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.
Day 2:
So far, things have been... interesting, I guess, for lack of a better word. I simultaneously feel good and bad. The good news is, I feel like I have some energy. I mean, I'm still tired, but not as tired as I usually am. I woke up this morning pretty early, tried to fall back asleep but couldn't. So, I got up and ready without having to start my day with a diet Mountain Dew first. Also, while I'm still a little crackly and my sinuses are still draining, I feel like I can breathe easier than ever, and the headache from yesterday hasn't returned despite my sinuses being a little tender.
Sadly, I do feel like I have a cold. I know it's not the case. I don't actually have an infection. My body is still working on getting used to the medication, and I have a long time to go before I become normal. But, I do feel pretty tender and sore. My back and sides are a little more tender than everything else. But, the pain is minimal. I wonder if this is all due to Trikafta, or because it went from warm and sunny to another blizzard in the last 48 hours. I typically feel a lot worse when the weather changes this drastically. I still feel like crap, but not so bad I won't be able to get through the day without caffeine, a nap, and a handful of painkillers. I'm actually very functional and energetic.
Now, this is where it gets interesting. I braved the weather to brush the snow off my truck and my mom's car (she's still out of town, but her car is parked about half a block away from my grandparents' house, and she wanted me to brush the snow off it). It's not horrible out there, at least compared to what hit during Thanksgiving week. But, the wind has been howling all day, which makes everything colder and harder for me to deal with.
Anyway, I sprinted to my truck, had to dig around a bit to find my two snow brushes (which had slid under the seat thanks to my tendency to slam on the gas), quickly got the snow off my truck, ran down to my mom's car and brushed the snow off it, bolted back to my truck, started it up to defrost the windshield completely, put the brushes away after that, locked everything up, and ran back into the house, all in less than five minutes. When I got back inside the house, I noticed I wasn't wheezing or struggling to catch my breath, like, at all! Cold weather typically kills my ability to breathe right away, and running/hiking have never been very easy for me either. They always result in me begging for air and having to rest. Except, this time, I was fine.
Keep in mind, I was moving for the whole time I was outside, except for maybe the thirty seconds it took to start my truck and get the windshield wipers going. Even then, I wasn't wheezing and didn't feel like I had to put my arms on my head to stretch out my rib cage. My heart wasn't racing. I didn't feel weak. I just felt normal, like I hadn't just ran a block at full speed and brushed off two vehicles in the cold. It was a very different experience. It was almost alarming at first, but I know, deep down inside, that my ability to breathe better can only be a good sign.
Will these good symptoms continue and become my new normal? I don't know. Nobody knows. This is all experimental. However, everything so far has been pretty promising. My appetite has gone down a little bit, but it is still impressive. My digestive system seems unchanged at the moment. It doesn't surprise me, to be honest. My pancreas has been digesting itself for my entire life. I doubt it can be saved. But, that's ok. I'm used to it. I can handle it. Trikafta is not a cure, but it's the closest thing to one we've got.
Day 3:
Last night really sucked. I got very bloated and uncomfortable for some reason after dinner, even though I didn't eat anything that could've caused the bloating. I had the same meal I had the night before. Everything I tried to solve the problem didn't work. I was unable to sleep because it felt like my insides were getting pushed up into my rib cage. Thankfully, I wasn't in pain. But, the pressure I felt inside was just as bad as actual pain. Somehow, I managed to fall asleep, and five hours later, I woke up again, still bloated, but feeling a little better.
I knew that bloating wasn't a good sign. It's an uncommon side effect. But, I still suffered from it. So, I made sure to eat even more fiber than I have been, and if things didn't get any better by the afternoon, I would take three doses of laxatives. Many of those who experienced bloating ended up in the ER a couple days later with severe abdominal pain for all sorts of reasons, and I've been determined to not end up like them. I'm all too familiar with abdominal pain so severe I wonder if it's a medical emergency. I just never took the time to get my stubborn ass to the ER to get checked out, even though there have been times when I probably should've.
I didn't have much time to ponder the "what if" questions this morning. Dad was coming over to get me to hang out for a few hours. I took my third dose of Trikafta with a hearty glass of eggnog (Trikafta requires me to eat at least ten grams of pure fat with it in the mornings, because it needs fat lipids to bind to in order to work. Why that is, I don't know. All that I know is that I'm starting to hate eggnog), and got into my dad's soccer mom SUV when he arrived soon after.
