Club CF 20+

People with CF who are LIVING, BREATHING and SUCCEEDING at 20+ may be in school finishing up their education as an undergraduate or continuing their education in graduate school.

This may be a time when they are sorting out their life, job-hunting, interviewing for a job and jumping into the career world. Reality may be setting in as they start to become more independent and are living on their own, managing money, paying rent and getting proper medical insurance.

The 20’s are a great time to be socializing, networking, starting relationships, exercising and playing sports, as well as figuring out time management and compliance with treatments while working.

August 2011

Keith Connolly

“I am at a very comfortable part of my life and have realized that exercise and being compliant by staying organized and planning ahead of time really pays off for my health.”

My name is Keith Connolly, and I am 26 years old. I was diagnosed with cystic fibrosis when I was just six weeks old, so the life I have always known is one with CF. I was born and raised in Cincinnati and am one of three brothers, two stepsisters and a stepbrother. Kyle is my identical twin, and he also has CF. Thomas, who is 17, and Michael, who is 8, do not have CF. Kyle and I were lucky enough to have mild cases of CF. I was not hospitalized until I was in college, but that was a very hard and grueling time for me. I did always stay active in sports, which most definitely benefited my health. Through grade school, I participated in baseball, soccer and football, and through high school, I was part of the wrestling and cross country teams.

I attended Xavier University in Cincinnati, and that is when, unfortunately, my health took a turn for the worse. I was diagnosed with “BOOP,” an inflammatory disease in the lungs. I was only the second person in the world to be diagnosed with both that and CF. I was also diagnosed my sophomore year with diabetes, and all of this caused me to be sick through most of college, with my PFT’s plummeting down to 40 percent lung function. However, I was committed and passionate about fighting through, and I am happy to report that after graduating college, I attended graduate school and received my MBA in 2010. I also passed my CPA exam that year.

My lung function is now up to 110%, and I credit this to consistent running and my newfound love for weight lifting. I became interested in competitive weight lifting about two years ago, and it has become a huge part of my life. This past July, I competed in the national championship and placed fourth in my weight class.

I am at a very comfortable part of my life and have realized that exercise and being compliant by staying organized and planning ahead of time really pays off for my health. As a new personal banker at JP Morgan Chase, I plan to continue staying healthy by planning out my days and staying motivated to beat this disease. I see a cure in the future, and I can only hope that I am here to witness that day!

Favorite Holiday: Christmas
Favorite Food: Steak
Favorite Pastime: Baseball
Favorite Movie: Rocky
Favorite Music: Rock & Roll
Favorite Color: Red
One Word to Describe You: Enjoyable
Words of Wisdom: “Exercise is just as important as being compliant with your treatments.”
Dream Vacation: Europe
You Can Find Keith On ... Facebook and LinkedIn

October 2010

Danny Ferrone

“My feeling about CF is simple: Your life is in your hands.”

A lot of young people with CF think that a gradual decline in their health is inevitable.  My life shows that it doesn’t have to be that way. 

I was very healthy as a kid, and I was constantly playing all kinds of sports, including years of being on very competitive travel soccer teams.  But my health started to decline when I was about 18 years old and in college.  By the time I was 22, my large-airway capacity had fallen to about 45 percent, and my small-airway capacity had reached to about 15 percent.  It was a struggle just to breathe right. 

I was just coming to grips with being a man and trying to make a life for myself.  My life, the quality of it and how long I was going to be here—those were the hard questions staring me in the face.  I went through some very hard times emotionally and, obviously, physically until I came to the decision that no matter what I would face in this life, I would fight with every thing I had, mentally and physically, until my last breath …because that is the only option, no matter what.

Today, I’m 26 years old, and my lung capacity is now back to nearly 60 percent.  I actually reversed the decline from CF, by literally ripping open my constricted airways. 

How did I do it?  I tried to qualify for one of the world’s toughest endurance races, the Ironman Championship Triathlon in Hawaii.  I threw myself into the task with fire and determination and something I call “positive madness.”  Also, put my training videos on YouTube, and I created the Fight Forever Foundation with my two best friends, Joe Dolan and Brian Annes, to help cure CF and inspire other people.

