Runner Won’t Let Cystic Fibrosis Stop Him From Winning a 5K—or Qualifying for Boston

Original article on Runners World

“You just have to focus on what’s in front of you today, and breathe the best you can.”

When he was a kid, Michael Waltrip remembers getting bored at his brother’s soccer game, and asking his dad if he could kill some time running around the track. 

Waltrip was diagnosed with cystic fibrosis (CF) a few days after birth, so his father probably figured he’d last half a lap before breathing issues kicked in. 

But he took so many laps that they both stopped counting. Since then, he’s never really stopped. Not even when the breathing issues really did begin a few years ago.

A progressive, genetic disease, CF tends to worsen with age, and mainly affects the lungs and digestive system. The condition hampers the cells producing mucus, sweat, and digestive enzymes, often clogging airways and causing frequent lung infections, inability to gain weight, and difficulty absorbing nutrients.

For Waltrip, the digestive challenges have been lifelong, but he managed to avoid breathing problems until three years ago, when he turned 21. His doctors told him this may not have been simple luck—his running may have played a part in keeping him healthy, he said to Runner’s World.

When you run, the vibration that results from basically micro-jumping over and over is beneficial for the lungs, Waltrip said, because it helps to break up mucus. (Something most runners tend to experience, necessitating the perfect “snot rocket” form.) 

Since that first day of laps around the track, running had been a constant for Waltrip: After playing soccer himself as a kid, he switched to cross country in high school and logged 40 miles a week, then continued by joining the track team in college. 

Running may have helped ward off the breathing issues for some time, but when they did start several years ago, it was frightening. Waltrip recalled an awful feeling of being unable to take a full, deep breath. And that freaked him out.

“Until then, I think I didn’t acknowledge that I had CF because it wasn’t affecting me as much,” he said. “But then I came to the point where I couldn’t fall asleep because I couldn’t breathe properly, and I’d have to sit up and calm myself down for 30 minutes with breathing exercises.”

His running, which usually averaged around 60 miles a week, became much more of a struggle. Some runs would be okay, he said, but most would be filled with constant coughing and shallow breaths just to get the miles in.

“I still kept training, though,” Waltrip said. “I was being stubborn. That went on for six miserable months, before I finally decided that this was a big life lesson in accepting what was happening and getting help.”

His doctor put him on a daily treatment that included a nebulizer geared toward breaking up mucus, as well as a saline solution designed to irritate the lungs. Basically, he explained, your lungs don’t like salt, so they excrete water to balance it, and that helps break up the mucus and push it out. Waltrip also needed to inhale antibiotics, since people with CF who get bacterial infections in the lungs find those super hard to kick.

At the same time, he’s worked to stabilize his weight—an issue that’s always been a challenge. He can’t break down protein and fat very well because of his condition, and adding 60 to 80 miles of running a week on top of that means near-constant eating to keep from being too underweight. 

Despite these obstacles, though, he’s back in run-all-the-laps form. 

Waltrip recently won the Fairfax, Virginia-based Run Your Heart Out 5K in 16:02, and last July, he qualified for Boston during his first marathon attempt in San Francisco. Ditching his stubbornness and embracing daily treatment has helped him stay regimented, he said, and he’ll be at the Boston starting line in April.

“Just to be able to run with CF is kind of crazy and awesome,” he said. “But, like anything, you just have to focus on what’s in front of you today, and breathe the best you can.”

An Ode to Friends with CF – Guest Blog by Amy Sylvis

By: Amy Sylvis

Yesterday, I didn’t want to go to the gym to workout. This time of year, I have bad allergies, the aspergillus in my lungs tends to cause me issues, my sinuses get angry and I just generally don’t feel like working out while my airways feel so tight.

Working out can sometimes remind me of the lung damage I have. One day I am able to run 5 minutes straight (ya, that’s a good day for me!), and some days running for 2 minutes straight is a huge struggle. That can make me feel like I’m falling short in my CF care – like I’m at fault for not being able to exercise as well as I could a few days earlier. But I’m insanely compliant and have been my whole life, so I know the truth is that some days with CF my lungs just aren’t as open as other days. Nature of the beast.