I got a lot of gift cards for Christmas. I asked mainly for art supplies, but since most of my family assumed I knew way more about what I meant by "art supplies" than they did, they just gave me a bunch of gift cards, which is perfectly fine by me. I ended up spending $25 on sketchbooks since I've been running out of clean paper for my drawings, and called it good.
Dad then drove us to Cabela's. He wanted to see if they had any coats he liked, while I wanted to pick up some ammo for my .243 and spend at least two hours gawking at the firearms I'll probably never make enough to own. When we arrived, I immediately took off for the hunting section where the guns and ammo were, with Dad trailing behind me. Unfortunately, the ammo I was looking for had sold out. Everyone likes those 90 grain Winchester rounds for their .243's, including me. But, I still got to check out a bunch of firearms, especially the shotguns. One of these days, when I'm not broke, I plan on getting myself a 20 gauge shotgun for bird hunting and skeet shooting.
Dad's been pressuring me to get a 20 gauge shotgun the same way I've been pressuring him to get a dirtbike, so we can compete with each other at the skeet yard. My dad hasn't gone hunting in over twenty years, but he wants to get back into it, especially since I'm an avid hunter and reintroduced wild game into my dad's diet. I'm actually kind of surprised by my dad's desire to hunt and fish again. Several years ago, he was a staunch supporter of radical gun control and supported the animal activists that called for the ban on trophy hunting when Cecil the lion was killed. Now that his daughter's an avid hunter, and he inherited some of his father's firearms, I think his views are changing. He won't admit it, but I'm slowly turning him into a gun nut. I can tell just by the way he was looking at the firearms, and how excited he got just from talking about skeet shooting with me.
This year has been pretty hard for me, hunting wise, because I missed out. I want nothing more than to go hunting, but I'm stuck at home because I wasn't as prepared as I thought I was, and snagged no tags. I would've filled several freezers with delicious elk meat had I been more proactive in getting my tags. But, I learned my lesson. Next season, I won't miss out on any hunting opportunities, and I'll hopefully bring home plenty of wild game to feed myself, and share with anyone who wants it. There's no way in hell I could stuff 300 pounds of elk meat in a freezer only meant to store 170 pounds of meat if I use my entire body to pack the meat down.
After spending an impressive three hours at Cabela's, dad and I left and headed to lunch. I wasn't very hungry, but I still shared a sushi roll and a plate of potstickers with my Dad. As I was eating, I noticed I wasn't nearly as bloated as I was in the morning, and eating didn't feel like a chore like it often does. Also, I wasn't nearly as tired as I usually am after spending so much time on my feet. My flu-like symptoms were also mostly gone. Overall, I felt good and healthy.
Now, several hours later, I still feel comfortable and full of energy, although the right side of my abdomen feels a little swollen. I'm not in pain, I can't see anything abnormal, and my body seems to be working as it should, so I think I'm ok. I feel better than ever before, in ways I just don't know how to describe. I feel like I can breathe easier, even outside where it's still very cold. Every time I yawn, I don't feel like I have to take in multiple breaths to feel satisfied. My pulse doesn't feel as hard as it used to be either. But, I'm very thirsty for some reason, which is a common side-effect of the medication. Regardless, Trikafta's doing something good for me. That's for sure!
However, other than that, nothing has really changed. My sense of smell is still pretty poor. My appetite is the same as it's always been, although I no longer have to fight my gag reflex to swallow food when I don't feel very hungry. I'm still a perpetually cold person. My fingers are still clubbed. But, it's only day three, I started this medication while I was incredibly healthy to begin with, I have the Double-Delta F508 gene, instead of just the single Delta F508 gene of CF, so Trikafta isn't as effective for me as it is for others, and Trikafta is not a cure.
I still have Cystic Fibrosis. I still have to take a lot of pills and do a lot of treatments to stay healthy. I'm still sicker than your average person. But, I'm hopeful that Trikafta will drastically improve my quality of life in the long run, so I can live as though I don't have CF, so long as I'm taking the medication (and my liver doesn't attempt suicide). But, like I said, it's only day three. Trikafta affects everyone differently. So, I have no idea what the future may hold for me. I'm just hoping Trikafta will make it possible for me to do the things I love to do without having to worry about too much pain or illness. I don't have any real expectations. I'm just along for the ride, and am hopeful for the best.
