26 Years and Counting with CF

By Ella Balasa

The day I was born, the median life expectancy of someone living with cystic fibrosis was 31. Although I haven’t reached that median yet, I feel like I’ve beaten the odds.

During past birthdays, my parents, brother, and I celebrated with cakes filled with raspberry layers and chocolate frosting. The cake always had my name written across the top in big, pink, block letters, and the number of candles matched the number of years lived. I remember my dad’s voice quivering just slightly by the time he sang the last “Happy Birthday” lyric. I think that he sheds an extra tear of joy, metaphorically, for each year I get older. He’s happier than the year before, that I’m one year closer to living the long life he hopes and prays his little girl would have.

I know my parents have always had a seed of heartache that they’ve kept hidden far in the back of their thoughts, watered by the knowledge that they may outlive their youngest daughter. It’s a feeling unknown to me; I can only imagine the fear.

I realize that my disease continues to progress with each passing year, causing a gradual decline in the intensity of accomplishable physical activities. My birthday is somewhat of a grim reminder of what I’ve lost over time. It’s marked by at least one less thing I can do.

Toward the end of my high school years, my brother was my exercise coach. He was always encouraging (sometimes nagging) me to do frog hops down the driveway and sprints from the mailbox to the stop sign on the corner. I also was running about 1 mile, or half of one, in my neighborhood on the days I felt extra motivated. One early summer day, at the end of my loop, about half a block before I reached the stop sign on my corner, I felt the urge to cough. When I got to the corner, I started coughing globs of pure blood while bracing myself against the sign. It was one of the last times I ran. That was the year I turned 18.

When I turned 21, I stopped working out at a gym and instead got a treadmill and weights at home because I had started to require supplemental oxygen while exercising. Without the extra oxygen, my blood oxygenation levels would dip into a range that could cause damage to my heart. My lungs began failing at the job they are required to do: supply oxygen from the air into my blood vessels and to the rest of my organs.

I was using a nasal cannula and carrying around a machine that puffed loudly with every breath, but I couldn’t allow people to see me as abnormal. I still have a hard time being in public with the supplemental oxygen, and although I don’t yet require using it constantly, it’s caused my illness to become visible rather than invisible, as it typically was — and I struggle with that.

Last year, when I was 25, I learned what it feels like to do a 500-pound deadlift. Except I wasn’t in a competition. I was bringing just two bags of groceries into my house from my car less than 50 feet away. During infection exacerbations in my lungs, I am unable to walk at a normal pace, much less carry anything, due to my airways feeling like they are the diameter of a toothpick, and the lack of oxygen my body is receiving. During these times, I feel my body needing the extra oxygen that I sometimes deprive it of because of my unwillingness to show the signs of my disease.

Based on this column thus far, it might seem as though I lament on the difficulties. Honestly, I don’t notice much when my breathing becomes less limited. It’s easier to notice when my breath is restricted and I feel my body producing less, functioning less.

Despite these reflections on my inabilities, I don’t remember my birthdays for all the things I couldn’t do in that year. I do remember everything I could and did do, both on that day and the 364 days in between. For my 10th birthday, I remember having a picnic in the park and running around the playgrounds playing hide-and-seek. For my 21st, I remember going to a local bar, Baja Bean, and getting the coveted sombrero so everyone would know I was celebrating my big day. For my most recent, the 26th, I rode in a small seaplane over the city, then landed into the river.

Birthdays have always been, and always will be, a celebration of my life. It’s the progression over time, despite my best efforts to stay as healthy as I possibly can, that I’ve found to be somewhat discouraging at times.

When I blow out my 27 candles next year, there will certainly be a diminishment in my physical abilities. But I won’t be dwelling on it. I’ll be thinking about all of the new things I did, the places I went, and the people I met.

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Stream “Up for Air” Documentary this Month for Free!

