College and CF – Spring 2018 Scholarship Recipient Guest Blog

By: Holly Beasley

Approaching college while living with Cystic Fibrosis can be undoubtedly frightening. Although, great challenges bring great rewards. This is what I have come to learn during my time at the University of North Carolina at Chapel Hill. While I am only a sophomore at the university currently, I hope the knowledge I have gathered through my journey thus far will serve to touch others with CF.

I believe that living with Cystic Fibrosis requires honesty with yourself and others. Therefore, I must be completely honest with you regarding the college experience while living with CF. I do not aim to discourage but to instead challenge you to prevail. I think a unique strength was placed within all of us with Cystic Fibrosis to surmount any challenge that presents itself in our lives. One of these being college, if you so choose.

College with Cystic Fibrosis will certainly not always be easy. As you may know, sick days, lengthy therapy routines, and hospitalizations come with the territory. Combine all of this with the pursuit of higher education and one can become overwhelmed. Balance and prioritization become key in the life of a college student with CF. I know I have spent countless nights reading my textbook while my Vest was simultaneously shaking my lungs. There have also been times when I completed assignments while lying in my hospital bed. This is where balance comes in to play. Finding a system that makes time for both school and health care is crucial, but I want you to be certain that it is also achievable. Despite some extra setbacks and effort, I finished reading all of those pages in my textbook and an assignment has yet to be turned in late. Now, this is where prioritization becomes a major factor. In order to be an efficient student, your health must come first. If doing both becomes too taxing on your body, please remember that it is ok to give yourself a break from school. This has been a difficult lesson for me to learn as a student who always strives for perfect grades. The times I have put school before my health, it has never worked in my favor. I only became sicker, causing a worse impact on my academic performance than if I would have taken the time to recover initially. Carving an hour or so out of my day for therapy when I first noticed signs of sickness would have been much easier than the eventual hospitalizations that resulted from the neglect of this fact. Always put your health first. The aspirations you are seeking through your college journey can only become a reality if you are alive and well to participate in these realized dreams.

All of this may seem rather challenging. So how does all of this ultimately become rewarding? Well, that is entirely up to you. I’d like to give some insight on how this process has rewarded me, personally. This might be the same reasoning that inspires you to pursue higher education or you might have a unique drive that motivates you. Either way, hone in on this sense of why it is all worth it.

Each day attending college rewards me because it serves as a constant reminder that I am equally as capable as anyone without Cystic Fibrosis. We are all different and many of us have encountered at least some degree of a setback in our lives. Mine just happens to be Cystic Fibrosis, but I can work with this along-side my peers. One classmate may have had a parent pass away, another battled a different disease or any other challenge that life may present. Yet, we can all come together in one classroom in order to learn and grow as equals. College allows me to reflect on the fact that the circumstances life presented me with do not define me as lesser. Instead, they exist to strengthen me so that I may become more. Life with Cystic Fibrosis has not been easy and this has never been truer than in my time at college. As I sit here now, I can still honestly say that I am happy to have Cystic Fibrosis. We are forced to realize how special we truly are when challenged by this disease. Yes, I have experienced setbacks and hard times while in college. They have not defeated me and they will not defeat you. At times, I may have to exert extra effort because of my CF. The reward of knowing that I got the job done regardless is much greater than any challenge that college or Cystic Fibrosis may introduce.

Pushing the envelope promising for patients

http://www.theherald.com.au/story/4762046/pushing-the-envelope-promising-for-patients/

A HUNTER-based fitness study looking at the effects of interval training on children with cystic fibrosis is achieving some “outstanding” results, a local exercise physiologist says. Continue reading Pushing the envelope promising for patients

USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Please share with young adults who would be interested and qualified!

The United States Adult Cystic Fibrosis Association (USACFA) is excited to offer the Lauren Melissa Kelly Scholarship award for the Fall semester 2017. The scholarship will range from $1500 to $2500 and be awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor’s degrees.

Continue reading USACFA Scholarship Opens June 1st 2017-June30th for Fall 2017!

Please Join Us for a Free Private Screening of Up for Air at CUMC

Please join us for a FREE private film screening of
UP FOR AIR

Tuesday, May 9, 2017
6:00 – 8:00 PM

Reception followed by screening and Q & A with Jerry Cahill and the film’s Continue reading Please Join Us for a Free Private Screening of Up for Air at CUMC

From Sustaining and Surviving – to Living!

By Andrea Eisenman

Seventeen years ago I was just going through the motions of trying to keep pushing towards each day with a schedule of treatments, eating, napping, lung bleeds and more treatments. Then starting all over again the following day with Continue reading From Sustaining and Surviving – to Living!

Up For Air is Available for Rent/Purchase

Up For Air, The Inspirational Award-winning Documentary Available for Rent/Purchase

We are excited to announce that the award-winning Up For Air documentary featuring BEF ambassador and 60-year-old pole-vaulting coach living with CF, Jerry Cahill, is now available to rent and purchase on Vimeo. Watch the full movie here:
https://vimeo.com/ondemand/upforair.

About Up For Air
The film, directed and produced by Artem Agafonov, was shot over a period of five years, highlighting the “lead by example” and “you cannot fail” attitude of Jerry Cahill as he overcomes the daily challenges of living with CF. Viewers will understand the importance of Jerry’s role as a coach and mentor to pole-vaulting athletes, as well as the sobering reality of Jerry’s daily medical regimen.

The documentary follows the steady decline of Jerry’s lung function, framing his body as a defective machine and pegging time as his ultimate antagonist. When Jerry’s lung capacity decreases to 19 percent, a double lung transplant becomes imminent.

Up For Air gives viewers a glimpse into Jerry’s journey as he transforms and vaults over the many obstacles of this next chapter of his life.

Learn more about Up For Air here.

Making it Matter Ep. 16

Making it Matter Ep. 16 – Football and Cystic Fibrosis

Making it Matter this week is Matt Mitchell, a freshman in college with cystic fibrosis, who joins the podcast today to talk about his career as a football player. Matt was a stand out player in high school at Joy Christian Continue reading Making it Matter Ep. 16

Gastroparesis and Cystic Fibrosis – By Meranda Sue Honaker

By Meranda Sue Honaker

Gastroparesis (delayed gastric emptying) is a common complication for many with CF; however, the condition is exceptionally hard to treat due to lack of promotility agents in the United States. In my early 20’s I began to experience Continue reading Gastroparesis and Cystic Fibrosis – By Meranda Sue Honaker

Making it Matter Podcast – CF Nutrition

Making it Matter Podcast Ep. 10 – CF Nutrition

Nutrition is something I love to talk about (well…. ever since I got my feeding tube placed in 2011). It is a vital part of CF care, something that Julia and I approach differently. While my pancreas doesn’t seem to work, Julia knows she is Continue reading Making it Matter Podcast – CF Nutrition

Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance

As part of his 60th year, Jerry has Activated a “Living List,” and will Complete 60 Events this Year — This is 60:60

New York, June 27, 2016 – The Boomer Esiason Foundation (BEF) today celebrates the 60th birthday of Jerry Cahill, a BEF cystic fibrosis (CF) Ambassador and double lung transplant survivor, who proves that age is truly just a number and that success is possible with a strong commitment to your health. Within the last Continue reading Jerry Cahill, Boomer Esiason Foundation Ambassador, Celebrates 60th Birthday and Demonstrates that People with Cystic Fibrosis Can Live a Normal Life with Exercise and Medical Compliance