At the time I decided to train for the Ironman, I had never run more than three miles, I didn’t own a bike, and I had never done an open-water swim.  For the next two-and-a-half years, the Ironman was my one goal.  My typical routine was to get up at 3:30 a.m. and do my 90 minutes of CF treatments.  Then, I would run or bike for an hour or more.  I’d shower and eat, and I’d go to my construction job.  (I’ve been doing construction since I was age 12.)  I’d finish my eight hours on the job site at about 4:30 p.m., and then I’d do more training.  I’d go home, eat dinner, maybe do some work on the computer for the Fight Forever Foundation, and then sleep.  Then, I’d do it the next day. 

Along the way, I ran four marathons and completed three Olympic distance-triathlons.  I even quit my job and moved to Austin, Texas, for three months to train near where one of the 2008 Ironman qualifiers would take place.  Only the top finisher in each age group would get to go to the Ironman, and I came in 23rd, in a time of 5:48.  That wasn’t bad, considering the 25-minute bathroom break I had to take (thanks to CF) and a crash on my bike in a rainstorm. 

I didn’t qualify for the Ironman, but I gave the campaign everything I had.  I got healthy again, and I challenged myself.  Since I was a kid, I’ve felt most alive when I was doing something physical, and there’s no way that CF was going to take that away from me, without a hard fight.  Those lessons can be applied to anyone who has CF. 

Today, I’m working at a chiropractic and strength-training facility in Chicago, where I do things like give people electrical stimulation and ultrasounds before the chiropractor works on them.  In September 2010, I finished my courses at the National Personal Training Institute, which is my first step towards becoming a physical therapist and personal trainer.

Nagging injuries have stopped me from running or biking right now, but I still swim regularly.  I’ve also started conditioning at a boxing gym, and that’s an unbelievable workout.  With boxing, it’s all about explosiveness.  It’s just as hard—maybe harder—than the endurance workouts for the Ironman.

My feeling about CF is simple: Your life is in your hands.  That’s a big responsibility to lay on a kid or even an adult, and we wish it wasn’t laid on us.  But facing the challenge makes you stronger.  It’s a mental fight as well as physical. 

So, the bottom line with CF is that, unlike some other things in life, you can’t say to yourself, “I’ll cross that bridge when I get to it.”  You have to decide that the fight is worth it, dig in, and fight with everything you have.  And most importantly…in your toughest and darkest hours, remember that you are not alone.  There are not only many of us with CF, but many others in this life who are going through some very tough circumstances as well.  We are all in this together…DON’T EVER FORGET THAT.

Favorite Holiday: Christmas
Favorite Food: Italian
Favorite Pastime: Spending time with the ones I love
Favorite Movie: Rocky Balboa
Favorite Music: It depends on the mood
Favorite Color: Blue
Nickname: Boom Boom
One Word to Describe You: Heart
Role Model: I’ve had many different influences in my life both within my family and outside of it, and I’m very grateful to those special people who have taken the time with me along the way.
Dream Vacation: Any place with the ones I love
Words of Wisdom: You only fail when you don’t try

October 2010

Bryan Pendarvis

“I have career goals, a great family, lots of friends, and a long-time girlfriend.  I’m staying positive.”

“Stay positive and love your life.”  My brother and I loved that lyric from our favorite band, 311, and it is a motto that I try to live by.

We lost my brother, Shaun, on April 1, 2009, when he developed a serious infection more than a year after his successful lung transplant.  He was 27.  Shaun has always been my inspiration because he was always so positive, even when he was feeling horrible.  Because he was older, when I would have treatments for CF, he would have the “been there, done that” attitude.  He would tell me that it wouldn’t be so bad.  He would help me be prepared.  I can’t imagine going through this without having someone else who really understood what it was all about.

I’m 21 years old, and I’m a senior at Southeastern Louisiana University in Hammond.  I’m majoring in biology, and my plan is to go to graduate school and study microbiology; probably, I’d like to work in a microbiology lab.  The way I look at it, CF allows a bacterium, Pseudomonas, to grow in your lungs, and one of the things you can research as a microbiologist is which antibiotics kill bacteria. 

I have career goals, a great family, lots of friends, and a long-time girlfriend.  I’m staying positive.

