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.

If you are one of the many people LIVING, BREATHING and SUCCEEDING with CF, we want to hear from you! Show the world what you have done!
Click here to submit your story. All applicants will receive a CLUB CF t-shirt.

July 10 2012

Megan Whearty

Live every day like it is your last.

While this may be the most overused, reworked phrase today, it holds true meaning to me. I am not like other people my age who say YOLO (you only live once) and then go out and do something reckless. In my life, any day could actually be my last – because I have cystic fibrosis.

I was born in a small, close-knit Kansas town and was diagnosed with CF at birth – so everyone in my community knew about my disease. In some ways, I was lucky to have my entire community as a support system, even though the attention became overwhelming at times. I relied on my mother for her guidance and strength, and she gave it willingly. CF, for me, was easier to deal with because of my small community and the support of my mother. With that support, I was able to graduate Valedictorian of my high school class and gain acceptance to Kansas State University.

At KSU, I have had a harder time adjusting than the average person, but I am determined to succeed. I work a full-time summer job, try to exercise daily year-round, eat healthy, take care of myself and my appearance, and am proud to say that, even with all of that, I have a 3.7 GPA. I refuse to let CF slow me down and take over my life. I am better than my disease.

I have learned throughout my life to never, ever judge a person or situation without knowing the whole story; to accept and appreciate the differences among people. Without that attitude, I would never have lasting relationships because everyone I encountered would just look at me as “the girl with CF.”

I plan to stay healthy and to stay on top of my disease; to graduate from KSU and then to move on to my Master’s degree in family studies. My dream is the same as most girls’ dreams – to have a steady job I love and a husband and children to go home to every night. And I will reach my dream because CF will never take over my life.

My favorite color is… red.
My favorite food is… mashed potatoes.
My favorite music genre is… country!
My favorite teams are… Kansas State (duh!) and the Green Bay Packers.
If I could visit anywhere in the world, I would go to… anywhere that is warm and has a beach.
My stepdad nicknamed me… George, after Curious George, the monkey.
If my family and friends had to choose one word to describe me, they would say that I am… optimistic.
My role model is… my stepdad.
If I could give anyone who was recently diagnosed with CF advice, it would be… Your diagnosis is not the end of the world; it is maintainable. If you stay positive and take care of yourself – you will not have a negative outcome.

April 12 2012

Stefan Keasche

“Medicina vinci fata non possunt.”

I have been fortunate my entire life to be surrounded by supporting friends and family – from my immediate family all the way to my school teachers. Even when faced with up to 4 hospitalizations a year, my support group made sure I did not fall behind in school and never made me feel different. I was able to make friends in the hospital and count some of my doctors and nurses as some of my best friends today.

My motivation to stay healthy and compliant is simple: I love my family, my girlfriend – and especially love traveling with them and getting to experience new things with them. Without my compliancy, I know that I would be too ill to participate in any of the activities I love with the people I love.

In spite of my compliancy, I have had two liver transplants when I was nine and one kidney transplant in 2010. I plan to keep my new organs as healthy as possible and live with them for the rest of my life, a long, healthy, and happy life.

My favorite…
Color is blue.
Food is Cucina Italiana.
Movies are Doomsday, 96 Hours, and Joystick Heroes.
Musical artists are David Guetta and Pitbull.
Athletes are Alex Zanardo, Allen Iverson, and Vince Carter.
If I could visit anywhere in the world, I would go to either the United States or Japan.
My friends and family would describe me as friendly.
If I could give anyone recently diagnosed with CF any advice it would be… Live your life. Go out. Have fun. Enjoy everything you have and work for your health.

August 23 2011

Keith Connolly

“Exercise is just as important as being compliant with your treatments.”

The only life I have ever known as been a life in which I have had to deal with cystic fibrosis on a daily basis. I was born and raised in Cincinnati, Ohio in a family with six children. My identical twin and I were both diagnosed with CF when we were less than four months old – a diagnosis that impacted not only the two of us but also the rest of our family.

I have always been an active person – in middle school I played baseball, soccer, and football and then was a member of the cross country and wrestling teams in high school. My dedication to my physical health played a major role in my ability to stay out of the hospital for such a long period of time.

After graduating high school, I went on to attend Xavier University, at which point my health took a turn for the worse. I was diagnosed with “BOOP,” an inflammatory lung disease, on top of my CF – one of two people in the world with both diseases. In my sophomore year, my doctors diagnosed me with diabetes as well. Maintaining my health, at this time in my life, was a constant struggle. My lung function plummeted to a 40% function rate and it was then that I doubly committed myself to fighting through my diseases. I successfully graduated from college and earned my MBA and passed my CPA exam in 2010.

My lung function is currently at 110% and I owe that number to my dedication to running and my new-found love for weight lifting, which had become a huge passion. I competed in a National Championship of weight lifting, placing fourth in my class. I have come to the realization that remaining medically complaint, always planning ahead, and staying faithful to an exercise routine is what will enable me to live a longer, healthier life. I see a cure in the future and plan to be here to witness that day!

