‘It’s time to consider a lung transplant.’ I was terrified of dying before I’d started living.’: Young woman with Cystic Fibrosis fights ‘to live the fullest life I can, in the time I am given to live it’

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“Fulfillment to me means achieving a dream, pursuing a passion, striving to be happy each day, and finding joy in what I do. I want to say I did my best and made every moment count. Having 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.

I was born with a genetic progressive lung disease called Cystic Fibrosis. It causes the buildup of thick sticky mucus primarily in the lungs, and over time the cycle of bacterial infections which grow in the lungs causing inflammation leads to scarring, lung function decline and eventually respiratory failure. Having cystic fibrosis has shaped me to want to live each day to its fullest. My motivation to have 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.

Courtesy of Ella Balasa

Growing up, I was always a quiet child, especially around strangers. It terrified me to even THINK about having to talk to somebody I didn’t know. I stayed this way through high school, a time I was more insecure with myself than at any other point in my life. Having CF was a huge obstacle. I was always worried about what others were going to think when they found out I was different.

Luckily, I was seldom actually told anything negative, and actually the questions were mostly just out of curiosity. I often got asked, ‘Why do you have to go to the nurse’s office in the middle of the day?’ (This was to do my breathing treatments and take digestive enzymes and drink a weight gain supplement.) I was very shy growing up so I didn’t have too many friends and wanted to stay away from the attention being drawn to me. It was mostly to avoid questions and the fear of what people would think of me. Two of my best friends would always remind me to take my enzymes when I ate and they would frequently sit with me while I had to do a breathing treatment which would interrupt our playtime. In middle school one year, when I was hospitalized a few times, a few of my friends organized a benefit dance for which proceeds went to the CF Foundation in my honor.

My parents have always been realistic and taken things as they come. They remain optimistic throughout. We just focus on the things we CAN control. Recently, when I was told I needed to move down to Durham, my mom immediately started looking for apartments and making arrangements. They always try to make sure my health is as good as it can be, so that means cooking for me all the time when I am too sick to do anything so I can maintain nutritional intake. They’d always comfort me by saying, ‘Let’s take it one step at a time’ and, ‘We will get through this.’ I couldn’t do it without them.

After my first year of college, during a pulmonary exacerbations of infections, my doctor stated, ‘It’s time to consider a lung transplant.’ Those words, uttered from my pediatric CF doctor 8 years ago, made me instantly think about all the joys of life I hadn’t gotten to experience yet. Not only was I terrified of dying, but I was also afraid of dying before I had started living. I was scared of departing while not having lived the life I wanted. This was the lowest point in my life.

Courtesy of Ella Balasa

I’ve seen articles and videos where they interview elderly people on their deathbeds who are asked what they regret in life. Most people regret not having lived passionately, fulfilled and happy. I believed I would be one of them if I didn’t make a change.

It was a slow transformation, but I started to tire of the feeling life was passing me by, and I wasn’t living it the way I wanted to. I became more open about CF with my peers and found others dealing with similar challenges within the CF community. In college, after I had decided I no longer wanted to live a life of being intimidated by my own perceptions, I started to open up to others. Along with some of those conversations came questions about my health, and I could feel myself becoming more confident and comfortable sharing. I quit worrying about what someone might think of me.

After graduating from college and not being able to work full time, difficult emotions arose within me. I started reaching out to others in the CF community to learn how they dealt with similar challenges and I began finding satisfaction from these interactions. I was talking to people who truly understood me. Even now, that’s what fuels me. Some of the CF people I’ve met have become very close friends. When we are honest and open with others, they feel comfortable to share intimate parts of their lives as well and it’s what creates stronger bonds and friendships.

Courtesy of Ella Balasa

I also advocated for myself with my doctors and helped to educate both those in the medical field and strangers about the disease. I got comfortable in my own skin. I started accepting who I am, and I wanted to share it with others.

Fortunately, the lung transplant program doctors at the time still thought I had some life left in my lungs. It’s been 8 years since the first transplant referral and I am still hanging on with my native lungs. But I know it’s not forever and that’s ok.

A few years ago, I began writing to inspire and motivate others, and it’s made me feel satisfied. I’m able to express the words I can’t exactly think of when I want to speak. It brings me a sense of accomplishment and satisfaction.

Courtesy of Ella Balasa

My writing really stemmed from the experience of the difficult time in my life when I realized I simply could not work full time. My first piece was a pained and confused reflection of being stuck in a position where my body was starting to fail me but ambition kept me trying to reach the next rung on the corporate ladder. I decided to turn down my first big girl job a year after college. Having cystic fibrosis, my life had other plans, and keeping up with others wasn’t in the plan. At the time, already only having 30% lung function, I wouldn’t be able to maintain 8+ hour work days and keep infections away to stay out of the hospital.

In our society, so much emphasis is placed on the origin of our success through our careers, and I felt this pressure as well, despite being aware I was someone with a chronic illness who didn’t know what even the next few months might bring. Whenever we meet a stranger, one of the first questions we ask is, ‘What do you do?’ It was one of the hardest decisions in my life to quit, feeling I was giving up a part of my identity because I would never have a concrete answer.

