The Cystic Fibrosis community said that Orkambi was a game changer, even though that medication only helped cells afflicted by Cystic Fibrosis function 5-10% better in people with CF.

While 5-10% seems like a small difference, it was enough to dramatically change the lives of thousands of people with Cystic Fibrosis, including me. Those who had lung functions of 40% suddenly had more than half of their lung function back, and many people with CF, including me, were able to gain some weight and have more energy. That was just from a drug that helped our cells process 5-10% more sodium than before. 

Then, several years later, a drug called Symdeko was announced, which did the same thing as Orkambi. But, instead of only helping cells function 5-10% better, Symdeko helped cells function 15-20% better! 

Unfortunately, I don’t think I really experienced any real results right away, unlike so many other people with CF who again witnessed dramatic improvement in their overall health, because I went on Symdeko right after I beat the second round of a Pseudomonas infection that almost held me back a grade in high school. However, I do think Symdeko was, at least partly, behind my 121% lung function score and 4.1 liter lung capacity over a year later. And, Symdeko only made my cells 20% better at processing sodium than they were before I was ever on Symdeko or Orkambi. 

But, as of a week ago, the FDA approved a new drug called Trikafta, which does the same thing as Symdeko and Orkambi, but instead of making my cells work 10-20% better, Trikafta will help my cells work 70% better! To put that into perspective, let’s say a CF patient without access to Orkambi, Symdeko, or Trikafta has cells that function at 0%, and a normal, healthy person without CF has cells that function at 100%. This means we are literally 30% away from discovering a cure to Cystic Fibrosis. Scientists have figured out how to alter DNA using pills, so now it's all about perfecting that pill. In fact, right now, the CF Foundation is fundraising money, with a goal of raising $500,000,000, to cure Cystic Fibrosis.

We're done with creating cute little stepping stones to make CF livable. We are well on our way to curing Cystic Fibrosis, making it the first ever curable genetic condition in the world! If we are able to cure CF using DNA-altering medication, imagine all of the other genetic conditions we can cure using similar methods! Right now, we are on the verge of figuring out something that will save millions, if not billions of lives in the future! People don't realize how big this is because they assume it's just a CF thing. It's not! If we figure out how to cure CF without replacing old chromosomes with new ones before a person is born (which is really, really sketchy and probably not ethical either), that will encourage the rest of medical science to cure other genetic diseases (and possibly even non-genetic diseases) in similar ways! 

In my lifetime alone (18.5 years), CF has gone from being a childhood death sentence, to something people can live with well into adulthood. Now, I'm pretty damn confident I'll make it to old age, and die of old age. I don't think CF is going to be the thing that puts me six feet under.

Not only does Trikafta prevent CF from progressing, it actually heals parts of the body that have been severely afflicted by CF. Everyone who has been on Trikafta through the trials so far, have gained a minimum of 14% of their lung function back in two weeks! Let me repeat that. A minimum of 14% in two weeks, and then that number continued to steadily increase over the following months for pretty much everyone who took Trikafta during the trials! Most people with CF permanently lose 2% of their lung function every year! Orkambi and Symdeko only gave 1-3 years of a person’s lung function back. The fact that Trikafta will give a minimum of 7 years of a person’s life back to them in two weeks, and then continue to give them even more of their lung function back over time, is just insane! I can’t even begin to comprehend that. It just doesn’t fit inside my mind at the moment. 

Unfortunately, Trikafta can’t reverse scarring, but it can reverse illness and greatly reduce inflammation. Scarring is only one of many things CF causes. If illness and inflammation can be reversed, there will be no more further scarring, and there is a possibility that the scars will slowly begin to fade. Trikafta is so powerful, that people have been literally risen from their deathbeds after taking the medication. People have been able to get off the lung transplant list. Many CF-related diseases such as arthritis and diabetes have been cured by Trikafta. People have experienced massive increases in lung function. And, most people prescribed Trikafta have been able to reduce or completely stop doing many of their treatments that were once crucial to their survival.

I haven’t been able to fully digest everything that Trikafta is capable of, or what it implies. I don’t think I will until I get on it, and experience for myself what Trikafta is capable of, which will likely be at the end of this month, or early in December. First, I have to wait for my insurance to approve Trikafta (which, I think they already have), because it costs almost $400,000 a year. Nobody who isn’t rich and famous can afford that. Hell, most people who are rich and famous probably can't afford that!

I also have to undergo a series of tests before I get on Trikafta, and will continue to be monitored and tested for months after I start taking it. Thankfully, I think most of the tests are blood work. I don’t think I have to do anything too invasive. Even if I did, I'd gladly get those tests done. Doctors want a baseline of stats before I get on Trikafta, and they also have to make sure my liver and kidneys can handle the detoxing period Trikafta will put me through. Orkambi and Symdeko made me really sick for the first two weeks I was on them, because they dislodged so much shit from my lungs, sinuses, and even my pancreas. I’m honestly afraid of what Trikafta will initially put me through, especially since I heard that doctors don’t let patients take the full dose of Trikafta until later because of how powerful it is. But, I know, in the end, it will all be worth it. Going on Trikafta will literally change the way my body functions. I will literally have a new body within two weeks of my first dose of that medication.

