Relearning My Body After Getting on Symdeko®

After 33 years of living with cystic fibrosis, I thought I knew my body pretty well. Since I started on Symdeko®, I have noticed that my body is different, and I need to re-learn how to interpret my symptoms. 

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Aimee Lecointre
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This April will mark one year on Symdeko®. I started Symdeko six months after stopping Orkambi®, which didn't do much to help or stabilize my health.

My experience of starting Symdeko was much different than when I started Orkambi. Starting Orkambi brought up a lot of anxiety and excitement. I remember after taking my first dose of Orkambi, I was waiting for something to happen -- nothing monumental or life-changing, but maybe more coughing or something. But the day went on as usual, and the whole time I took Orkambi, nothing notable really changed for me.

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So, when I started Symdeko, I went in with no expectations of change, good or bad. Of course, I was hopeful it would help, but I didn't want to get ahead of myself.

Now almost a year later, I can say that things have changed. Before I go any further and share my experience with Symdeko, I just want to put out a friendly reminder: This is just my personal experience. Some might experience something similar, and others may experience something completely different. We are all amazingly unique, and our experiences with these modulators are going to be unique too.

Prior to starting Symdeko, I had a dry cough. Like really dry. Trying to produce a sputum sample has been difficult for most of my life. That's not to say I never cough up sputum, but it's not a daily thing for me, and when I do, it's not much.

I have had doctors throughout my whole life comment on how clear (as far as crackle sounds go) my lungs sound. And while I've always had a cough, it's not too horrible. I attribute this dry cough to high levels of inflammation, one of my biggest struggles with CF aside from gaining and maintaining my weight.

After a year of taking Symdeko, my cough is definitely more productive. Producing a sputum culture can still be a struggle sometimes, but things are definitely moving more than they were before. On the one hand, it feels good knowing I'm able to get all that yuck up and out easier than before, but it's also been frustrating. I've had to relearn what my body is telling me, and that's been quite the learning curve because I have always felt really in tune with my body.

This past January marked 15 months hospital free! That's HUGE for me, and I'm so thankful for that time. Although it definitely wasn't smooth sailing, I have never gone that long without being hospitalized.

However, near the end of January, I had one of my worst experiences with hemoptysis (coughing up blood). It stopped pretty quickly (thank goodness), but my CF doctor wanted me to come to clinic that week. Aside from that episode, I felt pretty good -- maybe a little more tired, but nothing else to note. But my PFTs showed otherwise. My FEV1

 

 had dropped more than 10 percent, and I was admitted that day.

Normally, I have been able to feel out my symptoms and know something was brewing before it reared its ugly head. But this time I didn't feel all my regular symptoms that usually mean it's time to pack my bags for a two-week stay at the hospital. And then I realized, it's been a somewhat subtle shift over time. My symptoms are different -- not just day-to-day but also when an exacerbation is coming on. I'm relearning how to listen to my body and what it's telling me.

It's been just a few weeks after that hospital stay, and I am still learning. It took me 33 years to be in tune with my body, so I'm sure this adjustment will take a little bit of time too.

I've also realized that my daily CF regimen needed to change. I've increased my treatments from twice a day to 3-4 times a day, and I've been switching up my preferred airway clearance treatments to see if there's something that works better.

I know many people might see these changes as a downside, but I look at them differently. The mucus in my lungs actually moves better, which makes it easier to get up and out. That's definitely a positive. Since starting Symdeko, my PFTs have also stabilized, and this is major, because this was such a constant struggle before. Did I mention I was able to stay out of the hospital for 15 months?!

These modulator drugs are so exciting, but we also have so much to learn. I'm thankful to be able to take these drugs and experience some exciting changes, even if it comes with more challenges as well.

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CFTR Modulators
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Aimee is a nutritional therapy practitioner and registered yoga teacher. She was diagnosed with CF 32 years ago when she was 2 weeks old. In addition to CF, she has endometriosis and has had two surgeries for scoliosis that involved spinal fusion and the placement of metal rods. Despite her many health challenges, she continues to live life to the fullest and look for the positive in every moment. Aimee has a continued passion to help others live a life that supports better overall health, especially those within the CF community. She resides in Salt Lake City with her husband, two pugs, and a cat. You can find more about what she's up to at www.thenourishedbreath.com and on Instagram @thenourishedbreath.

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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.