I’m also just not generally a very athletic person. I know that working out- forcing air deep in to my lungs and in to my small airways –  keeps me healthier than anything else available to me on this planet. Studies back this up as well – exercise inhibits epithelial sodium channels (eNac), which leads to hydration of airways and makes it easier to cough up mucus.

Sometimes this knowledge isn’t enough to get me to the gym, though.

Yesterday was one of those days that I’m so grateful for my friends with CF. I’m a strong believer in surrounding myself with people who are better than I am – it’s a real ego destroyer, but it’s also an amazing life hack for self-improvement, no matter what the goal. While on the treadmill, I used an app called Marco Polo and spoke to two friends of mine with CF – both who are amazing runners and make sure to get in exercise daily themselves. I complained to them about how crappy I was feeling the past few days. I told them how my lungs were feeling so tight and I could hardly run at all compared to a week ago.

My goal every time I run is 30 minutes. Whether it’s running 5 minutes and walking 3, then repeat; or running 2 minutes, walking 2, then repeat – I’m on that hamster wheel for 30 minutes.  I need to have a goal and structure to survive the nightmare that is running. Ha.

“Run for longer today,” one of my friends said when she messaged me back on Marco Polo.

“WHAT???” I replied with an angry face in my video.  

“On days you feel worse, work out longer than you normally would,” she emphasized.

I almost threw my phone across the gym. I was so miserable I didn’t think I could even make it to 30 minutes, let alone longer.

Then I remembered – the woman I was talking to has half the lung function I do. Half. She’s a mom, takes care of 2 kids by herself, and she can run farther and longer than I can. If she can do it, so can I.

I was still only able to run for 2 minutes straight yesterday, but I ran 2 minutes walked 2 minutes for 35 minutes, instead of my usual 30. Halfway through those painful 35 minutes, my other friend sent me a message stating that he agreed with what had already been said – suck it up and exercise for longer. (He runs several miles a day, every day, like a maniac, so he further reinforced my need to push myself in the gym).

I can’t tell you how much better I feel today. My lungs are more clear, more open, and I feel so much better both mentally and physically. I’m not sure I would have pushed myself so much yesterday if it hadn’t been for my two friends offering support when I needed it, a.k.a. a swift kick in the butt.

Growing up, I didn’t have friends with CF. I didn’t go to CF camp, I didn’t come across a lot of kids with CF at clinic, so I didn’t have the benefit of these amazing interactions when I was young. At the time, I’m not sure I saw the need. Heck, I’m not sure I saw the need even a few years ago. I had no idea what I was missing out on, though.

Having friends with CF offers a dimension to life that I never thought was possible, and that I didn’t realize I needed. I’m not saying we should all be friends with every person with CF on the planet – but finding your tribe can be life-changing. Yup, I said it. Truly life changing.

Here’s to laughing, exercising, vesting, coughing, insulin-ing and CFTR-modulating together, CF community! We are so fortunate to have each other. FIGHT ON FOREVER!

How to Beat Brain Fog

By Wendy Caroline

As I sat down to write my column for this week, a massive wave of writer’s block hit me. This has been plaguing me for a while. Great timing, right?!

I started five different column pieces, each of which I would get a solid start on, and then nothing. I stopped understanding where the piece was going and didn’t like any of the words that I was writing. A few years ago, I started developing chronic fatigue. It started slowly, then quickly snowballed. In the past year, it has developed into brain fog. Very frustrating. I love using my brain for writing, reading, problem-solving, and critical thinking. It increasingly feels like cystic fibrosis is taking all these parts of my personality away from me. So here I am today, compiling a list of some tips and tricks that I use to combat brain fog and feel a little more like myself.

1. Don’t force it.

I can’t tell you how many times I have blocked my own brain by trying to force my way through brain fog. “Just do it.” How many times have we heard that? Unfortunately, at least for me, if I “just do it” and try to force myself to work through the brain fog, it just puts up more blocks. Then I get frustrated, and all I can think about is how I can’t think. It just spirals from there.

Cool, so how do you get past brain fog and still make your deadlines (because if you’re forcing it, that’s often why)? Be ahead of the game. I am guilty of this not being a natural instinct. In fact, I’m still learning how to do this. I used to be a procrastinator. I would thrive under the stress. My brain fog does not. Now I start writing and drafting at least a week before.

