Note: May or may not be memoir material. For now, this is just a blog. 

It’s difficult for me to believe that I’ve been on this groundbreaking, life changing (and saving) medication called Trikafta for nearly a year. Time has just flown by I guess. However, in these short ten months, so much has changed, and continue to change. Just when I think my body has finally fully adjusted to the medication, something new and unexpected happens. However, for the most part, these new and unexpected changes have been nothing but good news. 

The latest new and unexpected changes have been my growth and appetite. Up until recently, I didn’t really have much of an appetite. Thankfully, I was still gaining and maintaining my weight despite not usually eating more than one meal per day. 

However, about a week after I returned to Colorado from Utah (where I spent the summer), it was like a switch was flipped. I was absolutely starving one morning! I was also somewhat achy, which frightened me at first because I was afraid my joints would start to swell and hurt like they did prior to Trikafta. However, the pain I felt in my knees and elbows was never severe enough to cause me to limp or even slow me down. Also, I was extremely hungry all the time, which was actually quite a blessing. Mom wasn’t sure what to do with our leftover food in the pantry and chest freezer when we left for Washington. Well, all but one tote bag of food was gone by the morning we left for Washington, thanks to me and my massive appetite. 

When I got to Washington and I unpacked some clothes I’d packed just before leaving for Utah, I noticed I could barely fit into many of the clothes I used to wear all the time. Some of my hoodies and T shirts fit snugly around my body, and many of my jeans, PJ pants, and sweatpants barely fit or didn’t fit at all. Either they were too tight, too short, or both! Also, the skinny jeans that once looked like regular bootcut jeans on my scrawny chicken legs, looked like skinny jeans on my now not-so-scrawny legs. However, I gave those away along with my other ill-fitting clothes because I didn’t like the feeling or look of the skinny jeans on my legs. 

I honestly didn’t think too much of it until a few days later when Mom noticed the box of clothes labeled “giveaway”. She didn’t believe me at first when I told her those clothes no longer fit me. After all, she could fit into most of those clothes just fine. How couldn’t I fit in them? I finally had to show her that they didn’t fit me anymore, and my mom stared at me with amazement when she saw just how much I’d grown. Not only that, but when I stood shoulder-to-shoulder with her in front of the bathroom mirror, I was (and am) literally a head taller than her. And, when I stepped on the scale, the thing said I weighed 142 pounds (with a T shirt and jeans on, so I probably weigh closer to 140 pounds, but still)! 

After that, I retreated to my bedroom to meditate on just how much I’ve grown, and to cry a few tears of astonishment. Apparently, I’m not done growing. I’m not sure why I’ve suddenly started to grow again, especially since I “stopped” growing almost two years ago. However, my theory is that now that I’m getting the extra nutrients I need after being deprived of extra nutrients my whole life, my body decided it wasn’t done growing yet. Or, perhaps it has something to do with my genetics. Perhaps I'm just a "late bloomer". Or, maybe it's all of the above. I’m still achy and eating everything in sight, so I’m not sure how big I’ll get. But, at this point, I’m willing to bet I’m about five feet and seven inches tall, and somewhere around 140 pounds. 

As you probably guessed by now, I don’t look anything like the chicken-legged, greyhound-torsoed thing I used to resemble. I can’t see my ribs or my abs anymore. My arms no longer look like spaghetti noodles. My legs no longer look like twigs. My fingers and toes aren’t clubbed like they used to be. My jawline isn’t so pronounced. My eyes aren’t so dark and sunken. And, I actually have a butt for the first time in my life. 

I’m also beginning to get some real muscle (even though I no longer can see my abs, which is a good thing), especially since I’ve been moving around so much lately. Sadly, I’m not ripped. But, I am much stronger and have much more stamina than I used to. I have no trouble lifting multiple boxes of books at once and running them up or downstairs, or carrying large pieces of unassembled furniture in their boxes on my own, or pushing/pulling the completely full trash can, recycling bin, or yard waste can up and down my extremely steep driveway. I can also sprint up and down that driveway multiple times without getting out of breath. 

If I tried any of this a year ago, I would’ve seriously injured myself, or been completely unable to complete the task, all while coughing, wheezing, and snorting like a moose in a wildfire. Yet, today, thanks to Trikafta, I can carry lots of weight rather easily, and breathe without issue. I’m not sure how much weight I can carry, but if I had to guess, I can probably lift close to 90 pounds without too much trouble, which is just incredible to me. 

As far as the breathing goes, my lung function continues to rise even though I no longer do any breathing treatments. My vest, nebulizers, and inhalers are currently sitting in storage collecting dust. Of course, if I get sick badly enough, I’ll immediately get back to my strict routine of breathing treatments. But, right now, my FEV1 lung function (the important one) hovers around 125-130%, which is a record for me (for reference, 100% is baseline average for a person my age and size without CF. Anything above 100% is above average, anything below 100% is below average. My PFTs used to be between 90-100%, occasionally getting up to 110% on my best days). My lung capacity has also increased, likely because I don't have nearly as much mucus built up in my freakishly huge lungs like I did before. I’m sure it’s even higher now. 

It certainly feels strange to be off my breathing treatments completely after relying on them to stay alive for my entire childhood and through most of my first year as a legal adult. A part of me still instinctively goes to the refrigerator every morning in search of my Pulmozyme and Saline, however I quickly remember that I no longer need those things, and instead turn my attention to food. I do have a stockpile of those nebulized medications in the fridge in case something happens that requires me to restart my breathing treatments, but for now, I don’t need them. Sometimes, I question if getting off those treatments was the right thing to do, and I have a nagging thought in the back of my head about the other shoe dropping. That nagging thought always says something along the lines of, “If you just resume your treatments, you’ll stay healthy forever. Otherwise, if you get sick, there’s no one else to blame but yourself, and you should feel really bad about it.” 

It’s a terrible little thought to wake up to every morning, but I do my best to shut it out and ignore it. After all, I’ve been on Trikafta for ten months now, and within these ten months, I’ve only gotten a cold which lasted for three days before going away, and I barely even noticed I had it. Up until I got on Trikafta, I never got over a cold that quickly. In fact, common colds tended to morph into something worse in my lungs and sinuses, which took weeks, if not months or even years to fully recover from. 

Of course, I’m not completely cured. I still take about twenty-five pills per day (including Trikafta), and it turns out I still can’t digest certain things like fast food, food made with lots of spices and fatty ingredients like peanuts or cream, and most junk food (although my diet has significantly expanded thanks to Trikafta). I guess that's probably because my pancreas has been permanently damaged by CF. But, at least I can drink whole milk again and am no longer diabetic.

I’m also extremely wary of the ‘rona, and treat it as if I’d certainly end up in the hospital if I get covid before I get vaccinated for it, even though people with CF seem to actually have better luck with covid than the average person. But, my quality of life is lightyears beyond where it once was, and there are no words in this universe or beyond to explain just how blessed I am to be where I am today.