Jerry Cahill‘s documentary, “Up for Air”, provides viewers with an inside look at his personal fight for survival while living with #CF. During national #DonateLifeMonth (4/1 – 4/30) use the code: BEANORGANDONOR to watch the documentary for FREE! Tap the link to watch: https://vimeo.com/137872395

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How One Conversation Led Me to Being More Intentional About My Life

By: Ella Balasa

Would I ever live long enough to fall in love? Would I be able to graduate college? Would I be remembered for making some kind of impact on the world before I was gone? Would I get to travel to destinations where the breaking waves crashed against a rocky shore and the sea mist sprayed as I breathed deeply, and beside me stood …

Gabriella-Balasa-Beach-Featured-Rectangle

I’m startled back to reality. I sit in a hospital bed, surrounded by my parents in chairs on either side of me. I’m on the lumpy foam mattress, where I sit cross legged and my butt sinks at least 4 inches straining my back and adding to the pain the past few weeks — and this conversation — have caused me. My dad sits, lips pursed as normal when he listens intently. We are all listening to my doctor talk about my declining health, about my recent episode of pneumonia, and what my future may hold.

“No one knows the future,” I think, as the doctor speaks. My mind jumps again to that ocean scene, only it isn’t me standing on the shore, I’m now observing the scene from above, as if in spirit. Observing a couple embrace and I feel a strange sense of sadness, anger, and jealousy.

“It’s time to consider a lung transplant.” Those words, uttered from my pediatric CF doctor 6 years ago, made me, in an instant, think about all the joys of life I hadn’t gotten to experience yet.

Why me? That’s the first thought many people have when they can’t accept the reality of what’s happening. We try to answer unanswerable questions.

Later that summer, my parents and I followed doctors’ advice and scheduled a week-long transplant evaluation. A week of what I still consider to be grueling medical tests, even compared to other lung complications I have developed since. In the end, the transplant evaluators concluded I was not quite in the transplant window at the time. That fall, my health started to stabilize. I started my second year of college and I felt myself withdraw from the world.

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Thanks to The Boomer Esiason Foundation, CF Roundtable’s new Pearl Sustaining Partner

We would like to thank The Boomer Esiason Foundation for its continued support at the Pearl Sustaining Partner level. A special thank you goes out to BEF volunteer Jerry Cahill for helping make this grant possible. Because of this support, we can provide all of our CF Roundtable programs such as:

The Boomer Esiason Foundation helps support the CF community via its programs including:

  • Scholarships – BEF has numerous scholarship opportunities available
  • Lung Transplant Grant Program – covers transportation, housing and other expenses not covered by insurance that are related to transplant
  • You Cannot Fail – A motivation program that empowers people with CF
  • CF Podcasts – podcasts covering a wide variety of CF-related topics produced by Jerry Cahill
  • CF Wind Sprints – short videos by BEF Volunteer Jerry Cahill with tips for living with CF
  • Gunnar’s Blog – a personal blog of Gunnar Esiason, Boomer’s son, who has CF
  • Hospital Bags – goodie bags provided to CF patients of all ages during hospital stays
  • Team Boomer – encourages people with CF to be active by participating in events and helping to fundraise
  • Bike 2 Breathe – An annual 500-bike tour to raise awareness for the importance of exercise with CF
  • CF Century Rides – A personal goal of Jerry Cahill’s. Jerry is determined to do a century ride (100 miles bike ride) in all 50 states for CF!
  • CF: Live By Example – A pilot program where people with CF who are living, breathing, and succeeding will ensure parents of newly diagnosed children that CF is only a bump in the road, not a death sentence.
  • Club CF – an online forum where people with CF can share their stories

For more information on The Boomer Esiason Foundation please visit: https://www.esiason.org/

Check out Jerry Cahill’s new blog: Jerry Unplugged!

Jerry recently launched Jerry Unplugged, a new blog segment on his website where he will share insights, experiences, and more!

Who Am I?