2. Get inspired.

One of the best ways to get inspired is to look to others. CF News Today columnist Brad Dell’s latest piece about brain fog directly inspired this post. It got me thinking about my own experience with brain fog, and how I have been insanely frustrated by its hold on my life. Find a piece of other people’s lives or the world around you that makes you think about your own. Capture it and go. I find that making a note of these inspirations in a note-taking app on my phone really helps because brain fog causes forgetfulness.

2. Create the mood.

Ditch the phone and whatever other fancy gizmos that cause a distraction. Find the type of environment that makes you feel inspired and ready to work. For me, that’s open space with lots of natural light and structured seating.

Next, put on some music — music that is going to make you focus and productive. My go-to is this Classical Essentials playlist on shuffle. This helps me drown out enough thoughts that I won’t get distracted without drowning out the thoughts that I need to work. Whatever you listen to, just make sure it doesn’t have words.

It’s also important to get your brain in the right mood. My brain fixates on chores and tasks that need doing, so I always make sure to get those done before I sit down to write. Also yoga and meditation, that’s some great stuff.

4. Let it flow.

A friend of mine gave me this very useful tip. Just let the words flow out of you, even if you don’t like them. When I use this technique, I have to write everything my heart desires and then walk away. Don’t reread it right then. You will get frustrated. Instead, write all you can and come back to it after you’ve had a solid break. For me, this is usually the next day. Your rough work can have a really good base but just needs to be re-worked.

I know that these tips and tricks are focused on writing, but I use the general ideas in all aspects of my life. Whether it is work, family, friends, or hobbies, brain fog can affect every aspect of your life. It’s one of the reasons that I haven’t been very active on any of my social media platforms — Instagram, YouTube, Facebook, and even my blog. As my brain fog developed into almost a daily issue, I took a step back and prioritized what I needed to focus on first. I truly believe that as these steps of beating brain fog become a habit, I will be able to handle more. Hopefully, you’ll see me around the internet again real soon.

» Find me on the internet at The Living, Breathing Wendy «

This article was originally published on CF News Today.

This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

26 Years and Counting with CF

By Ella Balasa

The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds.

During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The cake always had my name written across the top in big, pink, block letters, and the number of candles matched the number of years lived. I remember my dad’s voice quivering just slightly by the time he sang the last “Happy Birthday” lyric. I think that he sheds an extra tear of joy, metaphorically, for each year I get older. He’s happier than the year before, that I’m one year closer to living the long life he hopes and prays his little girl would have.

I know my parents have always had a seed of heartache that they’ve kept hidden far in the back of their thoughts, watered by the knowledge that they may outlive their youngest daughter. It’s a feeling unknown to me; I can only imagine the fear.

I realize that my disease continues to progress with each passing year, causing a gradual decline in the intensity of accomplishable physical activities. My birthday is somewhat of a grim reminder of what I’ve lost over time. It’s marked by at least one less thing I can do.

Toward the end of my high school years, my brother was my exercise coach. He was always encouraging (sometimes nagging) me to do frog hops down the driveway and sprints from the mailbox to the stop sign on the corner. I also was running about 1 mile, or half of one, in my neighborhood on the days I felt extra motivated. One early summer day, at the end of my loop, about half a block before I reached the stop sign on my corner, I felt the urge to cough. When I got to the corner, I started coughing globs of pure blood while bracing myself against the sign. It was one of the last times I ran. That was the year I turned 18.

When I turned 21, I stopped working out at a gym and instead got a treadmill and weights at home because I had started to require supplemental oxygen while exercising. Without the extra oxygen, my blood oxygenation levels would dip into a range that could cause damage to my heart. My lungs began failing at the job they are required to do: supply oxygen from the air into my blood vessels and to the rest of my organs.

I was using a nasal cannula and carrying around a machine that puffed loudly with every breath, but I couldn’t allow people to see me as abnormal. I still have a hard time being in public with the supplemental oxygen, and although I don’t yet require using it constantly, it’s caused my illness to become visible rather than invisible, as it typically was — and I struggle with that.

Last year, when I was 25, I learned what it feels like to do a 500-pound deadlift. Except I wasn’t in a competition. I was bringing just two bags of groceries into my house from my car less than 50 feet away. During infection exacerbations in my lungs, I am unable to walk at a normal pace, much less carry anything, due to my airways feeling like they are the diameter of a toothpick, and the lack of oxygen my body is receiving. During these times, I feel my body needing the extra oxygen that I sometimes deprive it of because of my unwillingness to show the signs of my disease.