Day 4:
Last night, I had trouble sleeping. I was bloated, but not to the point I was too uncomfortable to sleep. I was pretty comfortable. My body just wanted to move, but I forced myself to stay in bed and stare at the wall until my eyelids eventually became heavy, and I fell asleep. I woke up this morning feeling pretty groggy as a result of not sleeping too well, so I slept in an extra hour. That's still better than my usual. I've woken up in the mornings only to fall asleep for another four hours too many times to count.
Once I was out of bed, I had my typical Trikafta breakfast, which consisted of a glass of milk, a glass of eggnog, and some lunch meat. Not exactly what I'd call a tasty breakfast, but I still see food in terms of how much fat and calories are in it, not whether or not it tastes good or looks appetizing. Unfortunately, I haven't been feeling very hungry still. I don't really struggle to eat when I have to since my gag reflex has remained at bay, but eating is still something I rarely enjoy. I'm hoping that will still change in the coming weeks, but most of the people who experienced a sudden increase in their appetite on Trikafta experienced it almost right away. And, I'm on day four. I was starving for maybe a day and a half before my sudden burst in appetite subsided back to my usual. So, who knows. Maybe I won't eat the entire fridge in one sitting after all. But, at least I don't have to force feed myself while my throat convulses. That was hell.
Aside from that, I've been noticing some minor abdominal pain and discomfort. I might have to reduce my enzyme intake. I didn't think it could be possible, but I am noticing minor symptoms related to a surplus of enzymes. Maybe my pancreas still has some life left in it after all! I still took all four enzymes with my breakfast this morning because it was so high in fat and calories. But, I skipped them at lunch, which may or may not have been a good idea. I guess I'll soon find out.
My cough has also returned, bringing with it the awful taste of death and decay from my lungs. I can feel things moving around quite a bit in my lungs, especially in my upper lungs. Every cough, voluntary and involuntary, brings up mucus. I am coughing stuff out that's been nearly every color of the rainbow, but most of the mucus is just stuck to my throat and will probably end up in my stomach.
However, while I am still having crappy symptoms, I can't really say I feel like shit. Once the grogginess of this morning wore off, I felt like I had already gotten my morning dose of caffeine, but I hadn't. I still chugged down a mountain dew on the way to the grocery store with my grandma, but I don't think it had much of an effect on me. I was already wound up! After we spent an hour fighting the insane crowds at Costco, we had lunch. Unfortunately, I wasn't very hungry, and only had a little less than half of my meal. But, like I mentioned before, I didn't struggle to eat it. I didn't enjoy it so much, but I didn't have to give myself a pep talk each time I took a bite.
After lunch, we returned, and I helped Grandma put the groceries away, before grabbing my keys to get more groceries that were kept in reasonably-sized packages. I sprinted to my truck, excited to finally have an excuse to drive and get out of the house more! I was just overflowing with energy! Our most recent snowstorm dumped a lot of snow and ice on our streets. My grandparents live at the top of a very steep hill. There's other, longer ways to get to their house to avoid that hill. But, I have many childhood memories of having to walk several blocks to my grandparents' house because Mom's shitty cars couldn't make it up the hill. Lots of times (including today), the neighborhood kids go sledding down the hill since only a few people have the ability to drive on it when its blanketed in snow and ice.
Fortunately, I chose my vehicle with that specific road in mind, and had no trouble driving on it today. In fact, I had no trouble driving at all. I was actually having fun driving on the snow closer to the shoulders while others struggled on the clearer parts of the road in their shitty little sedans. I only ever feel my anxiety rise when I'm confronted with heavy traffic. Even then, I still feel comfortable enough to just focus on whatever redneck county rock music I've got blasting through my speakers, instead of coming up with a worst case scenario for everything. Of course, I still have my "what the fuck are you doing?" thoughts about the driver six cars ahead of me who didn't use their blinker, but I'm not thinking about what could happen if I got T-boned by a semi while going through an intersection.
