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.

November 19 2014

Medora Frei

“You get to choose the color of your own sky everyday.”

I was only very recently diagnosed with cystic fibrosis, just a few years ago when I was 18. For the most part, my lungs are healthy, I really only have issues with my pancreas. It was a shock being diagnosed so late in life. I unfortunately, had to drop out of my high school track team when I found out I had CF. It was such a hard thing to do since I had competed at the state championship when I was on the team, one of my proudest moments in life.

Since I have been diagnosed, though, I have gotten back to exercising. I try to run 3 or 4 miles every day. I am convinced that keeps my lungs healthy. Running makes me feel great.

CF still remains a challenge. It has definitely affected my social life. I have found that I spend less time with my friends, especially when someone isn’t feeling well, I just can’t risk it. My family has also struggled with medical bills.

Despite having cystic fibrosis, I attend Concordia College in Moorhead, Minnesota, and I know that I am not alone. I’m just always trying to have fun and laugh.

I love music and play the mandolin.
My favorite band is the Avett Brothers.
Thanksgiving is my favorite holiday.
Yellow is my favorite color.
I love the Harry Potter movies.
If I could go anywhere in the world, it would be Ireland.

October 30 2014

Whittney Griffith

"For what it's worth: it's never too late to be whoever you want to be. There's no time limit, start whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people who have a different point of view. I hope you live a life you're proud of, and if you find that you're not, I hope you have the strength to start all over again."

 

I was just six weeks old when I was diagnosed with cystic fibrosis, so I have never known was it is to be “normal.” As I got older, my mom really helped me own my disease by making treatments fun and by encouraging my friends to come with me to my hospital visits. Her positive attitude about my disease has helped me stay healthy and out of the hospital.

I have a pretty regular routine – I wake up early to do treatments, like my vest, breathing treatments, enzymes, and anti-bodies every two weeks. While I don’t exercise as often as I should, my brother – who is a cross fit trainer – is helping me prepare for a Spartan race. I am looking forward to the challenge, even though I am a little intimidated.

Today, I am in college studying PR and Marketing and looking forward to graduating, have been married for two years to a wonderful man, and try to enjoy every single day by spending it with people I love.

My favorite….
Color: purple
Food: cheese dip
Holiday: Christmas
Movie: Anything Disney!
Sport: Cheerleading

If I could go anywhere, I would travel Europe so I could experience the history and architecture.

My mom is truly my role model – she has been there through it all.

If I could give someone recently diagnosed with CF any advice, it would be… CF is not the end of the world; it is something you can fight. It will change your life, but it will also help you appreciate the small things.

May 06 2014

Dryden Groat

My childhood was a challenge for my family and I, as it is with most CF cases. I was a relatively healthy kid despite having this disease. My CF affects my digestive system and weight gain a lot more than my lungs, so the only real concern for my family was to keep putting weight on me. I started playing baseball when I was four, ran around and played with my friends, and was just as active as any normal child. My parent's never held me back and always told me to never let my disease keep me from doing things I wanted to do.

I wake up every morning and sit on the end of my bed to start my breathing treatment. I do two puffs of Xopanex then follow that up with a HyperSal treatment accompanied by 20 minutes on the vest and finish it off with Advair. With every meal I take six enzymes (Zenpep) and I take three with snacks, I also drink at least two Scandishakes a day to get in some extra calories. After I get home from class and work I take my dog, Beau, who is a chocolate lab, out for a jog and some fetch. In a day, I'd say we cover about two miles. When we get back I strap up to do another breathing treatment but this one is followed up with pulmozyme, then when it's time for bed I take my daily medicines, prevacid, zyrtec, aquadek vitamin, nasonex, and a zinc supplement. 

I'd say my main motivation for staying healthy is other people living with CF and their families. I'm blessed to be in such good health and not have as bad a case as most others, so I fight for those who are less fortunate. I make it my goal to not be a statistic and to show others that even with this disease we can achieve great things. Along with those individuals, I fight for my family, my girlfriend, and my friends who have done nothing but support me through all I've been through. 

I can't really remember a single worst day with CF, but I can recall how hard the times are when I get tired of fighting. I ask the question, "Why me?" and I sometimes get depressed, but with prayer and help from those who are closest to me I think of all those who are counting on me and how this disease was given to me for a reason and I keep battling. 

My best day with CF was the day I won the 2009 Texas 1A state baseball championship with my high school team. It was more than just a victory for my team, it was a victory for myself because when that gold medal was hung around my neck I was proud of myself for never letting this disease keep me from playing the sport I love, no matter how hard things got sometimes.

