May 9, 2020
It is safe to say this letter might be a little different this year.
Hello everyone- I hope you are all doing well- healthy and as happy as you can be. We’ll discuss our… situation later. For now, it is time for the Y E A R L Y R E C A P. Ultimately, this has been a relatively great year for me, in CF terms. After being in hospital for 1 month and out of school for 4 months last year, this school year, I have not been admitted to the hospital nor undergone any major lung procedures. Ultimately, a big win! I’ve also been reasonably healthy aside from some minor strep, earlier this year?- time is a blur but I know it was at least 5 BQE (1). But for the most part, my health has been ideal- and it shows in the numbers. Recent lung function tests calculate a +24% increase in lung function, with my body breathing clearer, deeper, and more able to walk up 2 flights of stairs to my homeroom (when I was in school). (But even with 24% increase I still have lung function less than 50%- that’s like I’m working with one lung! Yikes!)
This monumental improvement is not without cause, though. If you are not already acquainted, allow me to introduce my new friend Trikafta. This would not have been the first time I’ve mentioned this drug- not by name at least- but now it is out, FDA- approved, and used by me and 90% of CF community (That means 10% of people with CF still have no drug to help them! And we can't give up "until it's done", until everyone has hope). In previous letters, I have referred to a “triple-combo drug- “a treatment that utilizes three different medicines to have a lasting positive effect on the lungs, on my proteins, and on CF in general”. It’s immensely simple- I get sent little foil packs, filled with colorful pills with certain dates on it- it is referred to as The Pill in my iPhone alarm app- and I take them with food. That’s it. To be fair, I am still required to do all of my other treatments, pills, IVs, and nebulizers, but this slight addition is a welcome one, and I greatly attribute it to my current health. To think that this tiny foil pack of pills, created through millions and millions of dollars in research and donations from donors, could have such a lasting effect.
Wild, huh? (2) But in seriousness, it is the donations you give, that make things like this possible. Thank you! Now, I must address the elephant in the room. I’m sure we all have discovered more about ourselves, about our family, and in my case, about how much I talk to people and miss seeing them in person. My mother has moved from incessantly puzzling and crafting to incessantly, working for her job; my sister is often found at the counter, charcoaling various shoes, fabrics and books for her online college art class; I can either be found not doing dishes, playing video games, playing saxophone or singing in my new sound studio I built in my closet or generally avoiding responsibilities; and my father has turned our dining room into a personal studio apartment where he works, naps on the couch, and watches videos, about stocks or something.
Most certainly a deep dive into our respective psyches.
I hope the same can be said for you all- that you’re staying home and safe, not tearing each other’s hair out, nor being lonely. I hope everyone is stable, and as content as you can be. With this time, many things have changed. While the CF Walk will not occur in person, it will occur virtually on March 14.
I greatly appreciate each and every one of your thoughts, prayers, kind words, and thoughtful cards. They continue, and always will, mean the world to me. If you’re not in a position to donate, that is ok. And I still adore and cherish the support you give me, nonetheless. Give what you are comfortable with, what you are able. If you aren’t able to donate? That’s ok. If your large donation becomes a medium donation this year? That’s ok. If your small donation stays a small donation? That’s ok too. This is a difficult time- I understand that. As per CF Foundation orders, I haven’t left my property in 8 Weeks, and it’s a little rough. Especially since I’m not sure if others go back to “normal” activities if I’ll even be allowed since I’m at high risk. I encourage you to donate what you’re comfortable with- the triumph of Trikafta was an achievement created by people like you, donors and people who care, who now see actual results in my lung improvement. If it weren’t for Trikavta I don’t think I’d be as healthy throughout this pandemic.
People like you give me strength. The Great Strides in CF research and drugs give me hope, and they give me the tools I need to keep fighting, keep Striding, keep working, keep writing, and bring us ever step closer to a cure.
That strength? The hope and need to keep fighting on?
I think we all could use that right now.
1 BQE: Before Quarantine Era; as opposed to ACE, After Quarantine Era. Dated in weeks.
2 We have reached the PBS “Viewers Like You” portion of our programming.
3 Since 1 BQE for those playing along.