I vowed to find my success in other ways, but I didn’t know what it would look like, or whether I really would find it. Little did I know, the first article I ever wrote, when all I wanted to do was vent frustrations and reach others who may have been going through the same things, ended up igniting a passion for writing which has provided me fulfillment and other opportunities to use my skills and degree simultaneously.

Courtesy of Ella Balasa

I often receive very touching messages from individuals who have read some of my articles online and tell me how much it resonated with them. They tell me I’ve described it so eloquently and they want to share and thank me. I’ve been told, ‘You have inspired me to find the light within my depression,’ and have shared their own journey with CF because of seeing my strength and vulnerability. I’ve heard from others with low lung function or who are close to transplant confide in me about their fears. They’ve asked for advice on how I’ve dealt with the emotional aspect of being too sick to live lives as they once envisioned. I have been thanked for being a voice for the CF community and a pioneer in pushing for novel treatments like phage therapy to combat drug-resistant infections. These interactions bring me so much fulfillment and happiness in knowing what I do is positively impacting people’s lives, many of which I am probably not even aware of!

As time has passed, some of the microbiology work I have done has had intersection with CF, as common infections in CF lungs and antibiotic resistances they acquire are also commonly found in the environment. Having this background knowledge has allowed me to explore and understand CF research and be involved in various research related advisory committees tasked in providing patient perspectives on research questions as well as working with researchers and professionals.

Courtesy of Ella Balasa

My background in science and my self-advocacy efforts paid off about a year ago when I became very ill with the worst lung infection I have ever had. I was using supplemental oxygen constantly, my lung function was 18% and it was even difficult for me to take a shower because of how short of breath it made me. I was coughing constantly and producing thick green mucus for weeks, despite being on intravenous antibiotics. The antibiotics had stopped working and my infection had become completely antibiotic resistant. That’s when I knew I had to try something else.

I needed oxygen pumped into my nostrils at all times to breathe. I was afraid I was dying. In the days leading up to get a new therapy, I was anxiety-ridden because I didn’t know if I would be able to make the eight-hour road trip to receive treatment. I was terrified my immune system was too burdened and I would be so vulnerable that virtually anything, from an allergic reaction to severe lung bleeding, could go wrong. I desperately needed to try something different. Yet again, my parents were an incredible support system. My mom drove the entire way to Yale the day before treatment as I sat in the back seat, sleeping and doing breathing treatments the whole time. She was very scared but stayed strong, reminding me, ‘Take deep breaths and stay calm,’ when the anxiety/panic would wash over.

I had heard about this experimental treatment called phage therapy (a newer treatment to fight infection in the lungs). In early January of last year, I traveled from my home in Richmond, Virginia to receive this treatment at Yale University. The treatment worked, and even today looking back, I don’t think I would have been able to clear that terrible infection without this intervention.

Courtesy of Ella Balasa

Despite my relief in symptoms, my lungs remained very weak and I was referred for transplant once more. This time, I relocated to Durham, North Carolina, to begin the transplant process at Duke University. For a few months every weekday, I exercised for pulmonary rehabilitation for 3 hours a day and attended transplant classes to learn about what my life would be like after surgery. After a few months in the program, I was granted ‘compassionate use access’ to a new drug called Trikafta which treats the underly cause of the disease. This would relieve me of the burdensome symptoms of constant thick green mucus, and gave me the ability to breathe just a bit deeper. In a short period of time it changed the trajectory of my transplant journey and once again the doctors decided I had recovered enough to put transplant on hold for a while longer. I moved back to Richmond just last month.

These days, I still feel the effects of my disease more than even two years ago, but with Trikafta, and my willpower to focus my daily efforts on treatments, exercising, and nutrition, I hope to push through more years without needing a transplant. I have an even greater will to go on and to have an appreciation for my life, for however long I have it. My next big adventure will hopefully be next summer when I visit my family in Hungary and attend my cousin’s wedding.

Courtesy of Ella Balasa

I want to reassure those dealing with difficult circumstances and complex obstacles outside of their control, to keep looking for ways to feel accomplished and motivated. For some of us, the inability to plan for our careers or our futures in general can be viewed as negative, but it can also allow us to pursue avenues we never thought possible.

Don’t be fearful to love to the fullest, to be bold, speak your mind, and let others experience who you are. I fight every day for one more breath, or to accomplish just one more thing. Living, that’s my motivation.”

Courtesy of Ella Balasa

This story was submitted to Love What Matters by Ella Balasa of Richmond, VA. You can follow her on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more amazing stories of living full lives despite Cystic Fibrosis:

‘It was the call! I ran into my sister’s room, swung the door open. I was joyfully yelling, ‘I got the call, I got the call!’ She thought there was a fire. ‘Whats going on?!?’

‘Are you scared?’ she asked. Breathless, I whispered to my mom, ‘No. It’s time to rally.’ I was so close to death.’: Woman with cystic fibrosis ‘in awe’ after gifted new lungs on verge of death, ‘the kindness of a stranger saved my life!’

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