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.

A Tribute to Everyone with Cystic Fibrosis

Dear CF Roundtable Blog readers,

I would like to share a drawing that I recently created. Occasionally, in my spare time, between four treatments a day, working, cooking food, attempting exercise, and the intermittent phone call or meet up with friends, I hone my artistic skills. In all honesty, it is maybe every few months, but when I do create something, it brings me much pleasure. Cystic fibrosis, the greatest blessing and the greatest curse in my life, obviously affects me daily yet provides the most inspiration.

Continue reading A Tribute to Everyone with Cystic Fibrosis

Upcoming deadline for USACFA Scholarship!

We are extending the Spring 2018 deadline until November 15, 2017!

The United States Adult Cystic Fibrosis Association (“USACFA”) offers the Lauren Melissa Kelly Scholarship award each semester, in honor of Lauren Melissa Kelly. The scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees.

Please find scholarship criteria and requirements on our website and direct any questions to scholarships@usacfa.org.

http://www.cfroundtable.com/announcements/united-states-adult-cystic-fibrosis-association-scholarship/

A fall 2017 scholarship recipient, Elizabeth Shea, has shared with us how her college experience has been shaped by having CF and all that she has been able to accomplish through the help of our scholarship and her dedication to hard work and passion in performing music.  In her own words:

As a winner of the USACFA scholarship for the fall semester of 2017, I am fortunate to have the opportunity to share some of my experiences as a college student with CF.  I thought it might be helpful to kids who are applying to colleges now, or those who are in college deciding on a major, to hear a little about what I’ve done and why.

First I should say I am now a junior at Stetson University.  I play flute and I am a double major: music education and music performance.  I added the second major at the end of my sophomore year.  I also joined the music sorority Sigma Alpha Iota in my sophomore year.  Both decisions have had a big impact on my life at college.

Music education was my original major, and believe me, it kept me very busy.  Between classes, private lessons, multiple ensemble rehearsals, mandatory recital attendance, private practice, classroom observations and studying, sometimes I hardly have time for lunch.  But, I knew that if I added a performance major, my playing ability would be seen as more competitive down the road when I’m applying to graduate school, or even in competing for a teaching job.  So, I went for it.

My decision to join a sorority was also significant.  Not only am I a member, I am now the treasurer of our chapter.  With weekly chapter meetings, events, executive board meetings, financial reports, banking, etc. I’ve had to dedicate a decent amount of time to SAI.  But the payoff has been great.  The sorority gives me an awesome group of close friends who all share my love of music.  I’m able to socialize with them and not just spend time in classes, performing and studying with them.  I’m also getting some valuable experience being in a leadership role with responsibilities that are new to me.

So, as you can imagine, I’m really, really busy this year.  I’ve had to be very careful to keep up with my medical treatments so that I can stay healthy.  Bottom line is, don’t assume that because of CF you have to limit yourself or skip things.  I might have to work a little harder to keep up with everything that I’ve added this year, but I am enjoying all the new challenges.  Of course, this year is also harder because I’m a junior performance major and so I am expected to perform at a higher level.  No pressure, right?  But I think I’m up for it.  Just try things and see what you can do.  You can always cut back if you end up overwhelmed, but if you don’t try, you will never know if you could have done it!

 

AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

• In honor of the program’s 25th anniversary, AbbVie is awarding three $25,000 scholarships, including a new award category – the Blogger’s Choice Award
• Cast a vote online or via text message, through October 13, 2017, to help determine this year’s Thriving Undergraduate and Continue reading AbbVie Announces 25th Annual Cystic Fibrosis Scholarship Program Including 2017 Thriving Student Scholarship Contest and Blogger’s Choice Award

We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

By: Jacob Greene

Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. Continue reading We Can, Right? – Guest blog from USACFA Fall 2017 Scholarship Winner

Sign up for BreatheCON Sept 8th and 9th!

By Jeanie Hanley MD, President of USACFA and
John Mercer, BreatheCon 2017 Co-Chair

Sign up today for this FREE virtual event for adults with cystic fibrosis.

Our USACFA director, Mark Levine, is a featured Keynote Speaker on Friday and our CF Roundtable columnists, Aimee Continue reading Sign up for BreatheCON Sept 8th and 9th!

Big Air Jerry: Compliant with Cystic Fibrosis

Be inspired to be compliant. Watch this brief video to learn more.

Big Air Jerry is a video series created by the Boomer Esiason Foundation to educate young people living with cystic fibrosis. Continue reading Big Air Jerry: Compliant with Cystic Fibrosis

5 Inspirational Individuals with Cystic Fibrosis worth Following on Social Media

By Ella Balasa

I’ve created a list of young woman and men who make the most of life despite battling Cystic Fibrosis. They share their experiences, the good and the bad, on social media. They inspire, educate, and spread awareness about CF. As a person with CF myself, though I live a full life and experience similar obstacles and triumphs, I haven’t gotten the courage to show this kind of vulnerability. I hope they show both CF and non-CF people alike that we all can do many things we set our minds to despite having seemingly insurmountable obstacles in our way.

  1. Instagram: Fight2breathe

Caleigh is a 27-year-old woman who received a double lung transplant October 20, 2015. She shares posts about her daily struggles and triumphs in dealing with CF and transplant and now more recently dealing with the rejection of her lung transplant and her rapid health decline. She is incredibly knowledgeable about many procedures and tests her and her doctors discuss and she shares them with her followers in a way everyone can understand. Her genuine personality, charisma, and strength are all palpable through her words through which she relates her true fears, hopes, insecurities, and raw emotions about an unknown future. She finds something beautiful in every hard day, whether that be being able to see her pets, spending time with her loved ones, or just reading the uplifting comments on her posts.

