Life on Symdeko™ Three Months Later

I had to stop taking Orkambi® because my body couldn't handle it. I'm having a different -- better -- experience with Symdeko™.

| 5 min read
BuckHannah - Picture
Hannah Buck
Hannah-Buck-Symdeko-Hospital-Selfie-Featured-Rectangle

“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.”

This excerpt is from my personal blog. It was July 2, 2015, I was 19 years old, and the post was titled “Best Day EVER!”

I can't deny that July 2 was, for a huge portion of the cystic fibrosis community, pretty much the best day ever. Finally, a genetic therapy option for the mutation that the majority of people with CF have, F508del! And, how lucky I was to be included in that majority, as a double delta?!

After a few months of insurance rigamarole, I finally began taking Orkambi® in February 2016. I can clearly remember the morning of my first dose. Closing my eyes now, in high-definition, I see myself swallowing the purple tablet, taking a tear-filled selfie (#ForTheInstagram), and going downstairs to my apartment building's gym, as I did every morning. I biked seven easy miles that day. It was the last time I did.

Within a few hours, I was back upstairs in my apartment, pulling at my tank top and wheezing. Signs of an exacerbation had come out of nowhere, but that didn't make any sense. I knew they had to have been side effects -- I had been warned for months. Headaches, tightness, shortness of breath.

I made it two weeks on Orkambi® before I had to give up.

Hannah-Buck-Symdeko-Hospital-Selfie-Featured-Rectangle

I was devastated. Ten days on Orkambi® had deconditioned my lungs to the point where walking across campus to go to class was a workout in itself. The daily morning runs I had been enjoying for the past seven months seemed gone forever.

Orkambi® was no longer an option for me and I couldn't help but feel like I had been cheated. My parachute had huge, gaping holes in it, and I was falling faster than I ever was before. But the Cystic Fibrosis Foundation, along with my family, friends, and fellow CFers, encouraged me to remain committed to my optimism, for the new drugs will come, we chanted. And, they will be even better. So, I enrolled in pulmonary rehabilitation, ate as much food as I could, and I waited.

On February 12, 2018, Symdeko™ came, and words fail to describe how much better it is for me!

I have been on Symdeko™ for roughly three months now. I was *this* close to being able to say that I haven't been in the hospital at all during that time, but I was admitted six days ago for an exacerbation I couldn't seem to shake. But, it's okay! Hear me out…

  • For the past three years, I've pretty much gone to the hospital every 1-2 months without fail.
  • I started Symdeko™ during my last hospitalization at the end of March 2018.
  • April, May, and June are my worst allergy months.
    • Like ... BAD. I have severe asthma, as well.
  • I haven't NOT gone to the hospital in May since the fourth grade.
    • I'm in my fifth year of college.

So. Yeah. Do you see why I'm not too upset with being in the hospital right now? This is exactly the kind of thing I was hoping for when I first saw that one study showed Symdeko™ decreased the chance of pulmonary exacerbation by 35 percent! I'm beyond grateful.

The other huge thing I've noticed with Symdeko™ is that my weight is stable. I haven't gained a significant or even a noticeable amount of weight since I started the drug, but it didn't drop every time I got a sniffle or took too big of a dump (#HonestyHour). For the past three months, I've stayed at a cool 120 pounds, which is genuinely so encouraging for me.

It's been two tough years of fluctuation, body image issues, hair loss, vomiting, and even one episode where I lost consciousness, cut my head, and seized, so I am happy to be here. And yes, I've remained proudly vegan!

And finally, my lungs. I was hesitant to talk about how my lungs felt on Symdeko™, initially, because I didn't want to jinx the magic. But once no side effects crept up on me (and I really mean none -- still, to this day), I felt safe enough to tell my boyfriend the following:

It feels like my lungs have gone back in time.

Not by much. Just by a couple of years. It's hard to explain, but it feels as if a few inches of space in my chest have somehow been excavated, rediscovered, and offered back to me again. An organ donation of my own lungs. A parachute, still with holes, but with some patches, as well.

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Hannah is a student with cystic fibrosis at the University of Michigan, where she majors in creative writing and minors in digital studies. When she isn't writing, she likes to walk dogs -- her dog, someone else's dog, it doesn't matter -- and cook vegan food. To see more from her, check out her blogYouTube channel, and Facebook page, or follow @AHealthyHan on Instagram and Twitter.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.