“‘What are you going to do with this one wild and precious life?’ – Mary Oliver.
This has become my life verse that keeps me focused on what matters most. Never in a million years did I ever think I would get to choose what to do with my life…twice.
Born with a genetic disease, Cystic Fibrosis (CF), my health has been a source of struggle since birth. It’s the only life I have ever known.
A quick synopsis of CF: my body lacks the essential salt content to move secretions properly throughout my system, thus producing thick, sticky mucous. It builds up in the lungs and pancreas, primarily. With mucus clogging my airways, it was a challenge to breathe because I was always congested. With exertion, I became short of breath faster than everyone around me.
My life was filled with daily breathing treatments that consisted of nebulizers and airway clearance, and in later years, oxygen. It’s important to note that each case of CF affects the individual differently. My lung disease was extremely aggressive. Even though I was the most compliant patient with my treatments, medications, and doctors’ visits…this was not enough to save my tired lungs.
Mucus is a breeding ground for bacteria which led to my inability to fight infection without medical intervention. An abundant production of mucus built up in my airways. Through years of repeat respiratory infections, each one left my lungs scarred. Struggling to breathe through buckets of mucus caused my lung function to dwindle to the upper 20’s (percent) range. The only hope for saving my life was a double lung transplant.
I was admitted to the ICU at my home hospital in Vermont with respiratory failure on 55 liters of oxygen. A few days later, I was transported to Boston where I was urgently listed for a double lung transplant at Brigham & Women’s Hospital. The first day there in ICU, I distinctly remember a conversation with my sister Jacie:
‘Are you scared?’ she asked. ‘No, not at all,’ I replied. ‘I honestly have the better end of the deal here. This part is easy, your position is way tougher.’ To this day she still says, ‘I don’t know how you were laughing when all I wanted to do was cry.’ The truth of the matter is that I wasn’t afraid. In fact, there wasn’t a moment I doubted if I would make it or not. I believed with my whole heart I would live. I clung to that truth for dear life (all puns intended). Flooded with peace and sprinkled with joy, laughter often filled my room.
A few days later, I was the closest to death I’ve ever been. Waking up that morning, I was fighting for breath at rest on 55 liters of oxygen. Something wasn’t right. I couldn’t catch my breath no matter how hard I tried. Being so short of breath, I had to write to my mom because I couldn’t talk. Doctors set a plan in motion to intubate me and put me on ECMO. They left my room to move forward with the plan.
Breathless and fearless, I whispered to my mom, ‘It’s time to rally.’ I can’t describe the strength I had that day because medically it doesn’t make sense. I felt this divine presence set my sight on winning, not doubting for a moment I would pull through, determined to stay alive. By the grace of God, within a few hours, I was talking, laughing, and breathing again. ‘I guess we don’t need to move you back to the ICU,’ all the doctors said, mystified. ‘You’re damn right you don’t,’ I retorted with a grin of victory.
Six weeks leading up to my transplant, I was inpatient at the hospital. Usually, after two weeks of antibiotics, my lungs were clear enough to go home. This time, however, I was getting worse. The meds had stopped working – time was running out. In this season of my life, I was continually rung through the refinement process. Layers of past hurts, failures, and mistakes broke off my heart. I conditioned my mind to be strong, rooted in truth, deflecting the lies that I couldn’t do this. Every night I went for a prayer walk around the hospital grounds, allowing inner healing to take place in a deeply profound way. Lots of divine appointments occurred during this time that don’t make sense.
But God, it was a magical season that will always hold a special place in my heart. Later, I reflected on how it was training ground for what was to come. The call came at just the right time to save my life. I remember doubling over, nauseous with the news I had just received: they had a match for lungs. They needed me to be transported to Boston immediately. After getting off the phone with Brigham, I crouched down by my hospital bed struck with the magnitude of the situation. As prepared as I was, nothing could get me ready for this moment. I didn’t feel ready.
I was overwhelmed with thoughts of my donor and what his or her family was experiencing in those moments. Hit by what my own family and friends were feeling. My hospital family filtered in and out of my room, holding me while I cried. Reminding me of who I am, that I could do this, and keeping my goal in the forefront of my focus: to live. Five short months after being listed, on August 18, 2017, my life changed forever when the kindness of a stranger saved my life by giving me new lungs. I wouldn’t be here without this incredible gift and I am still in awe at the life I get to live each and every day.
Looking back, CF only took up a small portion of my life until I was nineteen. Growing up, nobody knew that I had CF. It was the generation that never talked about it. I attended school, participated in sports, and had a seemingly ‘normal’ life. My parents chose this path for me because kids are cruel to begin with, and they wanted to prevent bullying for something that was beyond my control. I’m forever grateful for their decision.
I went away to college for six years – obtained my Bachelor of Arts in philosophy, with concentrations in nonviolence and business administration. Next, I tackled a Master of Science in education, with concentrations in mental health and school counseling. I still have no idea how I juggled the full-time job of taking care of myself with CF, going to school full time, working full-time through my master’s degree, and somehow balancing a social life.
