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. 

The Year Ahead – Fall 2018 Scholarship Winner Guest Blog

By Roberto De La Noval

The next year is going to be a big one. I am writing against the clock to meet deadlines for my dissertation, sending out a book manuscript to a publisher, writing my first book review for an academic journal, presenting for the first time at a national conference…and all that on top of my first semester, in the Spring, of teaching undergraduates. Suffice it to say I’ll be busy. I wouldn’t have it any other way, though. Finally—at last—I feel like less of a perpetual student (I’ve been in higher education almost 12 years) and more like someone actually enjoying the first fruits of his career. That’s why I’m grateful to be one of the recipients of this year’s Lauren Melissa Kelley Scholarship; graduate school isn’t cheap, and so these funds will be of immediate help to me.

For example, I travel to one or two academic conferences a year, and often I cannot get the university to recompense me for all of the travel. That means that some of it comes out of pocket for me. The LMK scholarship will help me recoup these costs and make it more likely that I will pursue these opportunities to engage in the academic community and share my work. Another way the LMK scholarship will make a big difference is in allowing me to continue my language education. Now that I no longer am in coursework, the simplest way for me to continue improving my languages (German and ancient Greek are the ones I’m currently working on) is to have a private tutor who can work around my dissertation-writing schedule. These lessons are not cheap, but they significantly and rapidly help me improve my language skills, which in turn allows me to access more material for my scholarship and makes it possible for me to become a truly international academic who can engage with people from various parts of the world. It would be a welcome financial relief to know I have funds to continue my education now that I have finished formal coursework and am expected to be writing a book! In short, this is a critical period in my career of transition from student to scholar, and the LMK scholarship will facilitate this ctransition with greater ease.

In many ways the academic life is well tailored for someone negotiating the scheduled and regimented life cystic fibrosis demands. And I am happy to say that I’ve encountered nothing but support and encouragement from my faculty and colleagues when it comes to managing both my illness and my career. But it’s also a support in my work and life to know that so many others with CF are living their lives to the fullest, and that behind them there is a huge community of people who care about people with CF and work incredibly hard, often behind the scenes, to make a rich life possible for them. CFRoundtable and the LMK Scholarship are outposts of this amazing community of doctors, researchers, social workers, advocates, speakers, families, and friends. I relish the opportunity to be on the receiving end of their care, and I cannot wait to pay it forward in whatever way I can.

Calling All Students! LMK Scholarship deadline June 30th!

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Nancy Wech, Lauren’s mother, established this scholarship in Lauren’s name and memory. In Nancy’s own words:

Lauren Melissa Kelly was an extraordinary woman. Laughing, gregarious, spontaneous, fun, talkative, driven, thoughtful, smart, kind and loving — all descriptive terms for Lauren, who lost her battle with CF late in her senior year at the University of Georgia. In 1992, Lauren was chosen as one of ten Senior Leaders at University of Georgia. She had distinguished herself as a member of the Golden Key Honor Society, Mortar Board, Phi Upsilon Omicron, Gamma Beta Phi, the Tate Society and Delta Gamma sorority.

Lauren felt the most significant opportunities of her college career included participation in the reconstruction and formation of organizations, which will serve the university in the future. She acted as one of the re-founding members of the Phi Kappa Literary Society and was significant in the metamorphosis of the Z Club into the William Tate Society. Her other activities included Greeks Advocating Mature Management of Alcohol (GAMMA) in which she served as Secretary and Special Events Chair. She was also a member of the Women’s Glee Club for more than two years.

In recognition of her academic performance, Lauren’s degree of Bachelor of Science in Family and Consumer Sciences was awarded posthumously. At the time of her death, Lauren was engaged to be married and living off campus in an apartment. She lived life to the fullest!

Walt Disney said, “Don’t cry because it’s over, smile because it happened. It’s not the days in life you remember, it’s the moments.” As Lauren’s mother stated, “I smile because she happened to me. Now, I want you to smile because she has happened to you.”

Please visit our website for application and full scholarship criteria and details. http://www.cfroundtable.com/community-outreach/united-states-adult-cystic-fibrosis-association-scholarship/

Send any questions to scholarships@usacfa.org.

Three Ways CF Helps Me in My Career

Guest blog by: Reid D’Amico

Living with CF is hard. As I’ve gotten older, I’ve learned to pivot with many of CF’s new challenges. This has largely been an iterative process of successes and failures with plenty of feedback, patience, and assistance from friends and family. However, I’d like to focus on a few elements of CF that I believe have augmented my professionalism. These are elements that have taken time to develop, and are still being developed, but I believe that CF has provided a solid foundation for this professional growth. Continue reading Three Ways CF Helps Me in My Career