Favorite holiday: Christmas
Favorite food: Steak
Favorite past time: Baseball
Favorite movie: Rocky
Favorite Music: Rock & Roll
Favorite color: Red
One word to describe you: Enjoyable
Dream vacation: Europe
Social networks: Facebook and Linkedin

July 11 2011

Danny Ferrone

“We are all in this together. Don’t ever forget that.” 

A lot of young people with CF think that a gradual decline in their health is inevitable, but my story proves otherwise. I was always healthy as a kid, played for various sport teams, including a competitive travel soccer team. Even though I was always extremely active, my health began to decline when I was 18, and by 22, my large airway capacity had fallen to about 45 percent and my small airway capacity had reached about 15 percent.

I was at the point in my life when I was trying to become a man, make something of myself, and was constantly asking myself questions like, “How long will I be here?” and “What kind of quality life do I want and how much work am I willing to put in to get it?” After going through a dark time, I came to the decision that, no matter how difficult it was, I would fight my disease with everything I had until my very last breath.

Now, at 26 years old, my lung capacity is back up to nearly 60 percent and I am in better shape than ever before. When I made the decision to fight back, I decided to begin training for one of the toughest endurance races in the world – the Ironman Championships Triathlon in Hawaii. I completely immersed myself in my training with an attitude that I refer to as “positive madness.” At the start of my training, I had never run more than three miles, did not own a bike, and had never done an open water swim. Over the next two and a half years of training, I ran four marathons, completed three Olympic distance triathlons, and even quit my job to train for three months straight prior to the qualifiers, where only the top finisher in each age group would make it to the actual Ironman event.

Two of my best friends, Joe Dolan and Brian Annes, supported my 100 percent through this whole process and helped me create the Fight Forever Foundation and post all of my training videos online so that I could try to inspire other CFers and to raise money to cure CF. While I did not qualify for the event, I challenged myself constantly and kicked my health back into shape. Training for the Ironman gave me a way to prove that I would never let CF beat me without a fight.

My feelings about CF are simple: My life is in my own hands. It is not a responsibility I would have chosen for myself, but facing my personal challenges has made a stronger person both mentally and physically. I can never say to myself, “I’ll cross that bridge when I come to it,” and neither can any other person who has CF. I always tell people to remember, that in your toughest, darkest hours, you are not alone. Anyone who has ever faced difficulty, whether it is CF or another issue, can be a part of a support system. We are all in this together. Never forget that.

My favorite…
Holiday is Christmas.
Food is Italian.
Pastime is spending time with my loved ones.
Movie is Rocky.
Music depends on my mood.
Color is blu.e
My friends and family call me Boom Boom and would describe me with the word “heart.”
I have had many role models – both within my family and outside of it. I am grateful to all of those special people who have taken the time to teach me along my life’s journey.
My dream vacation is less about location and more about being with the people I love.

May 05 2011

Bryan Pendarvis

“Stay positive and love your life.”

I lost my older brother to cystic fibrosis, a disease I also have, on April 1, 2009. Shaun had been my role model, my strength, for my entire life. He was always the first to do a treatment, to try a medication, and eventually the first to have a lung transplant. One year after the surgery, when Shaun was 27, he developed a serious infection that took him away from me. Even though my brother is no longer with me physically, he is always with me in spirit – when I am getting treatments and remembering his encouragement or when I am just having a tough day and can think of his endlessly positive attitude.

My health started to deteriorate when I started college. I was in and out of the hospital, was losing weight, and had little to no energy to keep up with my studies. After a seemingly endless series of tests, my doctor tested my glucose levels and discovered that I had full-blown CF related diabetes. My body could not get the nutrients and energy necessary from the foods I was eating. I am 6’2 and by the time I was diagnosed, I had dropped down to 128 pounds and was so malnourished that I had to have a feeding tube. CF related diabetes has only recently become a well-known issue in the cystic fibrosis community and is sometimes overlooked as the cause of a decline in health. My one wish is that I would have known more about it and its symptoms so that I could have gotten better much quicker.

After my diagnosis and subsequent treatment, I was able to dedicate myself to my studies again. I am a Biology major and plan to get a graduate degree in Microbiology. Both areas of study lend themselves to learning more about the bacteria that can affect CF patients, which can only make me more aware of my disease and how to best treat it. Because I have much more energy and because of my experience with the slow diagnosis of diabetes, I have moved away from being private about my disease and have been campaigning to create a scholarship on my campus.

While my life has not been perfect and I have seen tragedy, I am more determined than ever to reach all of my goals and to live my life positively, the way Shaun would have wanted.

My favorite…
Sports are baseball and football.
Band is 311.
Television series is Dexter.
Holiday is Halloween.
Foods are steak and sushi.
Movies are Donnie Darko and Kung Pow.
Music is rock.
My friends and family would describe me as analytical.
My dream is to vacation in the Galapagos.
My role model was and always will be my brother Shaun.

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