Based on this column thus far, it might seem as though I lament on the difficulties. Honestly, I don’t notice much when my breathing becomes less limited. It’s easier to notice when my breath is restricted and I feel my body producing less, functioning less.

Despite these reflections on my inabilities, I don’t remember my birthdays for all the things I couldn’t do in that year. I do remember everything I could and did do, both on that day and the 364 days in between. For my 10th birthday, I remember having a picnic in the park and running around the playgrounds playing hide-and-seek. For my 21st, I remember going to a local bar, Baja Bean, and getting the coveted sombrero so everyone would know I was celebrating my big day. For my most recent, the 26th, I rode in a small seaplane over the city, then landed into the river.

Birthdays have always been, and always will be, a celebration of my life. It’s the progression over time, despite my best efforts to stay as healthy as I possibly can, that I’ve found to be somewhat discouraging at times.

When I blow out my 27 candles next year, there will certainly be a diminishment in my physical abilities. But I won’t be dwelling on it. I’ll be thinking about all of the new things I did, the places I went, and the people I met.

To read the original article, please click here.

Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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Bustle for muscle

by Brennen Reeves

A mom who played college basketball. A dad who entered the army at eighteen. A brother who received a football scholarship after high school. That’s my family.
Me, I like theatre and acting.

I like to workout. I can do most anything, though I tire when I run. Running, not a daunting task for anyone else in my family- nor was the ability to put on weight or the ability to gain muscles. Both were and still remain a struggle of mine today. I understand the weight section- I have CF, my heart beats faster than other hearts, my digestive tract is not on track and diabetes is well, diabetes. Sadly, I cannot understand why I cannot gain muscle. Or turn the muscle that now exists to a lean quality.
I exercise just as much as the next person.

My parents and brother, they’re athletes. Sure, being athletic doesn’t necessarily mean you possess muscle, but my family did. I retained some of those genes. I played baseball, I owned a lacrosse stick, I love to golf. I count that as a sport (so what if I ride in the cart?).
I have coordination.

I received a bilateral lung transplant over 7 years ago. Within that gap, and day by day I become more flexible, stronger, newly energized, with no luck of further muscle growth. The weight is there. Up about thirty-five pounds. But how come there is no significant muscle gain, or the leanness to which I work for? Could it be a diet issue? Because the thirty, sixty, ninety day routine after these 7 years has been ineffective. I still come up short and this lets me down, my physical appearance.

I’m 5’6” and weigh around 120lbs. My body is symmetrically balanced. I have new lungs. There’s the determination- so why this outcome or lack of?
This is not a lecturer post but more a collaborative question- what is your secret? Do you have a secret? Is it a secret?

Sure, I still have CF, yes, my heart still beats faster than other hearts, yes, my digestive tract needs aligning, and well, diabetes still remains diabetes. Just about every other facet since my surgery has changed, emotionally, physically, etc., and my body is still present just with a little more weight with nowhere to go.

I challenge this. Could it be the severed nerves under my breast plate have yet to heal or reconnect, making it harder to attract muscle in this area? The numbness from my shoulders on down through the wrists lose feelings during most points of the day, is that a sign indicating powerless limbs?

“7years. Brennen your body needs more time to heal”
Ok.
—–
Wait,
or could it just be my body?

6 ways to get back into shape after a CF-setback

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience setbacks in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF.

Continue reading 6 ways to get back into shape after a CF-setback

CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 68: CIRCUIT TRAINING 3

CYSTIC FIBROSIS WIND SPRINT 67: CIRCUIT TRAINING 2

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF.  Continue reading CYSTIC FIBROSIS WIND SPRINT 67: CIRCUIT TRAINING 2

CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1

For people with cystic fibrosis, getting “back” into shape is a common occurrence. Because of the nature of the disease, patients often experience set backs in both their health and fitness routines. But, exercise is an important and essential part of remaining compliant with treatments and medications in order to live a longer, healthier life with CF. Continue reading CYSTIC FIBROSIS WIND SPRINT 66: CIRCUIT TRAINING 1