Trikafta Day 11: Acne Attack

THE BUMPS: While it is attractive to have 6 hard bumps on your stomach, it’s not as socially appealing to have little red bumps on your face and chest. Today when I looked in the mirror, I unfortunately noted more bumps on my forehead, cheeks, and chest than I saw on my stomach. #acne

While I haven’t had acne in over 3 years, this might be a result of my recent uptick in sweating that I described I in my previous posts, or could just be that I’m having a Zach Efron experience and turning 17 again. #fountainOfYouth

My First Cystic Fibrosis Appointment after starting Trikafta

LUNG CAPACITY CHANGE? In my previous post I talked a little bit about how I perceived that my breathing changed just hours after taking my first round of Trikafta. Was it all placebo effect? Maybe. However, my FEV1 (a measure of lung capacity) did go up a whole 1% since my previous appointment one month ago. Whether or not this was due to my increased effort in blowing, or simply because of my increased dedication to my breathing treatments is unknown.

Trikafta and Insurance

INSURANCE WARS: I wasn’t convinced that the Dark Side of the Force was real until I was introduced to Evil itself–insurance policies. After my doctor’s wrote out my order for the drug Trikafta, I waited a week to see if my specialty pharmacy had the Force to wrestle with my insurance company and obtain the glorious new drug. When it became clear that even the strongest Jedi were not capable of handling insurance, I stepped in and called to see what was the holdup–As it turns out, my insurance company secretly cancelled the order without informing me, my pharmacy, or my doctors. #FirstOrder

However, after putting in a series of pestering phone calls and messages to my insurance and CF prescribing team, my order was able to be covered in about two weeks.

SIDE NOTE: While I would’ve paid for the drug “out of pocket”, the only thing in my pockets are typically protein bar wrappers–the exchange rate of which rarely amount to the requisite $311,000 annually.

First Meal Post Trikafta: Burning mustard

HARMLESS MUSTARD?: About two months ago I unintentionally created a yellow mustard addiction; what started out as innocent dabbling on my OCD prepared lettuce wraps, turned into a nightly consumption routine of approximately 2+ tablespoons of the golden elixer. As I confidently indulged in my first bite of mustard-based lettuce wraps for the evening, I was shocked when my favorite yellow consumable burned the roof of my mouth and radiated pain into my sinuses; I felt betrayed as my docile yellow mustard friend bit me like a gallon of horseradish. #divorced

I’m happy to report that since then, aka a few bites later, mustard and I reconciled and are on good terms. Whether or not this event was associated with neurological problems I’ve been having, or is simply a universal sensation associated with CFTR modulation is to be determined. #DrugInteractionsMayOccur #MustardIsMyDrug

5 Hours After Taking Trikafta

BONUS OXYGEN: About 5 hours after taking Trikafta it became apparent that I didn’t have to breathe as much–each breath felt like the air was “filling.” It was like the opposite of going up to a high altitude where the air feels thin; Apparently I should’ve started Trikafta on my initial ascent to the top of mount Everest. #nextTime

SINUS FREEDOM: This was definitely psychological, but when I walked outside for the first time post-Trikafta, I noticed the unusual potency of my urban environment. As it turns out, air pollution doesn’t smell nice, but its undesirable odor can be cured if one acquires “extensive sinus disease.” #SolvedGlobalWarming?

ONE SIDED HEADACHE ABOVE RIGHT EYEBROW: While all almost all of my initial sensations/perceptions of the afternoon were overwhelmingly positive, the only thing that was slightly less than amazing about the afternoon was my headache; SIDE NOTE: This likely would’ve happened anyways, as I get migraines (particularly ocular migraines) everyday.

First Workout Post Trikafta

Three hours after my first dose of Trikafta, I decided to test my body with a workout.

THE WORKOUT

I did my usual daily cardio routine: 15 minutes on a cardio machine exerting as hard as possible, followed by 30 minutes of semi-relaxed exertion. SIDE NOTE: I don’t see why people think it’s so hard to workout on a daily basis; isn’t everyone unemployed and living with their parents while working towards college graduation?#millennial

STATIONARY BIKE

While I’d like to say that my first fifteen minutes of pedaling is akin to watching Lance Armstrong at his finest, in reality it’s more like watching a two year old in a trike. I’m about as close to cycling in the Tour de France as I am to physically biking to France. Yes, I live in California.

