After the new medication was announced, I was very cautiously optimistic. People hyped up the medication to be some sort of miracle drug, much like how they hyped up similar medications, Symdeko and Orkambi, both of which I had taken, and neither of which had a significant impact on my health. I didn't expect Trikafta to live up to the hype. After all, it was made out of the same stuff as Symdeko was, with just one more ingredient added into the morning dose of the medication.
I don't know where scientists came up with the names of the medications. But, the "Tri" in Trikafta was clearly a play on the three medications mixed into one tablet (or, in the morning dose's case, two identical orange tablets). On various online CF forums, people were jokingly equating Trikafta to the Christian Trinity. As blasphemous as some people might see it, I actually liked that comparison, though I still didn't buy into the hype. Maybe Trikafta was the metaphorical savior for CF. Maybe it was the medication that saved 90% of the CF population from an inevitable premature death by drowning. However, I didn't count on it. In my eyes, it was just another overhyped medication that did basically the same shit as Orkambi and Symdeko, though was a little better at its job. I did not expect it to do anything profound to me.
It took a couple of months to get my insurance to pay for the medication, which cost a whopping $315,000 a year! During those two months, I researched as much as I could regarding Trikafta. I joined online forums for those starting the medication to discuss what it was doing to them. I read what the FDA had to say about it. I learned how Trikafta worked and what it would likely do to my body. The more I researched, the less I believed Trikafta was just another one of its cousins. People were describing complete turn-arounds in their health. They were talking about their bodies purging out mucus for weeks on end, and getting energy they never had before. People were literally calling Trikafta a "miracle drug" and the "cure" to Cystic Fibrosis.
Of course, there were a handful of people who didn't experience the same dramatic effects others were describing, so I decided to err on the side of caution. Instead of letting myself get all wound up on Trikafta success stories, I convinced myself it wouldn't have a very dramatic effect on me. However, I still had a lot of "what if" questions surrounding the medication. What if it actually worked for me like it worked for so many others? What if I had to endure some pretty unpleasant side effects? What if Trikafta lived up to the hype? What if, what if, what if.
Pretty soon, my cautious optimism turned into impending doom. I was overwhelmed with anxiety at just the mere thought of taking Trikafta. I wasn't sure if I could muster up the courage to actually take it when I got it. If it turned out to have some dramatic effects on my body, how fucked was I? Would I survive to live the rest of my long life like my peers who didn't have CF? Or, would the purge prove to be too much for my body to handle, forcing me to get off Trikafta or die of liver failure? I wouldn't know until I took the medication. When I called the doctors, they admitted that I was entering some very uncharted territory. They'd monitor me closely, and gave me a mile-long list of things to watch out for. But, beyond that, they were just as clueless as I was.
It wasn't very reassuring to be told by old people with MD's and PhD's that I, an eighteen year old who did really dumb shit on a regular basis, was just as smart as they were when it came to Trikafta. Regardless, even though I went from cautiously optimistic to downright terrified, I was gonna saddle up anyway and take the medication, because my life literally depended on it.
As the days to my first dose of Trikafta drew closer, I became increasingly distraught. I wore a visible path in the carpet at home from pacing anxiously, pondering every possible worst and best case scenario I could come up with. Over the holidays, while I was full to the brim with the Christmas spirit, my anxiety attacked me at night when I was finally alone and the Christmas cheer had died down for the day. My attempts to explain my terror to relatives didn't really garner me much sympathy. Everyone in my family was only excited about all the possible benefits of the medication, but didn't give the negative side effects too much thought. Most of them thought I was just overreacting, and more or less told me to stop thinking about the worst case scenarios and just revel in the fact that I'd be feeling much better soon.
Obviously, that didn't help diminish my anxiety one bit. If anything, it made it worse. I felt very alone, especially when I reached out to the CF community online and was met with pretty much the same shit I got from my overly optimistic relatives. Very few people empathized with my growing fear of the medication, further validating to me that I was truly a wuss and was probably letting my anxiety get away from me. I ended up crying myself to sleep most nights, especially the last several nights before the day I finally had my hands on the medication, because I was so fucking scared but had nobody to turn to.
