I didn’t choose to have a double-lung transplant; I chose to live
It's a startling reality, but without the surgery, I would have died
I would have died without a double-lung transplant.
Those words still send chills down my spine. It’s surreal that my story could have turned out differently. I try not to dwell on it, but sometimes my eyes sweat with emotion while reflecting on that truth: I was dying before my transplant.
I was born with cystic fibrosis (CF), and the lung disease was always aggressive. My days consisted of breathing treatments and airway clearance as I fought to breathe through thick, sticky muck that clogged my airways. I had to conserve energy because of how much it took just to breathe. I was stuck in survival mode.
I struggled with mental health symptoms. Not that I need to justify it, but my anxiety was warranted. I had trouble breathing because of my CF lungs, which triggered anxiety that I wouldn’t be able to catch my breath, might pass out from a coughing fit, or would die in my sleep. I suffered from depression on the regular. It was heartbreaking when I desperately wanted to do so much, but my body said no, and I was forced to listen. It also didn’t help that I had the average CF life expectancy constantly drilled into my brain.
In 2017, I went into respiratory failure. Six weeks prior to my transplant, the intravenous antibiotics stopped working and I grew sicker. My lungs were filling up faster than I could cough and spit out the mucus that was drowning me.
The call for new lungs came at just the right time.
My surgeon showed my parents a picture of my CF lungs, which were badly beaten by the disease and worn down from countless respiratory infections that scarred my airways. Based on how weathered my lungs looked, I didn’t have much time left, the surgeon explained.
“We didn’t know how you were breathing,” my parents said. Apparently, my upper lobes disintegrated as they were removed from my body during surgery. The rest of my lungs weren’t much better.
It’s startling to think about what could have happened if I didn’t receive the call for new lungs when I did. I don’t think I’d still be here to tell my story.
Thank God transplant was an option for me.
Debunking the myths
I didn’t choose to have a double-lung transplant. Some people believe it was an elective surgery, so let me rephrase: I chose to live, and the only avenue available was to get new lungs. My CF lungs couldn’t sustain my body any longer; they were failing. I was at the mercy of modern medicine and a selfless stranger’s decision to donate their organs when they died.
It can get frustrating when people make assumptions about my life. On days I’m well rested and have had enough coffee, I can respond with grace. On other days, it’s hard to converse with able-bodied individuals who refuse to believe that my lived experience is real.
My approach to life has drastically shifted because of everything I’ve been through. I no longer pretend that I know what people have endured if I haven’t experienced it firsthand. I want to hear about your own personal experience.
Assumptions are corrected through education and conversations about things we don’t understand. Allowing people to tell their stories is not only how we learn and grow, but also how we give others a voice to share their perspective.
Perhaps the world would be a kinder place if we chose to listen more than we spoke and appreciated the life we’ve been granted — no matter the cost.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
About the Author
Tim Blowfield
Thank you, Lara. I am glad you chose life. When the alternative was a dead end. And now you are using your life to help and encourage others.
I am interested to hear of what teh faulty CFTR gene is doing in the rest of your body. It s widly report as causing intestinal and pancreatic dysfunction but we also see pwCF with many other 'co-morbidities' often affecting organs which are not mucous excreting. Endocrine dysfunction, CFRD, hypokalaemia and Addisons Disease and Osteoporosis are commonly reported. Heart disease is not uncommon and Mental illness too common.
Trikafta and other modulators have been used in some persons who have had lung transplants but the benifits have not been well publicised. Many who have not had transplants have reported benefits beyond their lungs.
Lisa
As a mom who watched her daughter a year earlier go through the same challenges waiting for transplant I can't imagine what you felt. My daughter was 18 and spent most of her senior year of high school between Boston Children's and UVM. She spent 6 months on the transplant list and 32 days on ECMO. We were very fortunate that she received the gift of lungs but like you she chose to live. She is living her life to the fullest and making the most out of those new lungs! Best wishes as you share your story.
Steven Ferkau
Lara, I’ve watched you on social media for many years. You are an amazing human being. The way you help others is truly beautiful. My mom always drilled into her kids that her goal in life was to leave the world a better place than she found it, when she was through with life here. I think I can safely say that the world is a better place because you are here.
In April, I’ll be 24 years post double lung transplant (cystic fibrosis, like you…) and 12 years post kidney transplant (a living donor gift given to me by one of my lung donor’s friend & neighbor.) With all my heart, and my lungs and kidney, I hope that you double however many extra years I get on this planet. Love, Steve Ferkau