Once I got to the grocery store, I walked much faster than I typically do. I just felt like I had to move, which is a feeling I've never had before. It wasn't out of anxiety or anything bad. I just needed the exercise, I guess. I spent the least amount of time in the grocery store than I ever had before, and ran all the way to my truck, which I parked far away from everyone else. When I got to my truck, I wasn't wheezing or struggling to catch my breath again. My heart rate had barely sped up. I didn't feel like I'd done much of any running at all, let alone with a 20 pound bag of dog food in one arm, and snacks in the other.
I chucked everything in the backseat, got in the driver's seat, and sped home still full of energy. On the side streets, I had fun plowing through the snow on the shoulder of the road, while I giggled at those who could barely get any traction. I parked in front of my grandparents' house, grabbed the groceries, and ran up the flight of concrete stairs to their front door, all without breaking a sweat. I couldn't hide just how excited I was to have all that energy, even though a handful of negative side effects had returned that morning.
Now, I'm still bursting with energy, but am keeping myself relatively calm. I still have a cough, but the stuff in my lungs stopping moving around, and now it's just dry. Hopefully, my cough will stay away for now, until the mucus in my lungs get dislodged again. I've been feeling the mucus slowly pushing upwards into my throat, but unfortunately, it hasn't moved at all in the last hour or so.
Hopefully, things will continue to improve, and soon the side-effects will wear off when my body gets fully acclimated to this new medication. But, as I mentioned before, this medication is still a massive experiment. It affects everyone who takes it differently. No two people have the exact same reactions to the medication. However, I'm glad I seem to be benefiting from this medication. I didn't expect it to do so much when I first started it, and I'm really blown away by how effective it has been so far.
Update:
Well, how the hell do I start this?
I guess I'll start with admitting that my reproduction system has been severely impacted by Cystic Fibrosis, though I've been too embarrassed to talk about it (until now). My menstrual cycles have never been normal. They've always been unpredictable and extremely painful. During the first couple of days of each cycle, I'm often doubled over in pain from the menstrual cramps I get. They make me nauseous, and I've cried many times from the pain, which is impressive considering I have a very high pain tolerance. It's so bad, that doctors have every reason to believe I have Endometriosis.
Endometriosis is when the uterine lining that is typically only found inside the uterus, grows on other organs outside of the uterus. During every menstrual cycle, the lining tissue swells up, and there isn't much I can do to help the crippling pain it brings.
So yeah, it's hell.
Cystic Fibrosis, as you all know, causes problems for every organ that is covered in mucus in my body, including my uterus. CF causes my body to create a lot of extra mucus, which builds up in a lot of places, including in my uterus. That's why so many women with CF have problems with their menstrual cycles and getting pregnant. CF doesn't cause infertility in women like it does in men, but the extra mucus in the uterus definitely makes life harder for us.
Also, as I've explained before, Trikafta puts everyone through a mucus purge for awhile. People have been purging from all ends thanks to the medication, and the stories I've read online are just something else. So, as happy as I am to say I probably don't have Endometriosis, I am extremely disturbed by what Trikafta revealed to me not very long ago while I was just trying to have a long, relaxing shower after another productive day. Don't get me wrong, I'm really glad that mucus is on its way out. But, I've never been so grossed out and downright disturbed by anything ever, which is something I never thought I'd ever say about anything.
Day 5/6:
Well, my energy levels are still impressive. Also, my cough has diminished and I feel like I can breathe better. But, that's about as far as the good stuff goes. It's become clear to me that my pancreas is working as it should, against all odds. However, I overdosed on enzymes, and I'm paying the price.
I heard plenty of horror stories regarding constipation, which seems to be a common issue among those who, like me, have had a dysfunctional pancreas all their lives. However, I didn't think it would happen to me, because I've been proactive in eating fiber and drinking laxatives, while also decreasing my enzyme intake.
Day five I noticed things weren't working quiet as they should. However, I assumed, wrongly, that things would clear out by the evening, and if not, I'd surely be cleaned out by later in the night. I stuck to my fiber and fat rich diet, though decreased my enzyme intake from four with meals, to three with breakfast and two for each meal I ate the rest of the day. It doesn't feel right to me to be taking less enzymes. Usually, I go into autopilot and just pop the four pills into my mouth without a second thought. But, recently, I've had to hold my actions captive to be sure I'm not overdoing it. However, clearly, two to three enzymes are still too much!
