In spring 2015 I began journeying toward a challenge I hadn’t known would come to fruition so quickly: lung transplantation. Concerned for my life, my care team had labeled my cystic fibrosis “unmanageable.” Blinded by my inability to admit when I was sick, I couldn’t realize that truth. Wanting to accomplish all I could before another hospitalization, I pushed my limits, burning through the last dregs of my energy. Halting my life in its tracks for treatment and recovery left me feeling helpless, frustrated, and ashamed.
I began evaluation for a double-lung transplant even though, at the time, I wasn’t “that bad.” Categorizing transplant as “Plan B,” I continued working as a mental health therapist for children. Various health complications, including blood clots, finally forced me to resign from my beloved job. I finished transplant evaluation in August 2016, still confident the surgery wasn’t a close reality. My health was stable enough, so joining the waitlist was put on hold.
As work and relationships were stripped from my identity, I continued to find new meaning in that season of life. I found therapy in nourishing my personal growth, diving deeply into spiritual practice, and writing. Health-wise, I was in freefall, yet continued resisting the reality that I had no control.
At least, until I plummeted into respiratory failure.
The precipitator is still unknown to this day, but I met my downfall in March 2017. Fed the highest possible flow of oxygen before intubation, I fought for my life harder than ever before. Doctors stuck me in the ICU for the first time — it was scary not being on my usual hospital floor. Later, I was transported to Boston to be emergency listed for new lungs.
Resistance is futile when barely able to move. Frustration threatened my mental and emotional stability, and anger got in the way of channeling energy where it was needed most. In that struggle, I released the illusionary reigns of control, handing over the battle to a force far greater than me. During this time, I felt a radical, divine presence. Peace washed over me; joy filled me and I fully surrendered my life to God.
Miraculously I bounced back to needing only a few liters of oxygen. I waited for months, mostly while inpatient, on the transplant list. While waiting, I focused on inner healing, writing almost every day about my emotional rollercoaster. My parents and sister took the best care of me, my nephews cheered me up during hospital visits, and friends filled my room with belly laughs. I was my most authentic self, having real conversations with loved ones about what mattered most.
After five months on the waitlist, I got the call. My transplant was almost exactly a year after I finished my evaluation — August 18, 2017.
Post-transplant, I’ve shifted my mindset from what I “have to do,” to what I “get to do.” Everything on this side of transplant feels like a gift. Hiking, kayaking, and mountain biking are activities I never dreamt possible, but now I do these on the regular. Traveling with ease is a whole new level of living. And running with my nephews is exciting every time.
Breath is something that most take for granted, given its innate nature. You’ll find a different perspective in those who once struggled to breathe. Taking slow, deep breaths never gets old for us. When I wake up each day I thank God and my donor for another day filled with deep breaths. Reveling in the magic of days without airway clearance paints a giant smile on my face.
I’ve been transformed through the seasons of waiting, having a transplant, and now using my new lungs. I’m now the person I’ve strived to be my whole life. Facing death so many times changed me in the best of ways. Transparency, authenticity, and true connection with others are essential for how I live my life. It’s ironic that facing death teaches us how to fully live.
One of my life verses, from Mary Oliver, is: “What is it you plan to do with your one wild and precious life?” It reminds me of how fragile and fleeting this life is. You’ll know you’ve grasped this truth once you begin living life to the fullest, pursuing passions, making a difference, and filling it with people that value you.
Transplant has changed how I breathe, interact, and live. While I don’t want anyone else to need a transplant, I would not change any part of my life story if given the choice. My life story is a gift from my donor, and I honor them with how I live every day that I am granted.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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