better understand, and to help me build better relationships with them... and yet I know this glass can't allow it. But the winds of change will shatter this glass, cracks from friendship, family and love give me hope. I may burn brighter as more fuel from the struggle is thrown upon the fire within me, this glass will shatter.

I find myself inspired to write a little more flowery than normal, so I apologize for my consistent use of metaphor, last night however it actually rained, and in my sadness and frustration I felt inspired...

Last night I listened to the rain, I watched the water dance as the wind pulled it to it fro.

As shallow lights in their distance illuminated the water to an ever steady glow.

The wind began to howl, it felt from the excitement.

The water kept it's time, never once to fight it.

The lights; flickered, a chance to join in glee

And so I lit a candle, to let the fire see.

The flame inside moved along watching ever close.

But never once could it dance along, lacking like a ghost.

It smiled to me, to let it outside, not knowing what's in store.

That if the fire got too wet, it would not burn much more.

I cracked the window to better hear, of the ever pleasant beat.

The tapping of the drips and drops, the wind ripping at its heat.

The flame, afraid, it moved away, the wind was far too strong.

The candle knew it's place inside, it couldn't dance along.

The candle looked at me and burned a little brighter.

Then flicker twice, and out it went, it wasn't born a fighter.

The wind blew quick, the fire gone, and now left with the smoke.

Sitting beside the ember, glowing, dying, to me,  it spoke.

"I cannot dance with the others this way.

I find this fact to my dismay,
But if they still would like to play.

I'll change my form, from orange to gray."

The smoke around me, whisked far outside,
I watched, and smiled as it danced with pride.

The flame and smoke were one in the same,
But it was the wind, who inspired the change.