Now that it's day six, I'm getting desperate. Like, really desperate. I started to hurt not too long ago, and now the pain is getting to me. It's not so bad that I'm unable to take it. But, it's bad enough to keep me housebound even though I still feel very energetic and motivated to do things. I feel good enough to leave the house. My abdominal pain is manageable. But after drinking two large doses of Miralax and snacking on a pound of dried prunes, I have every reason to be afraid of my impending suffering. I know it's gonna come quickly and suddenly. I just don't know when. However, if nothing substantial happens by tomorrow, I'm gonna go all out to prevent myself from having to seek medical attention.
By that, I mean I'm gonna ingest an entire bottle of Miralax in a half gallon of apple juice if the pain doesn't go away in a day. That's what the docs have told me, and considering the pain and discomfort I am in, I'm willing to do it even though it might make me very sick for a few hours. Well, I'm already soaked in sweat from being sick. So, I'm not sure how much worse it could get.
I'm worried that I won't be able to drive home. Mom comes home tomorrow, and expects me to drive home too. But, if I'm still sick as a dog, I won't go home. Not only would I be too distracted by the pain to be able to pay attention to the road, but my grandma threatened to take my keys if I'm clearly still sick but want to drive anyway. To be honest, I'm not always good at admitting to myself that I'm too sick to do XYZ, so it's a good thing my grandma's got an eye on me to make sure I'm not dying and I can drive.
So, I guess I can only hope and pray that the days ahead will be better. But, for now, I'm uncomfortable and in a lot of pain. As I said several days ago, I'm prepared for the worst but am hopeful for the best, and no matter what it will be worth it in the end. And, as of now, I'm sticking to my word. Yes. I'm in pain. No. I'm not gonna stop taking the medication because it has adverse, yet very temporary side-effects I knew about and am prepared for.
The pain I'm experiencing now is just a small price to pay for the benefits I've seen from Trikafta so far, and the benefits that science says are yet to come. I mean, I still have tons and tons of energy despite my current issues, I'm only on day six, when it will take months for my body to fully transform into whatever Trikafta programs it to transform into. And for the first time in my life, I'm actually more excited than frightened of my future. Sure, I'm still fearful of a lot of things, and have zero idea of what the hours and days ahead will bring. But, I'm also ready to take the bull by the horns and get on with life much better than ever before.
I'm no longer facing a future of relying on disability and welfare to live (if one can even call that living). I'm no longer facing a future where my condition continues to deteriorate exponentially. I no longer feel guilty and ostracized for being so sick and so well at the same time, because I will soon no longer be so sick. Basically, I'm no longer facing a sedentary future of dependence, full of worsening health issues as my disease gets worse over time, all thanks to Trikafta, which I never believed could be a reality.
Dr. Francis Collins (who is a devout Christian by the way) was right all along. He and a couple of his buddies discovered the screwed up CFTR gene in 1989, and has been working on correcting the issue without screwing up anything else ever since. He researched the shit out of everything, creating new and increasingly effective treatments and medications over the years that led up to Trikafta, which, for a lot of people, is literally a cure to CF so long as they keep taking it. I never believed I'd live to see the day when CF actually stood for Cure Found instead of the disease. But, now I actually see a cure being discovered within the next decade or two.
Remember where I was almost two months ago, faith and health wise? Remember me talking about how I was so pissed off at God for allowing my CF to progress in ways I couldn't really treat? Remember the joint pain I suffered that was so severe I couldn't ignore or hide it? Remember me mentioning that I was going to start taking insulin and a medicine that would stabilize my blood sugars, so I could digest sugar better and hopefully not have low blood sugar issues anymore? Remember how pessimistic and angry I was even when this new medication was approved, because I didn't really believe the hype? Well, God certainly heard my cry for help. And, the hype is fucking real!
People on Trikafta are taking sweat tests after battling CF for their whole lives, and the sweat tests cannot detect any abnormalities, meaning their bodies are working well enough to fool the sweat test (which is the ultimate screening test for CF) into thinking they don't have CF. People (including myself) are able to digest their food using their own pancreas for the first time, rather than relying on medication to do it. CFRD, CFAA, and all other CF-related diseases are disappearing. A front recently blew through, and guess what? I felt literally nothing. I didn't even know it was coming until the wind started to roar against the house. And, I haven't ventured to the fridge in search of sugar at all since I started this medication.