But it hasn’t always been easy.  Early in my college career, I wasn’t feeling well.  I was exhausted all the time.  I would come home from class, and I had no energy to do anything.  I wasn’t hungry, and I was losing weight.  I would stare at a textbook, and the information just wouldn’t come to me.  I began to have doubts about whether I could handle college, even though I was class valedictorian in high school. 

Of course, doctors thought my symptoms were related to the progression of CF.  I went for tests, but nothing turned up.  Finally, a doctor thought about checking my glucose level — it was close to 600 fasting.  It turned out that I had full-blown CF-related diabetes, and that the lack of insulin in my body meant that my body was literally feeding off itself: I could not get energy from food.  I’m 6’2” tall, and by the time I was diagnosed, I had dropped to 128 lbs.  I was so under-nourished that the doctors wanted to place a feeding tube to supplement my nutrition. 

CF can cause diabetes because it interferes with the operation of the pancreas.  Doctors are aware of it, but it has not been well-known in the CF community until recently because many people with CF did not live long enough for the effect to take place.  Now that we are living so much longer with CF, diabetes is an issue that more than a few adults will confront.

When I started getting the insulin treatments, I felt better immediately.  I had so much energy that I was doing twice what I’d been able to do before.  I’ve regained weight, and I’m doing great now.  I’m back to playing intramural softball, and I’ve been working out at the school gym.  Being active keeps your lungs clearer, and it’s inspiring to see what people like Jerry Cahill can do in their 50s.

One of the lessons I took from my experience is that your doctor can’t know everything about your condition.  It took two-and-a-half years to diagnose my diabetes, and if I had known more about the symptoms, I might have been able to help identify the problem.  Every CF case is different, and each person has different variables.  It’s hard for your doctor to know what’s going on if he or she has a hundred or more patients.  So if you are knowledgeable, you can improve your care.  It’s one of the reasons that I’m interested in microbiology.

I was hospitalized in December 2007 at Tulane University Hospital when my diabetes was diagnosed.  My brother Shaun was at University of Alabama in Birmingham at the same time for his lung transplant. We were on some of the same medications during our recoveries, and he did great.  His lung function was 110% of capacity — I didn’t even know that was possible, but it was because his body had been accustomed to working with inefficient lungs — and he had more energy than ever.  As Shaun’s recovery continued, his creativity burst through in hundreds of paintings.  Then, he went on a camping trip and apparently was exposed to something that caused damage to his lungs.  We thought it was fairly minor like pneumonia, and he just needed antibiotic therapy.  But the pneumonia caused adult respiratory distress syndrome that he could not recover from since he was immune-suppressed from the anti-rejection medications.  The Pseudomonas caused his death, ultimately.

With my diabetes under control, I’m trying to raise scholarship money. One particular scholarship program almost requires campaigning on your campus for recognition, and so I have been reaching out to people in ways that I did not do in the past.  Before, I didn’t bring attention to having CF because I want to be treated as “normal” by everyone.  But the support I have received has been amazing, and it’s great to show people that having CF isn’t the worst thing in the world. 

Also, I’ve been in a trial for a new drug, and it’s phenomenal.  It makes your sweat test results come out as normal — like you don’t have CF.  It’s not exactly a cure, but it’s the biggest thing in CF treatment.  In the next couple of years, I think people with CF will be living far beyond anyone’s expectations.  That’s why I’m staying positive and loving my life.

Family members:  Cindy Pendarvis (mother), Chad Pendarvis (brother), Pat Pendarvis (father)
Favorite Holiday: Halloween
Favorite Food: Steak and sushi
Favorite Activities: Work on cars, bowling, video games, photography, golf
Favorite Sports to Play: Baseball and football
Favorite Movie: Donnie Darko and Kung Pow
Favorite TV Series: Dexter
Favorite Music: Rock
Favorite Band: 311
Favorite Color: Teal
Nickname: B-Pen
One Word that Describes You: Analytical
Role Model: My brother Shaun
Dream Vacation: The Galapagos
Favorite Words of Wisdom: “Stay positive and love your life”

May 2010

Steve Bell

“It’s not about the challenges, it’s about your attitude, how you overcome, and what you do with what you’ve learned from that experience.”

