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.