People's lung functions are shooting through the roof. I read that one gal, who was on the trail, went from having a 71% lung function to having a lung function of 145% in two years! And I thought 121% was an impressive number. People who have relied on welfare and disability their whole lives are getting into well-paying jobs! People who once struggled to gain weight are going on diets and exercise routines, because they gained too much weight on Trikafta! People are even talking about how they got shitfaced on New Years' and lived, which is crazy, because CF negatively impacts the liver just like everything else. But, I guess after the initial Trikafta cleansing period, our livers work well enough to process copious amounts of hard alcohol without giving us more than a massive hangover.
So, while we have a long way to go before we find an actual cure to CF (one that works for everyone and is just a one-time thing rather than three daily pills), we are getting very close to finding a cure. In some ways, Trikafta is a cure! Maybe it works better for some people than others. But, everyone on Trikafta still benefits from it, one way or another.
Thanks to this medication, I feel much more comfortable spreading my wings and getting more and more independent. I also feel much more comfortable starting college, pursing a higher paying job with more hours, and coming up with ambitious goals I never believed I'd ever have the ability to accomplish. Now, of course, I'm still very cautiously optimistic. I still don't have any expectations. However, as I've mentioned before, the science is there and it is promising. Other people's anecdotal experiences and stories are promising. The side effects I'm currently experiencing are promising, because they show that Trikafta is purging my body of mucus and making organs work that were never useful to me before. My energy levels during the day and night are also very promising and are the highlight of this medication so far.
So, while it is smart to be cautious and have no real expectations, I can't ignore the good things, especially since other people are noticing how upbeat and energetic I've been compared to where I was before. I'm only on day six. Science says I won't be completely acclimated to this medication for at least another five weeks, but I could continue to see improvement in my health for the next six months to several years. We don't really know. That's why I gave scientists permission to study my numbers without knowing my name or face. Sure, I'm still generally pessimistic and cynical about pretty much everything. But, my future no longer looks so dark and depressing. I might be as successful as my parents after all. I didn't think I could be as competitive and hard working as my parents. But now, the possibilities seem endless.
Well, that's assuming we (as a country) don't get dragged into an all-out nuclear and/or civil war within the near future. My current political research has me increasingly worried. The fact that I'm more likely to get incinerated by a nuke or witness another civil war break out on US soil, than suffer from lung failure before my 40th birthday, should be very worrying to for everyone. Politics for me went from being the most entertaining reality TV show besides Duck Dynasty, to the most terrifying and disturbing thing that has ever been filmed besides the shit you can watch on LiveLeak, now that I've fully accepted that I'll have to live with whatever gets the most votes for decades to come.
I'm not liking what I'm seeing so far, at all, whatsoever.
Day 7:
No sleep was had last night. I was severely bloated and constipated to the point that I was in too much pain and discomfort to sleep. I took another dose of laxatives every few hours as my stomach and intestines gurgled. I knew it was good that my abdomen was making noises since noises are associated with movement. However, the discomfort was pretty much unbearable.
Nothing I tried worked to alleviate the pain or discomfort. I took pretty much every gas, pain, and bowel obstruction medicine I had, chugged it down with apple juice, and then laid down under a heated blanket with a heat pack stuffed against my stomach. At about five in the morning, my grandma came into my bedroom to check on me before she left for work. When she saw that I hadn't gotten a lick of sleep and was curled up in a fetal position, sweating profusely from being in agony, she decided to call her work and see if she could remain on-call. Thankfully, they allowed her to stay home.
My grandma fed me two doses of laxatives in a giant glass of apple juice, and then headed to the store to get an even more potent laxative than what we had on hand, in case things still didn't move. Unfortunately, nothing moved. I managed to fall asleep and slept for a solid five hours. But, when I woke up again, I was still very sick and uncomfortable. So, reluctantly, I took that high powered laxative along with my Trikafta breakfast (which I only took two enzymes with this time), and if that still didn't work, I would need to go to the hospital.
Thankfully, about an hour or so after I took that final laxative, on top of the half gallon of laxative-laced apple juice I drank over the course of the night, things finally moved.
