Lungs First, Legs Second: A Marathon with Cystic Fibrosis

The workout was supposed to be 16 miles with 12 miles at marathon pace, and I was looking forward to it because my friend Eileen was biking next to me along the Charles River and I hadn't seen her in a while. But from the very first mile at pace, it felt like there was a wall in front of me. My legs never warmed up, there was a headwind the whole way, and I was stuck around 7:30 when I was supposed to be running 7:26, slipping a little slower with every mile.

After about seven miles, I stopped fighting it and jogged the rest, and Eileen and I ended up having one of the best conversations we've had in a long time. It wasn't the workout I wanted, but I still think I made the most of that run.

If you're new here, I'm Katie. I'm a marathoner with cystic fibrosis, and this blog is where

I keep the chapters of my story as they happen. This one is about the Indianapolis marathon on November 7, where I'm going for a 3:15, and about the weeks leading up to it, when my lungs had other plans.

That was the end of September, and it was the start of something I kept explaining away. I told myself it was fall allergies, or my asthma acting up, and that it would calm down on its own. Sometimes it did for a few days, and then it would come back again, in waves. What finally made me call my doctor wasn't even a run. Two weeks ago I was presenting at a family book club meeting and realized I was winded just from talking, and with a marathon a few weeks away, I didn't want to keep guessing.

When the numbers say you're fine

My breathing test came back great, which sounds like good news, and it is, but it's also frustrating in a way that's hard to explain. I like having evidence for what I'm feeling, so when the numbers say one thing and my body says another, I suddenly find myself explaining that I really don't feel well, even though the chart looks good. I know I'm not the only person with CF who's been there, and thankfully my nurse practitioner understood right away. She said she loved that my numbers were great, but that they obviously weren't telling the whole story, and she started me on antibiotics and a round of prednisone.

Honestly, I relaxed the moment I had them, because I know how my body responds once they kick in, and it's already starting to show. This Tuesday I had a workout with a 3-mile tempo, a 2-mile tempo, and a 1-mile tempo, each one a little faster than the last, and my legs felt bouncy for the first time in weeks. My lungs are still catching up, but I felt like myself again.

The word on the report

They also did a chest X-ray. I usually don't look at the results, since my doctor's rule is that if everything is fine, he won't call. So when he texted me right before bed asking whether I'd gotten a call from the nurse practitioner about a correction on my X-ray, I didn't know what to think. I'd never gotten a message like that before. I wrote back that I hadn't and asked if everything was okay, and then I waited, and no answer came.

So I opened the report myself, and one word jumped off the page: nodules. Cancer runs in my family, so that word landed hard, and it was the last thing I needed nine days before a marathon. The only thing I could hold on to was the word he had used, correction, and I kept telling myself that a correction had to mean something better. That's what let me fall asleep, even if it didn't stop the dreams. I dreamed about it, and so did Phil.

The next morning I found a text he'd sent at 10:30 the night before, after realizing he'd missed my reply. The radiologist had gotten it wrong. They weren't nodules at all. They were mucus plugs, which isn't unusual for someone with CF.

It was a huge relief, and part of me had known it would be fine. Still, there's a quieter thought in the back of my mind that if the two can look alike, I want to be sure, so in a few weeks, once the antibiotics and steroids have done their job, I'm going to ask for another X-ray. Not because I'm worried, but because I like evidence.

Lungs first, legs second

For as long as I can remember, I've worried about my lungs first and my legs second, and the reason is simple. I could be in the best shape of my life, and it wouldn't matter if my lungs were constricted, because if the oxygen isn't getting where it needs to go, my legs shut down.

There was a time when getting sick meant I would still race, but I'd finish near the back, with every breath getting harder and every mile a little worse, just like those workouts earlier this fall. I never saw myself as a sick person, but I got so frustrated. I kept asking why now, and why my CF couldn't just hold on for one more day so I could race the way I knew I could. I was competitive, I knew I had potential, and something kept bumping me back down.

Since starting Trikafta, and now Alyftrek, that has changed. I can get sick and still run close to my potential, almost the way anyone else would. This time doesn't feel like a big setback. It's a bug and my asthma, I'm already coming out of it, and I'm confident I'll feel good on race day.

Saturday- Running a Marathon with Cystic Fibrosis

What I'm most nervous about are the later miles, when my legs start to cramp and my lungs get tired. I'll have my inhaler with me, but I know most of the work will be in my head. When I start thinking too far ahead, my pace drifts, and at mile 20 there's still a 10K to go, so it's easy to start wondering how I'm going to hold on. The plan is to stay in the mile I'm in, run to the next marker, and not let my mind wander off without me.

The goal is 3:15, but if the clock says something else, I'll still call it a win as long as I never gave up and worked as hard as I could. This training block was hard, and not because of the running. There was a lot of stress, a lot going on with family, and a lot of anxiety, so I'm giving myself some grace, and I'm also really proud of how well I've felt through most of it.

The training is done. Saturday, I find out which shows up first.

I'll be sharing race day as it happens on Instagram, so follow along there to find out how Saturday goes. The full story of this build, from the first hard workouts to the finish line, will be up on YouTube later in November.