The only one I could really turn to during those horrible nights was God. By now, I'd fully accepted that He existed. I couldn't deny His existence anymore. Not after all we've been through together. Every night, I prayed to God that everything would go smoothly, and also made an effort to apologize for being so stubborn and angry towards Him. I felt guilty for the way I treated God in the past, and asked for forgiveness which I knew He gave freely even though I didn't deserve any of His love and mercy. However, despite my fears and my confession of faith, I still wasn't ready to surrender myself to God.
For me, my stubborn refusal to trust in God with all of my heart was not rooted in disbelief anymore. Atheism no longer contended with Theism for me. This time, it was fear that prevented me from trusting God completely and unconditionally. I was terrified of trusting God. After all, what if He let me down? What if things didn't go the way doctors and scientists envisioned they would go? What if Trikafta was just another false hope? How could I trust God when I was engulfed and drowning in uncertainty? How could I trust everything would be ok, and I would be healed, when for my entire life, my health was deteriorating more than it was healing?
When time for me to take my first dose of Trikafta finally came, I slowly and shakily got into the front passenger seat of my grandma Debbie's car. I'd been staying with her over the holidays, and she agreed to watch over me as I endured my first week of Trikafta. She knew I was afraid, but she didn't have much to say to me that was reassuring or helpful. She wasn't being intentionally callous. She just didn't fully understand why I was so nervous.
I could understand her position, which was similar to everyone else's positions. Everyone who knew me was just ecstatic that Trikafta would potentially allow me to live a much longer, healthier life. However, they were all on the outside looking in. Everyone I reached out to in real life had normal, healthy bodies. They didn't know what it was like to be born into inescapable suffering like I had. They didn't truly know what it felt like to have CF. On the flip side, I didn't know what it was like to have a normal, healthy body.
I was born into suffering, and for my entire life up until Trikafta was announced, doctors, scientists, news articles, blogs, books, my own friends and family, all told me I was never gonna get better. My condition would continue to exponentially deteriorate over time. I'd have to rely on disability and a part-time job at home to survive. I'd be dead before I reached the age of forty five. And, as I grew up and things only got worse in the long run, I fully believed and even accepted the fact that I would not live as long as my peers or outlive many of my older relatives.
But, when Trikafta came along, everything just took a complete 180, and I wasn't sure how to cope with such a huge change. I shakily took my first dose as my grandparents stared me down. I really didn't know what to expect that day. Would I feel any different? Would Trikafta actually have a positive impact on me? Would it live up to the hype? Those questions and many more reeled in my mind as I counted down the minutes since I took the medication.
Trikafta had an almost immediate effect on my health. Within two hours of me taking the first dose, I was coughing stuff up. Within eight hours, my sinuses were draining. And, within a few days, other places were purging mucus as well. The side-effects weren't exactly fun to endure, but I hesitated to call them "bad". The side-effects were promising signs that the medication was doing what it was supposed to be doing.
My body was getting rid of most of the mucus that it had comfortably accumulated over the years, and as a result, I began to feel way better. I didn't know just how severe CF actually was until the veil was lifted. Sure, throughout my life, my numbers had always been very impressive considering what I was born with. But, it turns out, I was still sick as a dog when compared to those without CF.
My energy levels on Trikafta breached the edges of the universe. I'd say they shot through the roof, but that would be a great understatement. I went from feeling tired all of the time and relying on multiple daily energy drinks and naps to get me through most days, to being so full of energy that I could do everything I wanted to do in one day, and then some without any naps or energy drinks!
Also, about a week after I took my first dose of Trikafta, I went for a run around my neighborhood. Well, I left my house intending to just go on a walk, but I was feeling very frisky, and that's how I ended up sprinting about seven consecutive blocks before my body finally forced me to slow down. However, I didn't stop because my lungs were burning for air and my heart felt like it was about to explode. My heart and lungs were just fine. It was my legs that were begging for a break. They were burning and numb, while my lungs were breathing normally, and my heart wasn't pumping nearly as hard as it used to whenever I worked out.
Not only that, but as I sat resting on a bench facing a small, icy pond surrounded by tall, pondersoa pine trees, I noticed I was picking up whiffs of a scent I couldn't quite pinpoint at first. Soon, I figured out that I was smelling the sweet, earthy scent of the ponderosa trees. I also caught whiffs of other smells I hadn't noticed before. I caught the faint scent of a distant BBQ, the scent of stagnant water being carried off the icy pond by the breeze, and a few other smells I still haven't figured out what they were. It was all too much for me to handle, and I broke down in tears. For all my life, I'd been deprived of so much, I just didn't know it until I was no longer deprived of those things.