I’m Delta F508. I’m R117H. I’m a cystic fibrosis patient. I’m post double-lung transplant by 5 years and 10 months.
I am all that and so much more. I am Jerry Cahill: athlete, coach, and friend. I have an unrivaled joie de vivre. I am positive, relentless, kind and generous. I am a man, who just happens to have cystic fibrosis. I don’t accept mediocrity. I never give up and always believe You Cannot Fail.
I was born one of six kids and, although I had CF, my parents treated me just like the others. After I was diagnosed, my mother wanted to shelter me, but my dad said, “If his life is going to be shorter, I want him to spend it with his brothers, having fun and being normal.” My dad believed that “you cannot fail as long as you try,” and I made it my life’s mantra.
I attended college and went to nationals in pole vaulting. It isn’t that I didn’t have issues because of CF, it’s just that I chose not to let them get in the way and be roadblocks. They were just detours on the way to my dreams. I went on to have a successful career while juggling the demands of CF. I never have and never will let the disease define me. The more it progressed, the more I pushed back.
Finally, nearly six years ago, at age 56, I needed a lung transplant and received one thanks to the unconditional love and generosity of a grieving family. I am grateful to my donor every day.  Continue reading…

Why I Do What I Do?

Because I can…
I believe in giving back & passing it on. I’ve been given a platform, so I use it to share what I’ve learned and experienced to benefit others. I really like the quote from the movie, The History Boys: “Pass the parcel. That’s sometimes all you can do. Take it, feel it, and pass it on. Not for me, not for you, but for someone, somewhere, one day.” I don’t do all this for myself; I do it to give hope to others, to inspire them to do more, fight harder, and be the best they can be. Everyone has limitations, but I want to inspire every person to go out and be the “hero of your own story.” Continue reading…

Doctor, Doctor!

I walked into the office the other day while Boomer was there and we began to make small talk. He asked how I was doing and I told him I had to see the doctor for my knee, because I’m having knee-replacement surgery in March. Boomer started to laugh and asked, “Just how many doctors do you have? You’re always seeing some doctor, and you act like it’s no big deal. You know, not everybody sees as many doctors as you do.”
“Boomer, I have CF! I’ve had a transplant. I have doctors but not that many, really,” I replied. Continue reading…

TEDx talk: The Case for Realistic Optimism

The Case for Realistic Optimism

Have you ever struggled to stay positive when dealing with a sick loved one? When Ray’s wife Rebecca went into respiratory failure from end stage cystic fibrosis he was faced with this challenge. What he learned was that choosing to be realistically optimistic helped him to remain strong for Rebecca during Continue reading TEDx talk: The Case for Realistic Optimism

Introducing Jerry Unplugged!

We are thrilled to announce that Jerry Cahill has launched, Jerry Unplugged, a new blog segment on his site.  Jerry is a Delta F508 and R117H #CF patient who is post double-lung transplant by 6 years this April! Not only is Jerry an advocate for #CFAwareness, but he is a coach, athlete, and friend! Join him on his journey as he shares his insights, experiences, and explains why he cannot fail❗
Stay tuned for much more of #JerryUnplugged!

Read the first blog here: http://www.jerrycahill.com/who-am-i/

Continue reading Introducing Jerry Unplugged!

Introducing ‘This Lung Life,’ a Column by Ella Balasa

Below is the first post of an original column that will be published once monthly. Enjoy!

Fulfillment to me means achieving a dream, pursuing a passion, striving to be happy every day, and finding joy in what I do. To say I did my best and made every moment count. I believe having those dreams and feelings of fulfillment comes from motivation. Motivation to do and be better in whatever parameters I set for myself. My motivation for life comes in the most innate form — the will to live. To live the fullest life I can, in the time I am given to live it.

Having cystic fibrosis has shaped me to want to live in this way. My motivation to Introducing ‘This Lung Life,’ a Column by Ella Balasahave this attitude has grown with each passing year, though it’s taken time to gain the maturity, experiences, and confidence to find my identity and purpose.
Continue reading Introducing ‘This Lung Life,’ a Column by Ella Balasa

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