  1. Instagram: lung_story_short

Rima shares her experience of fighting CF through humor and keeping lighthearted. Her sister shares her journey as being her caretaker while she waited for a transplant. She spent many days in the hospital exploring the hallways, playing games, crafting, and making friends with nurses. She has recently received a double lung transplant (5.14.17) and is now sharing her amazing recovery process day by day! Her lung function is increasing quickly and is gaining so much endurance and strength since being transplanted. She shares a lot about CF awareness and is becoming more known through the CF community.

“Hi my name is Rima and I have Cystic Fibrosis. I had come to the point in my health where my old lungs could no longer serve me and I was in need of a double lung transplant. Here I am now at 27 years old with brand new air baggies! It was a long journey but I am made it with the help of my trusty sidekick Laima, my sister. She joined me on my quest for new lungs when I decided to move to Colorado. The transplant center there decided that they didn’t want to do my transplant because they said that my post-transplant care would be tricky and risky due to how resistant the “bugs” in my lungs were to all antibiotics. So then the search for another center began. Thanks to my sister she discovered the U of M in Minneapolis MN with the help of a friend. Since that discovery, we are now part of the U of M family indefinitely. Throughout this whole thing, we decided we wanted to document and share everything Cystic Fibrosis related as well as transplant and organ donation. We started a blog last spring as well as started sharing on social media via Instagram, Facebook, and Twitter. We want to help spread awareness because there are so many people out there that are unaware of Cystic Fibrosis. There are also a huge amount of people that aren’t organ donors, many of them just don’t know how to become one but many just avoid the subject due to either personal or religious reasons. Another thing we want to show people with CF is that you can still have a fun-filled adventurous life, you don’t have to live your life cooped up in your house to keep good health. Laughter, sunshine and the outdoors soothes the body and soul! The Cystic Fibrosis community needs a cure, and with the help of spreading awareness, we can help raise funding for research! If you would like to keep up with our story you can follow us on Instagram: @lung_story_stort, Facebook: lung story short and for the blog atwww.lungstoryshort.com” -Rima

  1. Instagram: Tiffrich22

Tiff is a 28-year-old woman who was diagnosed at birth with cystic fibrosis. She resides in sunny California where she got a transplant November 30th, 2016 at Stanford University. A few years ago she started a campaign to meet her idol Taylor Swift at a concert. With the help of family, friends, and strangers, she got her wish. Her campaign led her to start her very own YouTube channel, LUNGS4TIFF, where she helps educate people and raise awareness about CF and the hardships while telling her story through videos. She intends to show others through social Media that having a positive spirit and desire for fun in life helps anyone get through the toughest times. She is thriving and planning for adventures to come.

“Through my Instagram, I have been able to show all of the sides of CF and transplant. I knew I wanted to be real and show the not so “glamorous” side of this disease, as well as the happy go lucky side. I feel by showing the hardships that I have faced, it has helped others know that it’s okay to struggle. I always say that there’s always someone going through much worse and that I’m lucky. Now with new Lungs, I am able to start my second chance at life and go check off my bucket list items. I have been able to check off my first NBA game (Go Warriors) and ride in a hot air balloon! I am blessed and can’t wait to post more about my adventures and my journey with new Lungs.

Another way I use Instagram to help the CF community and foundation is through mine and my best friend, Lea, @SaltyCysters page. We have joined forces to provide awareness and started making workout clothes to motivate the CF community to get their lungs moving and profits go to the CF Foundation to use for research and development towards a cure.

CF Awareness is very important to me. My passion is to help others and I think that by sharing my story via Instagram and all forms of social media, I am able to show that being positive is key to conquering this horrific disease. I will continue to raise awareness and share my story, hoping that CF will soon stand for Cure Found.” – Tiff

  1. Youtube: Staying Salty Youtube Channel

A group of 6 individuals talk, inform, help, and educate about their lives and experiences with CF. They come from all different backgrounds and live all over the country. They each post a video a different day of the week. They make videos on various topics related to living life with CF, including a day in the life, how they tell others about CF, surgeries they’ve had, medication organization, CF clinics and much more. Many videos are informative and interesting to view how others with CF are managing and succeeding in life! They have full-time jobs, they travel, they raise families, and importantly, they raise awareness for the CF community.

  1. Youtube: The Frey Life

A young couple, Mary and Peter, along with their pooch Oliver, share their day to day lives in daily vlogs on their YouTube channel. Mary has CF and they share the details of daily breathing treatments, doctor appointments, and the highs and lows of dealing with a chronic illness, both as a patient and a partner. Besides the aspect of Mary’s diagnosis, they share their strong faiths and their beautiful love story as a couple with their 100K subscribers.

When Cystic Fibrosis is Out of Our Control

There are those people that go with the flow and don’t stress as much about life events, but I would say a majority of people want to have control over how life pans out. I’m certainly the kind of person that needs to know how things will happen, I need to have a plan, and I worry about how my life will fall into place. Basically, I have a need to be in control. I have, for the most part, always maintained control over my disease, which is the most uncontrollable factor in my life. Continue reading When Cystic Fibrosis is Out of Our Control

OWN IT: Did Science Find an Answer to the Lack of Organ Donors?

As it turns out the future is now. From National Geographic:

In a remarkable—if likely controversial—feat, scientists announced today that they have created the first successful human-animal hybrids. The project proves that human cells can be introduced into a Continue reading OWN IT: Did Science Find an Answer to the Lack of Organ Donors?