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.