I was diagnosed with cystic fibrosis when I was three months old.  Throughout my life, there were always obstacles or doubts or challenges.  Some more difficult than others.  But it’s not about the challenges, it’s about your attitude, how you overcome, and what you do with what you’ve learned from that experience.  Whether it is the diagnosis of CF related diabetes, overcoming the daily battle, or walking on to the Ithaca College soccer team, I’m determined, I fight, and I prevail.

To stay healthy, I am compliant with my treatments and exercise five to six days a week. I enjoy playing soccer and running. I ran the 2009 New York City Marathon and finished in 3:57, achieving my goal of a sub-four-hour marathon.  Another example of how if you put your mind to something there’s nothing that can stop you.

Today, I’m 26.  I’m happy, I’m healthy, I’m living life to the fullest.

Favorite Holiday: Thanksgiving
Favorite Food: Bagel with cream cheese
Favorite Pastime: Playing soccer (not really a pastime, but I love it)
Favorite Movie: Almost Famous
Favorite Music: Classic rock
Favorite Color: Blue
Nickname: Little Guy, Steve-o
One Word that Describes You: Determined
Role Model: Anyone who lives each day to the fullest
Words of Wisdom: Words of Jimmy V. ... “Don’t give up, don’t ever give up.”
Dream Vacation: Go to a World Cup - planning on 2014 in Brazil
You Can Find Steve On ... Facebook

May 2010

Kayte Tranel

“Although I cannot control many aspects of my life, I have a desire to work hard and focus on the things that I am capable of achieving.”

I am on a mission to use the talents and abilities I’ve been given to their greatest potential.  Although I cannot control many aspects of my life, I have a desire to work hard and focus on the things that I am capable of achieving.

I’ve been blessed with some athletic ability, which complements having cystic fibrosis.  My goals as an athlete give me motivation to be compliant with my CF therapies.  At the same time, being an athlete has become a major component of my care plan, and it has significantly improved my disease outcomes and quality of life.

Finally, I have a passion for learning, and fortunately, health behavior is a growing area of research with plenty left to discover.  I am on a mission as a student and professional to help others value their health and wellness.

Favorite Holiday: Christmas. It includes my favorite things: family, a much-needed break from school, and my favorite foods—peanut brittle, sugar cookies, mashed potatoes and stuffing.
Favorite Food: Mashed potatoes—they go with anything.
Role Model: Several. My mom epitomizes strength and the ability to endure and overcome challenges. My boyfriend, Lucas—his patience and understanding are qualities that I strive to emulate. Abby, my sister, because she fearlessly welcomes challenges. Finally, Brett Favre, because he does what he loves, appears to be a strong leader and doesn’t allow others to place limits on what he is able to achieve.
Dream Vacation: Riding my bike (pedal-powered, that is) across a state that I haven’t visited. It sounds crazy, I know, but I enjoy activities that are physically and mentally challenging, plus I value opportunities to see places I haven’t been able to before.
Fun Fact about You: I’m a crazy dog lady. I have two Schnauzer mixes, Chance and Millie, who I spoil beyond measure.  Chance LOVES to run with me, while Millie prefers to enjoy naps on the couch where she can keep my feet warm. They are THE BEST!
You can find Kayte on ... Facebook

December 2009

Kurt Zimmerman

“If I am studying, I use my treatments as a study break.  Or if I am hanging out and watching a movie, I will put my vest on.”

I am 21 years old and was born in Pittsburgh, Penn.  When I was young, my family moved to Denver, Colo., but we eventually settled in Sacramento, Calif.  I was diagnosed with cystic fibrosis at the age of seven after my mother discovered I had nasal polyps.  Growing up, I was always compliant with my treatments, and I enjoy biking to stay healthy. 

I currently attend the University of California - Los Angeles, where I am studying rocket science.  I intend to graduate and perhaps pursue a career at NASA.  While I have a busy schedule at school, I still make time to for my treatments.  For example, if I am studying, I use my treatments as a study break.  Or if I am hanging out and watching a movie, I will put my vest on. 

Some of my hobbies include hanging out with friends, skiing, watching movies and of course, my passion; rockets.  I am in the Rocket Club at UCLA, and intend to get an internship in this field while continuing to pursue my degree in rocket science. 