Of course, there are still risks involved. Trikafta could destroy my liver and kidneys if I'm not extremely careful. If I notice any signs of trouble, I'll have to call my doctors immediately and stop taking the medication. I'm also at risk of developing cataracts and/or losing a lot of my vision while taking Trikafta. Trikafta could also cause my skin to swell up in painful rashes. There's also a chance Trikafta will not work for me. There's no scientific reason for it not to. I do strongly qualify for it. But, I'm also a very strange case of CF, so I can't rule out the possibility that Trikafta will have little to no effect on my health. Also, Trikafta will make me severely allergic to grapefruit. I don't know why. I don't even think the doctors and scientists who developed Trikafta know why. But, everyone who was on Trikafta during the trials developed a strong allergy to grapefruit, that only went away if patients stopped taking Trikafta. That doesn't matter to me though. I absolutely despise grapefruit, and even if it was my favorite food in the world, I'd sacrifice it to get on Trikafta. 

Also, Trikafta is not a cure. I will still have Cystic Fibrosis. I will still take a lot of pills, and have to do some sort of physical treatments everyday. I will still be susceptible to illness. My CFTR chromosome will still be permanently screwed up. And, to be honest, I don’t know how effective Trikafta will be for me. I was way too healthy to get into the trials. While people with lung functions in the 80’s and 90’s were able to get into the trials, and have seen their lung function skyrocket into the 100’s and 110’s, I have a lung function in the 120’s and a lung capacity of 4.1 liters. There must be a point where my lung capacity and function will level off, simply because I don’t have enough space in my body to fit all that air. 

But, at least I will no longer have to live with the constant anxiety of the progression of my disease, because my disease will no longer be progressing. I can expect to live just as long as my peers without a shadow of a doubt. I also expect my CFRD and CFAA to disappear once I get on Trikafta. I’ll probably start gaining weight a lot quicker than ever before. And, while I don’t really expect it, there is a chance that my lung function will get even higher and more impressive.

I won’t know for sure what Trikafta will do to me until I actually start taking it. But the science has already been established through studies done on hundreds, if not thousands of people with CF. Even those who are on the healthier side of CF have seen some pretty dramatic improvements in their overall health. So, I know Trikafta will change my life for the better, and lift a lot of weight off my shoulders that I’ve been carrying since the day I was born. 

There’s a chance that I’ll be able to get off of enough treatments and medications to live without having to worry so much about fitting my treatments and medications into my daily life. I’ll be able to spend less time at home, and more time doing what I want to do. I’ll get sick less often, and may no longer be susceptible to Pseudomonas and MRSA infections, which means I’ll be able to go swimming at any pool I want again, and may even be able to own reptiles and fish as pets. I’ll have more energy to do what I love. I’ll be able to work away from home full-time, doing basically anything I want. I’ll be able to attend college in person, and not worry about falling behind due to illness. I won’t feel like a burden on everyone else, like I’ve felt for so long. I won’t be in pain anymore. I won’t be so sick anymore. I won’t feel as weak so often anymore. I won’t have to rely on hours-long naps and/or super strong energy drinks to stay awake and functional. I won’t be afraid of my future anymore. 

This new pill will literally change my whole life, physically, mentally, spiritually, etc. 

I think I can finally go forward into my future without worrying about the progression of my disease taking things away from me, because my disease will no longer be progressing into a greater problem. Instead, it will begin to progress in a different, much better direction. No longer will CF be chipping away at my body, slowly but surely (and somehow rapidly at the same time), taking away my ability to do things. Not only will the progression of CF be stopped in its tracks, but much of it will be reversed! Words cannot even begin to describe how exhilarating, yet relieving, that is for me. Even though I’ll still have to take some medication, and likely do some treatments, I won’t be on the losing end anymore. Trikafta isn’t a cure, but it is a massive, massive step in the right direction. We’re just 30% away from finding a cure!

I think I can now say, with confidence, that I beat Cystic Fibrosis. 

Well, that’s not entirely accurate. I really didn’t do shit, other than sign a few papers permitting doctors to track my health over the years for scientific purposes. Thanks to doctors and scientists who have been working on finding adequate treatments, and eventually a cure to Cystic Fibrosis for decades, I have CF beat. Thanks to my parents, grandparents, distant relatives, friends, and every random stranger who has donated, volunteered, supported, and pressed for more research to be done, I have CF beat. 

But, most importantly, I think I’ve finally come to terms with God. Now, I’m not saying I’ve surrendered to God. I still have quite the rebellious spirit, and I still haven’t gained access to the medication yet, so I still have a lot of health issues that are bothering me. But, I do not believe the FDA approving Trikafta so quickly and suddenly, breaking their record for the fastest they’ve ever approved any medication (and they’ve reviewed and approved a lot of medications over the years), catching literally everyone off-guard, not even a week after I begged God to cure me, was just a coincidence. Again, I’m not saying I’ve finally come to heel, but I think I’m done asking stupid questions and being openly hostile towards God. Sure, I’ll probably still have my moments, but I really can’t deny the existence of God anymore. 

There is a reason why Trikafta has been nicknamed “The Miracle Drug”.