Then I noticed that everything changed due to my protein modulator; Unfortunately, the change did not make me competitive with Lance Armstrong, but it did make me ABSURDLY sweaty. By the time I finished, I couldn’t tell if I had done a fully clothed pool workout, or if I had really just been pedaling on a bike at a neutral 65 degrees. I’m pretty sure that I could’ve filled a small kiddie pool with my enviable salty secretions. #facet In reality, I can’t say there was a casual relationship between my taking the drug and my excessive sweatiness, but I’d like to blame my unsightly sweatiness on something other than me. #TourDeSweat

Breakthrough Trikafta Drug: How is it administered?

HOW DOES THIS DRUG GET INTO MY BODY?

While I was keeping my fingers crossed that the administration process would involve some sort of blue surrogate alien body floating in a liquid cylinder–unfortunately it does not. #NoPandora I don’t even have to give myself painful injections that would make me feel overly confident in my masculinity; I simply take pills 12 hours apart.

You’re probably saying to yourself, “Well that wasn’t nearly exciting enough to warrant a blog post.”

What if I told you that I had to take the pills with food?! Would that be exciting enough to compete with the Instagram update that just flashed on your phone saying that you got a new follower? Probably not. What if I told you that I can’t just take it with ANY type of food….. The food must have fat. Yep, that’s all–pills 12 hours apart taken with a fat-containing food.

Okay, I officially apologize for wasting your time. Sadly, technical details like this generally excite me more than social interaction #engineer

How I Feel about Being A Genetic Test Dummy

VERBOSE DESCRIPTION OF MY SOPHISTICATED FEELINGS

I’m excited.

WISDOM BEYOND MY YEARS?

Some would consider it unwise to be a first round “tester” of a drug that stems from an inchoate scientific field that is increasingly comprised of overly confident 20 something’s who are simply excited to be let loose with CRISPR. I, using my highly refined powers of reason, immediately accepted at the opportunity to try something that could seriously effect the way my body functions without a hint of hesitation. Looking forward, I hope that this drug works like it’s supposed to with my rare mutation (only 3 people in the US have my mutation… And one of them is my brother). Overall, this drug is empowering as it makes me feel as adventurous as Christopher Columbus without even having to leave the couch. I will, however, regrettably have to venture all the way to the uncharted territory of my refrigerator, as this drug must be taken with food.

HOW DO MY CELLS FEEL ABOUT CFTR PROTEIN MODULATORS?

They’re not salty about it. <– if you get this joke you are either a hardcore CF expert, or you paid wayyyyy to much attention in biology.

WHAT I’VE LEARNED IN WRITING THIS POST

I’m so SOPHISTICATED that I didn’t even know how to spell SOPHISTICATED.

First Dose of Trikafta Making Me Superman?

Minutes after consuming my first dose of Trikafta, the hot new CF protein modulating drug, I felt a serious psychological and physical high; After taking the first two glorious capsules with a hefty meal consisting of 2 pieces of popcornopolis popcorn, electrolytes, and some peanut flour (I’ve only eaten one meal a day for 6 years in order to regulate pain associated with my chronic pancreatitis… So this meal was a “bonus”) I could feel, my body changing.

ANY NOTEWORTHY SENSATIONS HAPPEN WITHIN THE FIRST HOUR OF TAKING IT?

At first, I felt a wave of excitement and a tangible increase in energy. While this side effect was amazing to experience, it’s not very interesting to read about–so I’ll give you the other juicy details. Then came the runny nose, heartburn burps, and the sweaty face and hands.

WARNING: The following content may contain a few bodily details that I personally wouldn’t want to read about if I were eating right now. So put down your fork and proceed with caution.

MY DRAMATIC JOURNAL ENTRY: Immediately, I felt my digestive system start churning. This led to lots of exciting noises like rumbling, grumbling, burps,and sounds associated with “pressurized air excretions” from the only hole on the backside of my body. These little “air leaks” made things more sensory, both for me and my family, as it added an element of smell to the experience. Encapsulating quote, “I need to open the window.”

Shortly thereafter I began salivating–lots and lots of salivating. I think that my body thought that I was entering a hick spitting competition <—which could actually be quite an interesting, fun “cultural” event to attend, if said event exists.

Lastly came the “lung pops”. It felt as though the muscles or ligaments that held my left lung to my rib cage were detaching and collapsing inward. While I’d like to pretend that it was a major, terrifying medical event akin to cutting off an arm to escape a Utah crevasse, in reality it was more like an odd side burp cough thing.

OVERALL: If I raced a speeding train right after I took it, I’m pretty sure I would’ve won….If that train was named Thomas the train, was a few inches in length, and ran on double A batteries. #reality