Well, it’s been a wild year! I made it to my 18th birthday, graduated high school on time and with grades I can boast about, faced my fear of driving and got my license, am almost ready to send my book to the publisher’s (which reminds me, I should probably be looking for potential publishers who may be willing to publish my book for me), figured out how to sign myself up for college, and, just today, I took my first dose of Trikafta!

At the moment, I’m struggling with anxiety. It’s always scary to take a new medication, especially something like Trikafta. To combat that, my grandma Debbie gave me a CBD gummy, which was hopefully way stronger than the wussy stuff my mom uses. I took it about two hours ago, and I’m not feeling any less anxious, which may be a sign that I’m just not affected by CBD. According to multiple websites, I should be feeling more calm right now, but I don’t feel any different. I’m still just as anxious as a jackrabbit in coyote territory. But, I’m keeping it under control. 

The initial joy about the medication coming out wore off about a month ago, and then I started reading about other people’s experience with Trikafta and freaked myself out. Much like Symdeko and Orkambi (which are the weak cousins of Trikafta), the medication will likely make me feel like shit for at least a few days. 

Due to its strength and effectiveness, Trikafta puts almost everyone who takes it through a mucus purge. The intensity of the purge depends on how severe the person’s CF is. I’m not concerned about the coughing part of the purge. I’m used to coughing up mucus, and am honestly excited to potentially cough up mucus that’s been in my lungs for almost my entire life! I don’t know if there’s much for me to cough out, but I’ll soon find out. I’m already coughing and feeling things moving around in my lungs, and I took my first dose of Trikafta about three hours ago. 

I’m more concerned about what Trikafta might do to my digestive system. Trikafta not only makes my lungs and sinuses purge out mucus, but clinical trials and other people’s anecdotal experiences have shown that Trikafta also purges mucus out of the digestive system. That’s a great thing! But, I’m worried about overloading my body with enzymes. 

As y’all know, I take pills to digest my food. If I don’t take my enzymes, my meal will not be digested. However, it sounds like Trikafta might clear out my pancreas so it actually can eject some of the enzymes it produces into my system. I don’t know if Trikafta can reverse 18 years of damage caused by my pancreas digesting itself, but I might not need as many enzyme pills as I typically do, and I will probably gain some actual weight (at the moment, I’m still several pounds under the minimum healthy weight for a woman my height, and I want to gain at least ten pounds so I won’t get dangerously skinny if I get sick). 

However, there’s a real possibility that I’ll get severely backed up if I take my regular dose of enzyme pills while my pancreas secretes enzymes. I have a couple of internet buddies who have CF and got on Trikafta not long ago. One said they didn’t have any serious side-effects and have been feeling much better. The other said they feel much better, but almost had to go to the ER because of constipation issues. Unfortunately, constipation isn’t the most uncommon side effect. It’s pretty uncommon, and I hope that I can avoid it, but there’s still a chance I’ll get backed up. 

As a precaution, I took a supplemental laxative not too long ago, and have doubled the amount of fiber I typically eat. If I get sick, I’ll reduce the amount of enzymes I take. If I start feeling sicker (which, God forbid happens), the ER isn’t far away, and my grandma Debbie is a nurse who knows how to deal with that kind of stuff. So, I feel pretty safe, knowing I have a trained professional keeping a hawk’s eye on me and I am not far from additional help if I need it. I’m still scared as hell. But, I’m in good hands. 

Another side effect I’m worried about is the possibility of developing a migraine. Symdeko gave me a migraine that lasted for almost a week. Trikafta is Symdeko with one more medication. Symdeko is made out of two medications (tezacaftor and ivacaftor), while Trikafta is made out of three medications (tezacaftor, ivacaftor, and elexacaftor). I’m hoping the tezacaftor is the medication that gave me a migraine, so I won’t have to go through it again. But, there’s still a chance I might end up with a pounding migraine simply because every cell in my body will undergo some pretty drastic changes over the next week or so. 

