Look at me now!

It's been one year and one week since I've been in the hospital. For me, that's huge.
I don't know when the last time I was out of the hospital for more than a year, but it's been a while. In recent memory (since at least freshman year of high school, ~8 years ago), I've gone into the hospital at least once every year, and oftentimes twice a year. Being out of the hospital for more than a year, then, is a really big deal.

The best part? I did it almost all by myself. I didn't have any IV antibiotics, I was on oral antibiotics once, and I was only on Trikafta---the new CF modulator---since November. I've worked for this accomplishment and for maybe the first time ever I successfully fulfilled a New Year's resolution. And I don't plan on stopping.

Trikafta was announced and introduced in November (if my memory and Facebook posts don't fail me). I started the medicine on November 22, 2019, and I have noticed a huge difference. I cough so rarely and when I do it's less productive. If it is productive, my mucus is clear. I haven't seen yellow mucus in two months. That's weird! And, most surprisingly to me, I have more energy than I've ever had. I've been dancing and playing racquetball and on my feet noticeably more. It's such an incredible medicine and I can't ignore its effects. My efforts to stay active and healthy, paired with Trikafta, have paid off. I'm getting healthier. That's something I guess I never thought would happen. You see, cystic fibrosis is a chronic, progressive disease, which means that it gets worse over time. The older you get, the less healthy your lungs get. Trikafta has flipped that switch. (Not completely. I want to be clear that I do still have CF and I have to take all my medicines and do all my treatments still. The progression has slowed significantly and technically has reversed ever so slightly in terms of my lung functions, but the disease itself is still there and needs to be treated and will still get worse over time. That time, however, will be longer than before.)

I'm graduating college in May. I'm getting married in June. My life is just beginning and this medicine has come into my life to support my plans. My goal to stay out of the hospital for a year was inspired by my graduation and marriage and job plans; I didn't know of Trikafta until it was announced in November. I wanted to be healthy for myself, for Noelle, and for my friends and family. That's happening and I couldn't be more excited. In some aspects, life is actually getting easier which is so, so weird.

I'm a little nervous, though, because with this feeling of ease and improvement comes a looming temptation of complacency. I've cut down from three vest treatments a day to just two. I haven't been doing my tube feedings as much (part of that is being at home for winter break but part of it is still my complacency). A year ago I was more motivated than ever to take on my treatments and feedings and medicine fully to be the healthiest I can be. I've started to become healthier, but if I don't maintain that work ethic I won't be the healthiest. Life has gotten better, my CF isn't as burdensome, but it's still there. I can't settle for what I have but I should strive for what I want, what I can be and what I can do. This year is going to be huge for me and if I work hard and stay disciplined, then this really will be only the beginning.