The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis

By Survivor and Advocate Andy Lipman

Imagine every breath you take having to be inhaled through a narrow drinking straw. A person with cystic fibrosis does this every day, every moment, every breath. 

The median life expectancy for cystic fibrosis (CF) patients in the United States hovers around 40 years. CF survivor Andy Lipman has defied all odds to become a college graduate, Olympic-torch bearer, runner, husband, father, activist, and author. Lipman has written a new book The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis to celebrate the people who, like him, persevere and live life to the fullest every day even though they have a terminal, invisible disease. The book of hope focuses on 65 different warriors from all over the globe who have one thing in common – they each have cystic fibrosis. It features stories of people who defy the odds, take the cards they are dealt, and go far and beyond what was expected. The CF Warrior Project is set for release in May 2019, which is also Cystic Fibrosis Awareness Month.

Lipman is focusing on 65 stories in the book because that number is significant in the cystic fibrosis community.  The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.” Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.

Stories of victory in The CF Warrior Project include survivors who have: conquered Mount Everest; become a circus acrobat; received a lung transplant and ran a marathon a year later; and secured approval of breakthrough CF drugs in his country. These people, from teenagers to septuagenarians, have accomplished amazing things. Each story has its own merits, but the common theme among them is how these CF heroes maintain positive attitudes despite the challenges of their disease. 

“Living life requires more than just breathing. It requires loving every minute we have on this earth,” Lipman says. “This is a book about warriors who never give up.  They made their lives purposeful.”

Legendary singer Céline DionTransformers star Megan Fox, volleyball great Gabby Reece, MLB Hall of Famer Chipper Jones, comedian and actor Lewis Black, singer Richard Marx, American Ninja Warrior Isaac Caldiero,The Bachelor’s Colton Underwood,and country music singer Tenille Artsjoin the voices of ambassadors endorsing The CF Warrior Project. Each has been touched in some way by CF. Dion says, “Andy’s book will provide hope for those who so desperately need it. These stories of strength and determination are inspiration to keep fighting in our own lives.”

Lipman was inspired to write The CF Warrior Project because of his lack of CF role models as a child. He became concerned after reading an encyclopedia article as a young boy that said he would not live to see his 25thbirthday.  

“Now in my mid-forties, I thought a book about people living longer with cystic fibrosis was necessary and long overdue,” says 45-year-old Lipman.  “I’m not just talking about people who are living their lives, but people who are also accomplishing amazing things while doing so. These inspiring stories will give hope to a new generation of CF warriors and their families, not to mention those of us in our twenties, thirties, forties and so on who could use a reminder here and there that life is there for the taking.”

Lipman is not just relating stories of survivors; he is also dedicated to finding a cure for this genetic disease. He and his family founded the Wish for Wendy Foundation in memory of his older sister, who died from CF after only 16 days of life. As of 2019, the foundation has contributed nearly $4,000,000 to help raise awareness for cystic fibrosis and fund research for a cure.

The CF Warrior Projectis Lipman’s fourth book. He has two written memoirs telling his story battling the long odds of a CF diagnosis: Alive at 25: How I’m Beating Cystic Fibrosis and The Drive at 35: The Long Road to Beating Cystic Fibrosis. In addition, he wroteA Superhero Needs No Capeabout a young person who grows up wanting to play Major League Baseball, but he must do so while fighting cystic fibrosis. Lipman currently lives in Atlanta, Georgiaa., with his wife Andrea and their 13-year-old daughter Avery and 10-year-old son Ethan.

A portion of the proceeds from The CF Warrior Projectwill go to various charities benefiting cystic fibrosis, including many of those featured in the book. 

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!

Check out Jerry Cahill’s latest Cystic Fibrosis Podcasts

Cystic Fibrosis Podcast 196: Managing CF as a Track Athlete

In Jerry Cahill’s latest video podcast, we meet Teena Mobley – a Long Island University graduate and former track athlete. Diagnosed at 9 years old, Teena’s life changed as she adjusted to her new medication schedule while staying dedicated to fitness and health. She shares how exercise helps her manger her illness, remain positive, and continue to believe in herself.
This video podcast was made possible through an unrestricted educational grant from the Allergan Foundation to the Boomer Esiason Foundation.

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Cystic Fibrosis Podcast 197: Moving from Middle School to High School

In Jerry Cahill’s latest cystic fibrosis video podcast, he spoke with Aidan Neville – a 13-year-old with CF who started 9th grade this year. He has two siblings, 22 cousins, and many more who make up his support system. While Aidan loves to stay active – surfing, playing football, and basketball – his exercise sometimes takes a backseat to his disease.
Because he is often on IVs and has had over 24 sinus surgeries, Aidan’s biggest concern about starting high school is missing class and that possibly negatively impacting his chances to go to the college of his choice.
Tune in to learn more about Aidan and his journey from middle school to high school.
This video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.

Cystic Fibrosis Podcast 195 Summiting Mount Everest and Denali with Nick Talbot

In the latest CF Podcast, Nick Talbot shares his incredibly unique journey with cystic fibrosis. From being diagnosed at the age of 13 to his latest climb – a trek up Denali, the highest point in North America – he constantly challenges himself to reach for his dreams. Nick stresses the importance of pushing one’s own personal limits and never being scared to fail – because failure simply means you tried.
Tune in to learn more about Nick and his cystic fibrosis story.

This video podcast was made possible through an unrestricted educational grant from Novartis to the Boomer Esiason Foundation.