Not only could I run with ease for the first time in my life, without needing caffeine or an extra motivator (such as paintball) to get me moving, but I could actually smell again. I didn't need to be directly under the pine trees on a windy day to smell them. I didn't need to be within a few yards of a BBQ to smell it. I didn't need to hover above the water to smell it. The scents came to me now. I didn't realize how much CF negatively impacted my sense of smell. I knew I had a weak sense of smell. But, I didn't know just how weak it was, until my sinuses cleared out and I began to smell things I've never smelled them before.
And, on top of that, as I breathed, my breaths were clear and deep. I no longer huffed and growled like a tiger whenever I breathed during or after any cardio activity. I no longer choked and gasped as thick sputum filled my windpipe. Breathing was incredibly easy compared to the effort it took just a short week before. I didn't realize just how hard it really was for me to breathe, especially considering how high my lung functions were, until it was no longer so difficult. Breathing became effortless on the new medication. I'd been bound up by the suffocating chains of Cystic Fibrosis, but didn't even know I was being suffocated until I was no longer drowning.
I was shocked. I didn't know how badly CF had affected me until Trikafta came along and almost completely defanged it, allowing me to breathe easily and completely. I was no longer facing a future of worsening symptoms, or the prospect of dying prematurely due to some CF-related complication. I was so much healthier than I ever was before, and the world had just opened up to me. I had been wrapped in chains my entire life, but I didn't really know it until Trikafta removed those chains from me.
Now that I was free, I was left with grieving the last eighteen years of my life that I spent sick and fighting an uphill battle. I was left with trying to figure out how to take on the rest of my long, promising future ahead, even though I felt grossly unprepared. I spent my entire childhood expecting to die decades before my peers died, so I wasn't sure how to cope with life now that I was no longer at such a high risk of dying early.
From that day on, I was very emotionally sensitive. The emotional walls I'd built up over the years to maintain a stoic appearance were no match for the effects Trikafta had on me. As a result, I avoided talking about Trikafta as much as possible. When Mom took me out to dinner, I tried to avoid discussing the medication as much as possible because I didn't want to cry in the middle of a busy restaurant. When my grandpa Lyle called me to ask how I was doing, I didn't say much about Trikafta. But, a few hours later, as I wiped away tears, I sent him a lengthy text describing just how amazing the new medication was. When my dad called to ask how things were going, and discuss lunch plans, I finished our short conversation sobbing.
But, what really hit me in the feels was any discussion that had anything do with my faith. God was scribbled all over Trikafta. Dr. Francis Collins, the scientist that was part of the team that discovered the gene responsible for Cystic Fibrosis way back in 1989, and spurred on medical research to figure out the best ways to correct the faulty gene without crossing ethical lines or screwing up other things, was (and is) a devout Christian who was never shy about his faith. Also, the FDA approved Trikafta in record time, catching even the most up-to-date people completely off-guard, barely even two hours after I had sat in my car hurling every creative, vulgar insult I knew at God, because I was suffering so much from CF-related complications. And, Trikafta was ridiculously effective. The things I was bitching at God for letting me endure were no longer problems that I had to worry about. As far as I could tell, I was no longer diabetic or suffering from joint problems, and cold weather didn't bother me as much as it once did.
God truly heard my cry for help, and answered my prayer in a way I was definitely not expecting. I never expected God to fix my genetic issues. I never expected my health to get any better in the long run. But, God apparently had other plans. Sure, I still have Cystic Fibrosis and I will still have my bad days. But, CF no longer runs the show. It is no longer riding on my shoulders, dictating what I can and cannot do. It is no longer something I constantly have to consider every time I want to do something. All I really have to do now, is take the medication religiously, keep a few enzyme pills on hand to take with fatty meals, and that's it!
Physical treatments? Don't need them. Sure, I still need to stay physically active, but do I need to spend two hours of my day wearing my afflovest? No. Do I need to sit in a chair for a half hour everyday breathing in medication? No. In fact, I quit nebulized medication cold turkey because it was hurting me more than helping. Do I still need medications? Of course! But I don't need nearly as many as I once did. I went from taking between 30-50 pills a day to taking 10 pills a day, including the Trikafta. Why? Because my organs are working almost normally thanks to Trikafta.
