I'm Back

My little feet are exhausted and I'll tell you why!
1. I've been running.
Your eyes are not deceiving you! I finished up my three-week round of IV antibiotics on Monday, and my home care nurse came that day to deaccess my port (this means she removed the needle, but the port itself will remain under my skin for the next time I get sick). Later that night, I went on my first run since the winter. I won't lie and say I went very fast, but I did go far - 40 minutes worth of jogging/walking! My lungs were hurting, as were my legs, but at one point during an inspirational song I honestly almost cried out of happiness. Kinda lame, I know, but I just felt so proud of myself. It's been scary to see my health decline over the past year, so choosing to fight for my life has renewed my sense of purpose in the world. I've gone on two runs since the first, and I think they're already starting to get easier.

2. Class is back in session.
I haven't stopped taking classes since I first moved to Ann Arbor in the fall. Although the spring term ended two weeks ago, I had to take two "Incompletes" and I am still making up assignments. But I think Zoloft (my anxiety drug) has started to work, because I haven't yet had any panic attacks about catching up; fingers crossed that it stays that way! Summer term started last week, and I'm really happy about my decision to drop one of the classes I was going to take. Just having my Introduction to Literature class on Tuesdays and Thursdays is giving me a lot of time to do extra treatments and rest, so hopefully my lungs will get back to where they need to be within the next few months.

3. I went back to work.
Tonight was my first shift back at the coffee shop since I got sick, and I was ridiculously nervous to close by myself. I was only on my second week of the job when I had to go to the hospital, so I was unsure about my ability to remember all of the drinks. It ended up going really smoothly, and I found a little surprise in the tip jar at the end of the night. :)

My lungs have been pretty junky, these post-IV days . . . I'm having trouble going to sleep and staying asleep because I'm coughing more than I usually do. Additionally, I'm waking up super early with tons of thick mucus and chest pains, which isn't the most fun. I had a clinic appointment yesterday which my mom was able to come up for, and my lung functions weren't what I wanted them to be: only 63%. That number was a bit disheartening to see after JUST having gotten out of the hospital, but it just goes to show how sick I was in the first place. I feel really dumb for waiting so long to get treatment, but it was an awful time for me to be sick and I was hoping to just get over it. Unfortunately I set myself back pretty far, so it'll take a while to regain that lung function. But that's just even more motivation for me to stick with my running! I love this life and I want more of it.

Dr. Simon said that I can start taking Orkambi! He estimated that it will take 6-8 weeks for insurance companies to figure out how much of it they're going to cover, which better be 100%, because the drug costs $250,000 a year. I can't wait for pharmacies to start stocking it so I can see if it does my lungs any good.

Here's my most recent vlog - my mom and I took the camera to the CF clinic. Subscribe, if you'd like!

Best Day EVER!

I've been in a funk - a very funky funk. But today, the first genetic therapy drug for my mutation of cystic fibrosis was approved, and I think I've broken free.

Never before have I experienced such nauseating, debilitating anxiety as I have these past two weeks. I cannot name the root of my nerves, and believe me, I wish I could. It feels impossible to fix yourself when you don't know why you're broken. But today, I felt as if I was slapped in the face by the mane of a unicorn made out of gummy bears. 

Guys . . . Orkambi is here.

We'll skip over the complicated scientific explanation of what Orkambi will do for roughly 8,500 Americans (those with the double delta F508 mutation who are over the age of 12) and get right to the good stuff. In clinical trials, patients taking Orkambi gained 3% lung function over time. This may not seem like a lot, but it is important to understand that cystic fibrosis is a progressive disease. This means that it only gets worse. Any improvement at all is, quite literally, a contradiction of the disease itself! And while some patients did not see any lung improvement, they saw a significantly slower decline. On top of that, patients in the trial had an easier time keeping weight on, which significantly aids to lung function as well.

Right now, people with CF are skydiving without parachutes - once the disease hits its breaking point (and this happens at a different age for everybody), our plummets are fast and unavoidable. Orkambi is our parachute. Orkambi can slow us down. Orkambi can save us.

Now, I won't pretend that Orkambi has worked/will work for everyone. Different people react . . . well, differently. But the results are there. The science is there. And where there is hope, there is life. Dum spiro spero. 

I just want to take this moment to thank everyone for their support. I want to thank you (yes, you!), the human who is reading this sentence. Together, we bought this drug. When the government refused to help us, we payed the scientists to do their jobs. We gritted our teeth and went door-to-door. We sold t-shirts, baked goods, and purple ribbons. We walked mile after mile, year after year, shouting to anyone who would listen that someday, CF would stand for "Cure Found." And no, this is not a cure. But it's the closest thing to a cure that any of us has ever seen, and that is something worth celebrating.