Yes, everyone who knows me knows I have CF. I'm very open about it. I like to share my story and experiences with others.

I love to play and coach baseball, it's what I've done since I was a kid. I grew up with the sport and it's something I plan to be a part of until the day I die. It's the greatest sport in the world in my opinion. Along with baseball, I enjoy playing guitar, exercising with my dog, spending time with my family and girlfriend, drawing, and writing.

My career goal is to be a counselor. I really enjoy helping others.

My personal goals are to get married and spend a long, healthy, happy life with my spouse.

May 02 2014

Gunnar Esiason

“You are never out of the fight”

In terms of my health, I think I had a relatively normal childhood. I was diagnosed with CF when I was 2, but that never really slowed me down. By the time I was seven I was on skates and “playing” youth hockey. It was really more a matter of trying to keep my balance at that point. but I eventually figured it out. I also played little league baseball, soccer, and lacrosse. I was involved in just about everything. It was in high school when I really learned that exercise and staying fit leads to a healthy life. I played varsity football and ice hockey. I was really able to keep my CF under control whenever I was in season; it definitely made life a lot easier.

I graduated from Boston College in May 2013 with a degree in English. I think the experience of college life and lifelong friends are far more valuable than the degree I earned. I taught myself how to live independently and overcome any obstacle thrown my way, including two separate bouts of pneumonia during senior year.

My parents started the Boomer Esiason Foundation when I was two, so I guess you could say I have been living inside the CF world for my entire life. I have been fortunate enough to meet a lot of really great people that epitomize the strength human beings possess. On the flip side, though, I have unfortunately seen firsthand what happens when patients lose the desire to stay compliant. I stay true to my treatments and routines because I do not want to end up in that spot.

No matter how tough things may be on any given day, it is the love for lacing up my hockey skates and getting on the ice that gets me through anything. The sport demands such a high level of fitness for it to be fun. I don’t plan on ever giving it up.

My favorite color is Red
I love my mom’s fried chicken and mashed potatoes more than anything
My favorite holiday is the Fourth of July
My favorite movie is Braveheart
My favorite band is Blink-182

CF may be apart of you, but don’t let it define you.

April 14 2014

Rebecca Cedillo

"Though she be but little, she is fierce!" - William Shakespeare

As the youngest of nine kids, and the only one with cystic fibrosis, my childhood was far from normal. I recall hot summers when I stayed indoors and cool while everyone else was off at summer camp. Despite the obvious differences, my family always made me feel loved, at ease, and downplayed the seriousness of my disease. My mom made a decided effort to keep me from seeing all of the negative information that is available online. But, in spite of her efforts to protect me, I did lose an “online” friend who had CF when I was younger which caused me to struggle with depression through high school.

Today, I keep an extremely strict routine – staying medically compliant and making sure I get plenty of rest. I am on four aerosol medications, as well as the typical handful of pills. In addition to my prescribed medication, I also maintain a healthy, well-balanced diet with plenty of fresh fruit and veggies. I am a runner an enjoy getting out for a few miles in the morning as a way to start the new day. I am training for my first half marathon and am so excited for the experience. I don’t care how long it takes – I am finishing that race!

I am pretty open about my disease – all my friends have at least a basic knowledge of it. I keep some of my treatments and other regimens private, but like to share enough to raise awareness. Although I share some of my experiences, I do find the psychological aspect of CF to be the most challenging – which is why I study psychology.

My life has a purpose, and every day in reveals itself just a little bit more. My motivation to stay healthy is all around me: my family, my job, my education – everything really. My nine-year-old nephew, the only person in my immediate family who also has CF, motivates me to stay positive and set a good example. As cliché as it sounds, every single day I wake up is my best day. I get up and have the ability to be proactive, a luxury that is denied to many; one I never take for granted.

My hobbies are… being a ‘nerd.’ I love to read, study, and attend conferences on psychology and child development.

I love to… hang out with my family.

One day, I hope to start a summer camp for people with chronic illnesses.

My favorite…
Color – orange
Food – sushi
Holiday- 4th of July
Movie – Pocahontas
Musical artist – Led Zepplin

If I could go anywhere in the world, I would go back to Germany.

My nickname is ‘La La’ – something my brother called me when I was a baby.

My friends and family would describe me as – determined.

My role models are… my mother, of course. But also a high school teacher who had CF. He has a double lung transplant and was one of the most postitive people I know.

If I could give someone recently diagnosed advice, it would be… Take your doctor’s advice into consideration, but always make sure you do your own research and education yourself.

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