Just as I was finishing the previous paragraph, I got hit with a massive wave of exhaustion, but it’s a really strange feeling of exhaustion. My eyelids aren’t heavy, and I’m still anxious and jittery, but my body desperately wants to lay down. Also, my cough has gotten increasingly more aggressive. I wouldn’t say it’s gotten worse, because the cough signifies that my body has accepted Trikafta and it’s doing something it’s supposed to do. I’m definitely going through some sort of purge at the moment, which nothing but a great sign. 

However, I have a horrible taste in the back of my throat from coughing up shit that’s probably years old. I don’t know how to describe it. It’s pretty terrible though. I guess it tastes like what the smells of death, farts, mold, and my dog’s breath if they were combined and put into a spray. 

Also, I’m getting a bit of a headache, so I’m chugging down salt and water like my life depends on it, and I will also take a handful of ibuprofen a little later. My liver tests came back, and it’s doing considerably better, so I trust my liver can handle everything I’ll be throwing at it over the next week or so. 

I’ll keep y’all posted. Hopefully the side-effects don’t get much worse than this. But, I’m prepared for the worst. 

I hope the purge won’t interfere with my ability to drive. My grandpa Lyle and grandma Connie are back from Nebraska, and I’m supposed to head over there tomorrow since my grandma Debbie and grandpa Shawn both have work on Sunday and Monday, and I don’t want to be alone in case things get rougher. I should be able to drive so long as I’m not falling over or coughing so much I can’t get more than a few breaths in at a time. But, if I can’t drive, I guess my grandpa Shawn will drive my truck to my other grandparents’ house while my grandma Debbie drives me over there too. 

So, I’ll end this blog, get myself a big glass of eggnog to fight off the bad taste, and lay down for awhile. Exciting things are happening, and I’m excited to possibly feel much better in the end! The science is promising. The stories from other people who have been on Trikafta are promising. The current symptoms I’m experiencing are promising. Hopefully, Trikafta far exceeds the cautiously optimistic expectations I have for it. 

Update: 

It's well past midnight. I've officially been under the influence of Trikafta for a full 12 hours. I've stopped coughing, though every time I force myself to cough, something comes up. It's only tiny little chunks of boring colored mucus, which is good. My sinuses, however, are a different story. They're draining so much. I'm also really, really thirsty, which I've been told is a common symptom as my body purges all of that mucus. Thankfully, I'm not having a hard time breathing. I'm more concerned about how much mucus I might be swallowing. I don't want to feel sick if I can help it. But, if I wake up in the morning feeling like I've been eating nothing but bean burritos from Taco Bell for a month, I guess it's a small price to pay for the long term benefits. 

Like I mentioned before, everything is turning out to be very promising, and I'm really trying not to freak out about it. I know I've been blessed with amazing health considering the circumstances, so the benefits I get from Trikafta will probably not be as drastic as they've been for many other people. However, I already feel like I can breathe a little easier. I don't know how to describe it because it's a new feeling. My breaths just feel smoother and like they fill up my entire body. It's certainly not a feeling I'm familiar with, but I'm gonna revel in it and hope this will be my new normal. 

However, I am feeling pretty sick to the stomach and am bloated. That might be because I took laxatives earlier just to ensure everything goes smoothly, though some other people who weren't so proactive have also reported feeling this way. So, it's hard to say for sure if this is due to Trikafta or not. I'm just glad that I'm not feeling so bad I can't function. 

On the flipside, for the last several hours, I've been starving! I knew Trikafta would increase my appetite, but I didn't realize it would kick in this fast! I'm actually kind of worried about what the grocery bill will be, now that I feel like I could literally eat an entire cow and still have room for more. I might seriously have to run home and raid my own freezer for meat to keep the grocery bill relatively reasonable. I have about 20 pounds of beef burger left, and another 20 pounds of roasts I'm probably gonna attempt to cook as steaks out of pure desperation. I've already demolished most of the Christmas leftovers, and am currently scarfing down an entire one-pound bag of beef jerky.