I can digest most of my own food using my own pancreas. I can eat things like sugar and fat without suffering severe indigestion. On the flip side of that, I can't eat an entire bag of gummy bears without feeling a little queasy afterwards, which is still a good sign. It means I'm digesting sugar and it's giving me a sugar high. I am gaining weight, even though I don't have much of an appetite. Now, half of my jeans don't fit me, and my pelvic bones no longer stick out. My resting heart rate has slowed down. It doesn't take me multiple attempts to satisfy a yawn. I can laugh without wheezing and coughing. My eyes no longer burn from the salt when I cry. I no longer need to drink multiple energy drinks a day to stay awake and functional. I no longer need to bring soap right up to my nose to smell it.
Trikafta took away the chronic pain that had plagued me for my whole life, especially over the few years before I started taking the medication. The chronic pain was literally crippling. The joint pain was one thing. Yes, it was terrible at times, especially during the last several months before I started taking Trikafta. But, for the most part, I learned to live with it. I refused to let it cripple me, and did my best to walk normally even when the pain was searing, all because I didn't want to end up with a visible disability.
However, my menstrual cycles were a very different story. They were impossible for me to ignore, and even harder for me to predict. I knew the pain from my menstrual cramps couldn't possibly be normal, because they were so bad I'd be curled up in a tight ball with tears streaming down my cheeks. Menstrual cramps are not supposed to be anywhere near that bad.
I was afraid to talk about it. Not only was my pain often dismissed by my mom, who was the only person I was willing to talk to about that, but I feared doctors would react similarly to how my mom did. I did briefly bring it up with one doctor, who suggested that if it was not CF related, then I might have Endometriosis, which was just about as incurable as CF unless I opted to get it surgically fixed. It turns out, I did not have Endometriosis. My menstrual problems were entirely CF's fault.
Amazingly, Trikafta took away both my joint pain and crippling menstrual cramps. Strong weather fronts no longer crippled me. In fact, if it didn't get so damn windy ahead of those fronts, I would've never known they were even coming through. Also, my crippling menstrual cramps went away. I still felt them, but they were hardly noticeable compared to what I was used to. It stunned me to find out that the menstrual cramps I experienced prior to taking Trikafta, were just as painful as actual childbirth. Yet, after the initial shock from the pain, I somehow managed to get up and resume life. Do with that what you will.
The majority of my pain and suffering was gone, however it was far from forgotten. I'd grown so used to living with CF, that a life without its influence was completely foreign to me. As much as I despised such a godforsaken condition, I missed CF in a way. I learned a lot of valuable life lessons because of CF, that I otherwise would not have learned. CF taught me how to endure excruciating pain with a genuine smile. CF forced me to stay physically active so I could stay as healthy as possible. Even though CF attracted a lot of bullies, it attracted even more supporters and friends later on in my life. CF forced me to confront my mortality, and come to terms with the fact that, unless a miracle happened, I'd die very young and in a very horrible way.
As crazy as it sounds, I found peace and security in knowing when and how I'd likely die. Even when I was an atheist, I still felt comforted by my premature death. Why? Well, CF was often a tremendous source of unbearable pain for me. I didn't want to live to be sixty or seventy if I was bound to struggle as much as I was for my entire life. I became comfortable with having only twenty more years to live by the time I reached eighteen, because while I'd spend those years suffering horribly, at least I was already halfway through it by the time I reached adulthood. Don't get me wrong. I never was suicidal. However, if I was going to suffer from crippling pain and traumatic lung infections my entire life, I didn't want to endure sixty to seventy years of hell on earth.
If I was going to live to be an old lady, I wanted to live the bulk of my life free of the things CF did to me. However, I never believed that was possible. I never thought that, within my lifetime, an effective medication would come out, that would make it possible to live a long life with minimal CF symptoms. Then, scientists released Trikafta to the CF world, and suddenly, the far-fetched wish of growing old without CF running the show became the reality.
Trikafta truly was from God. Sure, scientists developed it. I get that. But, guess Who created science, and guess Who created those scientists and gave them the intelligence to come up with these medications? God did. So, while I am so very thankful to the scientists and doctors that developed and will continue to develop groundbreaking medications for Cystic Fibrosis, as well as other genetic conditions, I am also very thankful to God for giving them the ability to invent these things in the first place. God doesn't replace the scientists. But, the scientists don't replace God either.