Life got tough in my late twenties. No longer able to fight respiratory infections on my own, I would have to be hospitalized for a minimum of two weeks for aggressive airway clearance and IV antibiotics. Every time, I had to drop everything and be admitted. Putting my life on hold, I felt defeated. Constantly striving for an unachievable goal of being healthy with failing lungs was exhausting on not only a physical level, but also a mental, emotional, and spiritual level.
Throughout my life, I have struggled with anxiety and depression. It’s not all the time. It’s not every day. But it hits in waves when I least expect it. With all the traumatic events that have happened throughout the course of my life, I struggle most with PTSD. Flashbacks crash over me with a force I can’t conquer on my own. Panic attacks that take my breath away. Nightmares that rouse me mid-sleep. And functioning in fight or flight mode constantly. The emotional rollercoaster of almost dying so many times, hospitalizations, procedures, surgeries, of having my chest sawed in half, my lungs scooped out, a stranger’s lungs sewn into my chest cavity…Fluctuating from grief to gratitude, sometimes in the same minute. It’s not always easy.
Transplant comes with its own set of complications, essentially trading one disease for another. My immune system is suppressed on purpose so I don’t reject my lungs. Due to this, I often wear a mask in crowds. It’s a small price to pay for being alive. Through years of personal growth, mentorship, and developing a relationship with God, I learned how to use my circumstances to become better, not bitter. Rubbing noses with death afforded me the opportunity to peel back all the layers and walls I had built around myself for as long as I could remember, walls that kept people at an arm’s length.
Getting to the root of who I am has been the best gift that my circumstances have granted me. I’m more me than I’ve ever been. Digging into my purpose has set my soul on fire. And I’ve finally learned how to love myself for who I am as a person, without my identity being attached to people, a career, or something outside of me. My family, friends, and even strangers have been the biggest supporters of my journey. I have been blessed to have a core group of people who have never left my side and I know they never will. My parents are the most selfless angels to walk the planet. My mom, a precious woman, relentless in her love and care for others, after spending the majority of my hospitalizations sleeping in a chair next to me, said during my transplant: ‘It is an honor to be with you and there’s no place that I’d rather be than by your side.’ My dad, a quiet, not outwardly emotional man, but inwardly the kindest hearted individual ever, told me: ‘Don’t worry about anything, all you have to worry about is getting better. That’s all I care about. Leave the worrying up to me.’
The truth of the matter is that we all have our ‘stuff’ that we are dealing with. It often looks different than your neighbor. Given this mindset though, it allows us to see others through eyes of empathy. Something that connects us is our human desire to be loved, accepted, and belong to a community of individuals rooting for us. Almost dying so many times left me with the most valuable life lessons:
I cut ties with toxic people, those who didn’t have time for me, and the ones who couldn’t hang out in my storms. The doors opened up for deep, meaningful relationships in all capacities. Now, I choose who I allow into my life very wisely. There are few who get access to my time…those who love, support, and encourage me are all in. They add to my life, not suck the life out of me. There’s nothing worse than wasting time with the wrong people. Life is too short to spend your life with those who don’t appreciate you, see your worth, or treat you the way you deserve. Honestly, we all are living on borrowed time. None of us are promised tomorrow, even those who have a few more odds stacked against them. It is up to you to make a difference with the time that you have been granted here on earth.
The strongest wisdom that I developed is this: if your mental, emotional, and spiritual health are strong, then you can conquer anything physical. That’s the easy part. I also learned that if you truly believe in something, there is only room for Plan A. You spend your life figuring out ways for it to happen. If you make a Plan B – you don’t fully believe in Plan A in the first place.
You have to chase after what you want and make it work, no matter what. You have the power to choose to be a victor, not a victim. You either decide to rise up or back down. My life now consists of traveling on a whim, visiting my loves all over the country, and adventuring on the regular. My days are filled with hiking, exploring, and chasing sunsets. Hanging out with those who share a zest for life, I get to experience more than I ever thought possible. Life on this side of transplant is completely different, I have never breathed this effortlessly in my whole existence. I am literally living the dream. Completely reveling in my new life, these moments are so delicious. The most beautiful gift my journey has afforded me is to say with whole-hearted truth that if given the choice, I would choose my life. Every time.”
This story was submitted to Love What Matters by Lara Govendo. You can follow her journey on Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
Read more amazing stories about people living with chronic illnesses:
‘The nurse checked if my skin was salty to confirm her suspicions. She was right. I came out of the hospital and immediately changed my job.’: Woman diagnosed with ‘life-threatening’ Cystic Fibrosis, ‘I couldn’t be more alive’
‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’
‘By the time I clock out and leave tonight, I will have been in the building for 14 hours. 3 as a patient, and 11 as an employee. This is invisible illness. This is dysautonomia.’
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