Favorite Holiday: Christmas
Favorite Food: Sushi
Favorite Movie: Apollo 13
Favorite Color: Green
Role Model: Parents
Dream Vacation: Skiing in the Canadian Rockies
You can find Kurt on … Facebook

December 2009

Casey Flaherty

“In completing the [New York City] marathon, I proved that CF will not prevent me from achieving my goals.”

I am 26 years old living in New York City.  I am currently a full-time nursing student at CUNY Hunter in Manhattan.  I decided to pursue nursing after meeting so many wonderful nurses during my experiences in and out of the hospital, and it is a career that that will allow me to take care of others but also to dedicate time to my own health

To keep in shape, I enjoy yoga and running outdoors.  I recently ran for Team Boomer in the ING NYC Marathon and completed the race in 4:23:17.  In completing the marathon, I proved that CF will not prevent me from achieving my goals.  I also hoped that by running, I was able to inspire others with CF to take on a goal that will improve their health.

For me, running is the most effective form of airway clearance possible.  I continue to exercise every day to remain healthy, and I encourage all people with CF to get out there and clear their lungs through exercise.  I am fortunate to have a wonderful family and support system, and I am enjoying life while pursing my nursing degree.

Favorite Holiday: Christmas
Favorite Pastime: Running
Favorite Food: Pizza
Favorite Movie: Love Actually
One Word that Describes You: Determined
Favorite Color: Green
Dream Vacation: Bora Bora
You can find Casey on … Facebook

June 2009

Meranda Honaker

“We always have to have hope that things will work out in a good way”

When I was eight months old, I was diagnosed with cystic fibrosis. Growing up in the heat of North Carolina, I lived a normal, active childhood. Living with cystic fibrosis became more challenging during my late teenage years when I developed CF-related diabetes. I have been able to overcome the most difficult of days by maintaining a positive attitude, following my doctor’s orders and, most importantly, being as physically active as possible.

During my years as a high school student at New Hope Academy, I learned the importance of routine exercise and being compliant with my healthcare. By participating in routine physical activities such as tennis, swimming and jogging on the treadmill, every day I have more energy, less stress and an overall improvement in my ability to live a full life.

Now, I am 26 years old, and I continue to put my healthcare first. Currently, I am a full-time “online” college student and am working toward receiving a bachelor of science degree in communications from the University of Phoenix in 2012. I hope to use the knowledge I will gain in college to educate and encourage members of the CF community.

Favorite Food: Mexican
Favorite Movie: The Notebook
Favorite Color: Carolina Blue (Go Tar Heels!)
Favorite Music: Anything I can dance to
Role Model: Tiffany Christensen
Dream Vacation: Disney World
You can find Meranda on ... Facebook

April 2009

Chad Brown

“No matter what, never give up.  It is your life, and you only have one, so take charge and do with it what you will.”

I was diagnosed with CF when I was only one day old.  I was always treated very differently and in many ways babied.  This temporarily helped me cope with my disease; however, it eventually took a negative toll on me.  I really was not affected by CF until I was about 21 years old.  It was all downhill from there for about four years.  As a result of not taking care of myself, I was in and out of the hospital all the time and was eventually put on the transplant list. 

As a result of insurance issues, I eventually moved to Seattle, where my life began to change.  With the help from the doctors at the University of Washington Medical Center, I was able to get a new lease on life.  The thing that made the biggest impact on me was being disciplined with my treatments and exercise.  I quickly realized that the more I exercised, the more my health improved.  For me, swimming has kept me alive and healthy.  When I first started swimming, I could barely swim a lap.  I now swim five days a week for about 45 minutes each time and am feeling great!  My FEV1, which were at one point in the high 20s, are now at 58 percent, and I have more energy than ever.

Now, I am pursuing a college degree in engineering, working 30 hours a week, involved in a great relationship and looking ahead to marriage and starting a family.  Life is good!

Favorite Holiday: Thanksgiving
Favorite Food: Chicken
Favorite Pastime: Going to baseball games
One Word that Describes You: Committed
Favorite Movie: Field of Dreams
Favorite Music: Blues
Dream Vacation: Germany