Healing While Waiting for Transplant

The hard part

I’ve heard that waiting for the transplant is the hardest part. Every day after my transplant, I heard, “This is the hardest part,” leaving me a firm believer in relativism and forever poised for future “hardest parts.”

When I went on the heart-lung transplant list, I didn’t know if I would survive the wait for donor organs. My health was declining at a rate I’d never experienced in my 17 years with severe pulmonary hypertension (PH). I woke up knowing each day might be my last and fell asleep questioning whether I would wake up.

Born with a prognosis that I wouldn’t live to attend high school, I always struggled to plan for a limited life, balancing the temptation to accept medical expectations with my desire to set similar goals as my peers who weren’t battling chronic illness. When college became particularly demanding, I considered giving up. “If this is my last year alive,” I thought, “do I really want to spend it shut in a concrete tower of architecture studios?” Instead, I graduated with a degree in a related field that allowed for fewer dizzying all-nighters.

Waiting for a transplant was a new version of my indeterminable life, with additional limitations and unanswerable questions. The four-hour radius my transplant center gave me was less limiting than the nasal cannula tethering me to my oxygen concentrator. Walking a block made me light-headed and climbing the stairs to my room left me gasping for breath.

Feeling sick and tired — sick and tired of waiting. (Photo by Kathleen Sheffer)

After canceling several trips I’d scheduled before my hemoptysis event, I was hesitant to make new plans, however small. I met a friend for coffee the day before I got the phone call offering me my new heart and lungs. We discussed meeting again soon, but I couldn’t commit. “Maybe I’ll have the transplant tomorrow. Who knows!”

The transformation

I kept a journal during this period: “Now I’m in purgatory waiting for transplant and no one has any idea when I will get the call,” I wrote. “Could be tonight; could be two years from now.” Fully charged and ringer at full volume, I knew my phone might never ring. I had to consider how I wanted to spend my last days and the legacy I would leave.

Coughing up bright red blood into my friend’s toilet bowl in Seattle, I believed I would die on the cold, tiled floor. In that moment, I cared little about the places I had yet to visit, and the milestones I had yet to reach. I cared about the impact I had made on other people and words left unsaid.

Immobilized by an unknowable future, the wait for transplant gave me time to cover emotional distance. I sorted through past traumas to get to the root of my fears about going into surgery. I had candid conversations with my caregivers about what I wanted in the event of my death. Most importantly, I expressed my love for my family and friends.

A drawing I finished eight hours before receiving my call for transplant. (Illustration by Kathleen Sheffer)

Though I moved in with my parents and away from my local friend circle while I waited, friends from all over the country began reaching out. A friend with whom I’d only spent one week at summer camp quickly became my closest confidant, our friendship existing through text messages and care packages until five months after my transplant.

Reading and writing were chores I did just to get by in school. Unable to do much else, I embraced the two as a distraction and creative outlet. I read memoirs with the idea that I might write my own in the year I anticipated waiting for a donor.

Twenty-eight days after listing, I got the call that ended my wait. In the almost 14 months since my transplant, I read 29 books, started a blog, and had my writing published by The Mighty and Pulmonary Hypertension News (obviously). Watching my health improve for the first time, I can plan for the future like I never dared before.

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Note: Pulmonary Hypertension News 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 Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.