I Have Cystic Fibrosis, and CF Has Me

This Lung Life By Ella Balasa

I hear others say “I have CF. CF doesn’t have me.” This may be an accurate statement for some, the small percentage of patients who are not limited by this disease. Those who climb mountain peaks, work 60 hours a week, and raise three children. They could say this statement is true. They conquer everything, despite CF.

I am not one of these patients. I am optimistic, though. I’m optimistic that one day I will sprint faster than you (with transplanted lungs). I’m optimistic that I will leave this world having made some kind of impact on those around me, and maybe others that I am unaware of. But with this DNA in the cells of my lungs, I can’t do it all.

I’ve had significant events and minute moments in my life that have been affected by CF, although it’s not always apparent to the world around me. However, I don’t claim that CF has altered my life for the worst. Instead, I show the reality.

CF had me most recently when I was planning to go to the Cystic Fibrosis Research Inc.’s Family Education Conference. Being a director for the U.S. Adult Cystic Fibrosis Association, I wanted to connect with fellow CF directors and hear about the amazing new research the CF community is eager to benefit from. Unfortunately, due to CF infection guidelines and the bacteria I harbor in my lungs, I posed a risk to other CF patients, so I was restricted from attending.

Recently, as my form of exercise, I have been playing tennis. CF has me when it grasps my airways after just a few serves. I feel my lungs expanding but not getting enough air, exhausted from a previous sprint of just a few feet. I watch as the ball spins toward the far corner of the court. In my mind, my legs are in the air moving toward it, but in reality, they have just elevated the sole of my foot for the first step. The muscles are depleted of oxygen, waiting for the next burst for them to spring into action, but it never comes. Instead, they continue straining with what little reserve they have, for one-quarter of their potential. The quarter that comes from the lungs that function at one-quarter of what they should.

CF dictated the direction my life would take when upon graduation I was offered my dream job, but I didn’t take that career path. Spending four hours a day on breathing treatments, attending frequent doctor’s appointments, having occasional hospital stays and health insurance factors, as well as maintaining a social life and community involvement weren’t conducive to a full-time working schedule. Choosing not to advance in my career as my peers did made me feel left behind. Instead, keeping my health as the focus, I chose part-time employment.

CF has me when I have an exacerbation and lots of congestion in my lungs. On occasion during these times, I’ve taken the flight of stairs from the basement out into the sunshine after work. After a few steps outside, I feel the absence of air in my lungs. I gasp and then panic. Continue the article here. 

Cystic Fibrosis Podcast 191 ‘Why do you run?’ with Ben James

In his latest podcast, Jerry Cahill sat down with Ben James, a 19-year-old college student who was diagnosed with cystic fibrosis at 4 years old. Originally from Chester, VA, Ben now attends Mount Vernon Nazarene University in Ohio where he studies pre-medicine. When he isn’t focusing on school subjects like anatomy and physiology, Ben likes to play basketball and soccer, and also likes to run long distance.
Ben loves the challenge of running long distance for a number of reasons, including building character, facing challenges as an individual, and learning discipline, which helps with his overall medical compliance.
Click here to listen:
This podcast was made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Vertex Employees Donate $1M to CF and Other Communities via Matching Gift Program

By Carolina Henriques

Vertex Pharmaceuticals employees have raised more million $1 million  using  the Vertex Foundation‘s matching gift program in a show of commitment to causes that include the cystic fibrosis (CF) community, a company press release states.

The dollar-for-dollar matching gift program is being run through the nonprofit Vertex Foundation, established by the company in November 2017 as part of it’s charitable giving goal of donating $500 million to qualified nonprofits and other causes worldwide over 10 years.

To date, more than 500 Vertex employees have used the program to support 753 charities around the globe working to advance work in areas that include healthcare, human services, education, and disaster relief.

Vertex’s charitable commitment has four primary goals: supporting CF patients and caregivers worldwide, including enabling access to Vertex’s medicines; helping underserved students and young women with STEAM (science, technology, engineering, arts and math) education; supporting young doctors and scientists; and strengthening and fostering innovation in local communities through health and wellness programs.

“Giving back is in our DNA at Vertex, and our employees have a long history of going the extra mile to improve the lives of patients, students and their neighbors,” Jeffrey Leiden, president, chairman and chief executive officer of Vertex, said in the release. “I’m proud that The Vertex Foundation is able to help extend the impact of our employees’ giving and look forward to seeing the reach of these investments in the causes they care about most.”

Also as part of its 10-year commitment, Vertex awarded $400,000 in scholarships to eligible CF patients and their family members in May as part of its second “All in for CF” scholarship program. In total, 80 scholarships worth $5,000 each were awarded for the upcoming academic year.

Vertex, which specializes in cystic fibrosis, has three approved CF therapies: Kalydeco (ivacaftor), Orkambi (lumacaftor/ivacaftor), and Symdeko (tezacaftor/ivacaftor).

The company is also testing potential triple combination treatments for CF.

For the rest of this article, click here.

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.

Jerry Cahill’s CF Podcast: The Pre-Transplant Process with Dr. Emily DiMango

The latest video in The Path Forward with Cystic Fibrosis series, Dr. Emily DiMango, Director of the Gunnar Esiason Adult CF Program at Columbia University Medical Center, discusses the lung transplant process through the lens of a CF doctor.

First, she reviews the importance of CF patients participating in drug trials in order to start life-changing medications sooner. She then answers the following questions:

· What does pre-transplant management look like for a CF patient?
· When is the right time to be referred to the list?
· What is the referral process like?

Finally, she reiterates the importance of well-rounded treatment that includes physical health, nutritional health, and emotional health.

This video was originally posted on JerryCahill.com