We still have plenty of food, but I'm gonna have to go to a grocery store tomorrow since I'll be going to my other grandparents' house. They certainly won't be prepared for my growing appetite. Maybe Trikafta doesn't cause everyone's pancreases to start working. Maybe it just increases everyone's appetite to the point they eat so much they gain four or five pounds a month. To be honest, I have no issues with increasing my calorie intake from 4,000 calories a day to 20,000 calories a day. If that's what my appetite demands, I'll find a way to deal with it.

I think the first step is to call my local police station and have them put my name on a call list, so if anyone hits a deer or an elk (which is becoming increasingly common in some places near my home), and doesn't claim it, I might end up with some venison! I'll probably have to step up my fishing game too. I'm not what one would call a good angler. I can't even remember the last time I've been successful on an actual fishing trip (what I did in Florida does not count as a real fishing trip. I didn't have to hike around, tie my own lures to the line, dig for worms, clean my own fish, or endure criticism from uncle Courtney for not holding the fishing pole the right way. Uncle Courtney also teased me for catching only tiny fish off the coast of Florida, even though I ate the pufferfish I caught, which could've easily killed me if the chef didn't prepare it correctly). That obviously needs to change, especially since I might end up having the appetite comparable to that of a grizzly bear preparing for winter, from now on. 

I also plan on going to uncle Courtney's pretty soon, and claiming the leftover wild game he's been using as a lure to get me to drive all the way to Greeley. I'm not going this weekend with all that snow. Not unless my appetite gets to be as insane as people are saying it will be. If that happens, not even the gates of hell will stop me from raiding the freezers in Courtney's basement. I also plan on going to Sushi Katsu at least once this coming week for their sushi buffet, and see just how much of that shit I can eat before I get kicked out. 

I'm still embarrassingly skinny, so I really hope my appetite continues to increase, and my pancreas will start to work a little better, so I won't feel so weak and tired all the time. I don't think I'll get fat on Trikafta (though, that would be amazing if it was possible), but I hope to gain enough weight to feel comfortable losing a few pounds if I get sick. That's the goal, anyway. 

In the meantime, I'm kind of just waiting to see what happens. The future is very uncertain, and that kind of scares me, considering what Orkambi and Symdeko, the weak cousins of Trikafta, did to me when I first started them. I mean, I survived and it was well worth the pain. But, I don't want to go through hell like that again. Unfortunately, I don't really have a choice. So far, things haven't been horrible. Of course, I still feel like crap. But, it's not like I'm dying or begging God to make it stop. Hopefully, it doesn't even get close to that point, though I'm prepared if it does. 

The next few weeks are just scarily uncertain. Only 512 people participated in the Trikafta study, and they were very carefully chosen. Just like everyone else on Trikafta, I'm everyone's favorite science experiment again, and I'm just as curious as everyone else is. But, I'm also absolutely terrified. If things go south for a little bit, I'll experience everything first-hand. I'm not watching a test subject. I am the test subject. I don't have much more than a very vague list of side effects and others' anecdotal experiences to guide me. If things get bad, I'm on my own. I'm entirely at the mercy of a medication that nobody really knows much about. Sure, humans created it, and they have a general idea of how it works. But, what will the next five, ten, fifteen, twenty years look like? Nobody fucking knows. The possibilities are literally endless at this point. 

I'm one of the first people in history to try a medication as strong and effective as Trikafta. This medication, like Symdeko and Orkambi, literally changes the anatomy of my cells. Some people have compared Trikafta to a cure, which, based on the numbers and symptoms they provided, it honestly is, just as long as the person continues to take Trikafta. However, this is far from the war that will end all wars. We've still got a long way to go before Cystic Fibrosis is a curable condition, if it's possible to cure a genetic condition. I'm not expecting it to change my body so drastically that I'm literally cured. But, I do expect to experience some much-needed benefits that will extend my expected lifespan to be as long as my peers', and improve my quality of life. I've been really struggling these last few years. It would be great if things stopped going downhill. 

But, for now, I'm just gonna sit back, try to relax, go to sleep, and enjoy whatever awaits me in the near future.