Thank You Cystic Fibrosis!!!

Thank you cystic fibrosis.

How did I get to a point in my life where I can actually thank the terminal disease that robbed me of normalcy from the moment I was born? I often wonder that myself. I remember crying on my Superman comforter at the age 9 when hours earlier I opened up the "C" volume of the encyclopedia to learn that because I was born with two lousy genes, my life was on a timer that would likely go off at least 50 years before any of my friends. I had cystic fibrosis (CF), a disease that people knew very little about except that it was a killer of hopes and dreams.


Wearing this mask made me feel sicker than I already was.

Cystic fibrosis was always in the back of my mind growing up. I was the only kid who brought his mom along during our patrol trip to Disney World. It was not because she wanted to ride "It's a Small World After All" 10 times. She disguised it that she was a chaperone but she and I knew exactly why she was there. It was because I needed postural drainage therapy everyday. That's where my parents hit my sides, front and back to loosen the phlegm in my lungs. By the way, I learned long ago not to tell my teachers that my parents hit me everyday...it kind of disqualifies my mom and dad from parents of the year consideration.

That wasn't the only thing that made me look different because of CF. I was the only kid who trudged towards the principal's office at lunch to swallow pills, a skill that most of my peers would not master for another 15 to 20 years. In hindsight, it might have been cool to tell my peers that I was getting in trouble everyday hence my visits to the principal. I could have been the bad boy because a lot of bad boys look skinny and malnourished, right?

I was the only child whose biggest worry wasn't math or social studies tests but rather pulmonary function tests which decided whether a hospital stay was in order.

As I got older and my friends were applying to colleges, I was too busy worried about biannual trips to Chapel Hill, North Carolina to visit my CF specialist. I didn't think I would be able to go to college because my parents needed to do my therapy every day. It wasn't until my sophomore year of high school and the invention of The Vest that I was able to have some hope that I could live a life of independence. It's funny that most kids at 16 consider their independence a driver's license but for me it was an 80 pound machine and a vest to help me loosen mucus in my lungs. The irony was that to be independent, a 5'6" skinny kid had to lug around an 80 pound machine when I traveled. As I worked out and got stronger after college, Hill-Rom, the makers of The Vest, was actually building lighter machines.

In college, cystic fibrosis did the unthinkable. It made me wish I wasn't here anymore. I didn't like feeling different. I tried "normalcy" by stopping my meds and my treatments but instead of feeling less different, I felt more. I couldn't walk three steps without coughing. I couldn't play sports anymore. Worse, I hated being around anyone. I was skinny, depressed and failing out of school. I was barricading myself in my room for days at a time. Life was in a word, "unlivable."

It's a quarter century since those days hibernating in my room rooting for rather than fearing for my demise. I'm here today primarily because I finally understood that CF was not "causing" anything; I was. Instead of saying CF made me feel different, I had to reword it and say "I felt different because..." I had to learn accountability for my feelings and actions. I had to change my course of action in the classroom, the gym and in the everyday world.

Today I live mostly normal. I am a husband, a father, a little league coach for both of my kids, a workout fanatic, a motivational speaker, a fundraiser, an author and a person who just happens to have a disease that is the number one killer amongst genetic disorders in the United States. Yes, I do two to three hours of therapy and take 40 to 50 pills daily and my median life expectancy is still roughly 30 years shorter than my peers but I am alive and even more importantly I want to be alive and that's a 180 degree change compared to my college days.


I never liked holding a nebulizer, but by doing it everyday, it has allowed me to hold more precious things.

I am human though and I still dread going to quarterly doctor's appointments. I still worry about the future. I still wonder why my sister lost her battle after just 16 days and I'm still entrenched in mine. People often wonder how I can be so positive (Except about my Atlanta sports teams but who can blame me, right?) about life. The thing is I'm not always positive as my family will attest. I often deal with my anxiety and depression which I've sometimes found more difficult than CF itself. Despite every battle, I've learned a lesson that most people don't learn until it's too late...

Life for the most part is "NOT" unfair. Life is what you make out of it. There are opportunities to do so many special things. I could look at having CF as a dagger that killed my normalcy before I was old enough to understand what normalcy even was or I could understand some of the special things I've been able to participate in because I was born with this disease. For a long time, I chose the former but during the second half of my life I've learned to relish the latter.


There's no way I would have been able to do this in 2001 if it hadn't been for CF.

Ironic as it sounds, cystic fibrosis has saved my life. It has taught me the importance of physical fitness, emotional accountability and the appreciation for the little things that most people with two good genes take for granted.

I'm not the same person I was back in my childhood days. Many of us aren't. The difference is that my change had to occur or I wouldn't be here today. One thing that hasn't changed since my younger days is that cystic fibrosis is still in the back of my mind at just about every moment. The difference is how I respond to its constant beckoning. It is now less a feeling of fear and more appreciation for the journey it has taken me and the destination I have been fortunate to find.