It wasn't a pleasant experience. It felt like my insides were being ripped out the whole time I was in the bathroom, and I could feel myself actually losing weight. Also, I was chugging down water like nothing else because I was so damn thirsty. I think I refilled my water glass about fifteen times. I don't think I've felt so sick since I had a stomach virus over a year ago. Ok, I wasn't as sick as I was when I had the virus, because I could still move, maintain body heat, and didn't vomit every five minutes. But, my laxative-induced illness was a close second. When it was finally over, the world was spinning, but at least I was feeling better.
Unfortunately, even after that, I'm still very full and bloated. I took yet another shot of the potent laxative not too long ago, and now it's just the waiting game.
I have to admit, I do feel pretty discouraged. I know this is just the continuation of a legendary expulsion of mucus from my whole body, and as my body (hopefully) runs out of mucus to purge, things will calm down. However, I'd be lying if I said I wasn't considering taking a break from Trikafta. I'm used to being sick, but what I'm currently going through is unlike anything I've ever gone through before, and nobody else besides others who are on Trikafta, can relate to the things I've been going through. Hell, no two people who are on Trikafta experience the same symptoms!
I don't even know how to put into words what it's like to simultaneously feel like a bear in hibernation, yet more wound up than a spider monkey addicted to lattes. I don't like how I can feel perfectly healthy and content one hour, but the next hour be shitting my brains out, to the point I'm asking God why He has forsaken me. I'm not gonna drive home tonight, even though I feel perfectly ok right now. I'm still going home with my mom, but I'll have to get my truck in a couple days when I (hopefully) don't feel like I'm at risk of passing out, vomiting, and/or shitting myself at the wheel during the course of the drive.
I don't like how I'm feeling right now. I don't like how thirsty I am, or how much fat I have to eat in one sitting just to take my damn medication. I don't like how every cough brings the foul taste of decay into my mouth. I don't like how I don't know how many enzymes I need, if I need to take them at all. And I won't be able to figure it out any other way except by logging how many I take per meal, and suffering the consequences of taking too many or too little enzymes each time. Either I'll be severely constipated, or I'll end up severely dehydrated, or perhaps both, until I finally figure out the right number of enzymes I need with which meals to not feel like I'm dying. There's so many things I don't like about life at the moment, but I think y'all get the point.
However, I keep reminding myself, over and over again, that what I'm going through now is very temporary and very worth it. I keep telling myself that thanks to this medication, within just a few short weeks or months, I'll have an entirely new body that actually does what it's supposed to do. I will get to feel what it's like to have the energy of a normal person for the first time ever, without having to deal with the purge. I will be able to work, travel, attend college, maintain a social life, and pursue my hobbies, all at the same exact time thanks to this new medication! I hopefully won't have to worry so much about catching everyone's colds, or canceling plans at the last minute due to illness or threat of illness. I might be able to truly enjoy the outdoors, without chewing my nails over the weather or lack of electricity for a few days. Hopefully, I'll be able to work full-time one day, doing something that I enjoy, and I'll live a long, productive life I can be proud of. For the first time ever, I feel like I can safely be ambitious, and do things I once believed I could never do long-term.
That's amazing! Considering where I've been, and the shit I have been forced to endure all my life, the fact that science now says I'll be able to escape what was once the inevitable just a few short years ago, is just incredible. Not only does science say that I can expect to live as long as my normal peers with minimal CF symptoms, but at the moment, the painful diarrhea and violent, productive coughing fits, are proof that the anatomy of my cells are changing quickly, the inflammation in my body is decreasing, and my body is beginning to shed the buildup of mucus that has caused me so many problems over the years.
Hopefully, things only improve from here, and within a few months or so, I won't even have to worry about CF getting in the way. Hopefully, I can just get on with life like everyone else. Just imagine the things I could do in a body that acts as though it wasn't even born any differently. Thank science for Trikafta. And Thank God for science!
But, for now, I'll be fixing up a concoction of Miralax and apple juice to swallow my Ibuprofen and Gas-X with, so I can hopefully sleep tonight. And, if that fails, I'll just chug down a couple capfulls of Pepto-Bismol's evil twin, and suffer yet another gastric exorcism at 5:00 in the morning! Oh man, I'm having so much fun with this!