Thank you cystic fibrosis.


Wearing a mask no longer makes me feel sick.

Why is it so hard to deal with anxiety and depression as opposed to say something physical like cystic fibrosis?
When you deal with cystic fibrosis as I do, people often tell you that you're heroic even though you may not do anything heroic. You're just a victim of circumstance. Granted, the work those of us put in can be defined as heroic but just having the disease is not one bit heroic.
When you deal with something mental like anxiety and depression which I also do, people often tell you to "snap out of it." Not many people unless they deal with mental illness or work as a therapist see the heroism but trust me there are some days that surviving those 24 hours when your brain does not want you to could be labeled heroic.
Mental illness is stereotyped very negatively in this country because of some of the awful things that have happened regarding guns and mental illness. Trust me though, there are some amazing people in this world that deal with mental illness too. It could be your neighbor, your best friend or quite frankly anyone you know. Most likely, you'll never know because this disease is most likely "invisible" to outsiders.
I deal with depression and anxiety but I used to look at mental illness the way most people did. I saw it as a cop out. Now that I've been diagnosed and am on meds, I see the difference it has made in my life.
Nearly 1 in 5 Americans deal with some sort of mental illness and around 450 million people worldwide currently suffer from such conditions, placing mental disorders among the leading causes of disability globally.
Please help erase the negative stereotypes of mental illness and pull for the millions of invisible heroes around the world.
After all, one day, like me, you may realize that you are one of them.
Thank you!

My Russian Roulette

You ever heard of the game Russian Roulette? A person puts a gun to his head and he doesn't know if a bullet will come out when he pulls the trigger. How about a Major League baseball prospect who uses a radar gun to determine if he is going to get signed by a scout? Or maybe you have a test to take and you realize you didn't study the right material when you see the questions and you know that test counts for 90 percent of your grade.

What do all 3 of these things in common? The results could vary but regardless there is a lot is riding on them.

That segues perfectly into the PFT or should I say the Russian Roulette of cystic fibrosis. The PFT or pulmonary function test is a test that has a patient breathe in and then blow out as hard as he or she can three to four times and the results give you several numbers but one in particular which determines a lot. It's called the FEV1 and this determines how much you breathe out in the first second. This number can determine antibiotics, hospital stays or even being put on the transplant list.

I go to the clinic tomorrow to take my Russian Roulette, I mean PFT. This appointment is sooner than normal since my numbers have been down. Over the past few months, I've experienced some tightness in my lungs so I've combatted it with the only thing I know how...being aggressive with medicine and working out every day like there is no tomorrow.

Over the last few months (other than some of our travel days), I have been putting in 45 minute workouts including lifting weights, ab workouts, 1,800 jump ropes and 600 jumping jacks per day. I'm running between 1 and 4 miles per day and did the Peachtree Road Race in record time in July. I'm working out with a trainer once or twice a week. I'm doing three 45 minute therapies each day and cutting down to two on the weekend. I've added swimming laps to my routine. They're not typical laps though. I swim to the end of the pool (not regulation length) and back without a breath six times (taking breaks in between) and then do a few other laps in between. In comparison, a few years ago, I would be lucky to do half a lap without a breath. I've gained some weight which is good with CF but I'm now trying to eat a little better so that the gain is mostly muscle and not Rice Krispie Treats...I mean fat. Ha Ha! I am also doing research by asking questions to doctors and finding out what kind of machinery works for patients (my nebulizer machine blew while I was in Europe - thank goodness I brought a portable backup device) and have bought a new cleaning device as well as a new nebulizer machine. What hasn't changed is taking 40 to 50 pills per day and being anxious about tomorrow's PFT.

Two months ago after a bad test at the doctor, I went home and the next day did about 15 PFT's. The average person should do 3 max! Needless to say on the last one, I blew so hard that blood came out of my throat and onto my portable device. I was freaked out, exhausted and deflated. And for the last few months I've been gun-shy about doing a PFT for the fear of low results and obviously blood spewing out.

CF requires giving it everything and some days it's about giving it more. While this doesn't always make a difference in the numbers, it makes a difference in how one feels mentally. I still deal with anxiety and depression and I know it's not easy on my family. I go months closing myself off but I'm working on that. It helps to have the strongest person I know in my corner, my wife. Without her, I seriously do not know where I would be.

There are a lot of bright spots right now. Vertex Pharmaceuticals is working on a triple drug combination that will finally include my genotype. It will probably be available in 2019 but maybe even as soon as 2018. The swimming has allowed me to have time with my kids and become an Olympic Champion at finding dive toys. I realize even more how amazing my wife is and how fortunate I am to have her. Finally, life, while difficult at times, is still precious.

Live your dreams and love your life!

Andy