Jan. 14, 2017 was the worst day of anxiety I’d had in the five months of waiting for my lung transplant. A frantic, nearly palpable tension was in the air. After five confident months believing the “light at the end of the tunnel” was rebirth, rather than death, I suddenly broke. I simply didn’t think I had the strength to make it to transplant. I refused to communicate with my parents most of the day (I was fully deaf, so communication took conscious effort), and I walked the streets of cloudy Santa Cruz in a cold sweat, shaking as much as the oxygen tank on uneven wheels that followed me. I texted my girlfriend that night and found she also had a bad-vibe day. We sobbed together.
I prayed intensely that night for quick relief, despite knowing the doctors estimated I’d be on the waiting list for lungs at least five to nine months. It had only been five weeks, and my spirit was already decimated. I didn’t only pray for a miracle transplant — I knew 20 people die each day waiting for organs in the United States — I prayed, “If it’s in the plan for me to die, let it be swift and let me be at peace with it.” What followed was the best sleep I’d had in five months.
What followed that, however, was a rude interruption at 1:30 a.m. I awoke to my lights being turned on, tore off my BiPAP mask, and whined at my parents: “What the frick, man? I was finally sleeping good!” What can I say? Dying makes you irritable. I assumed they turned on the lights to change my IV antibiotic dose. Instead, they were sitting on the edge of my bed, laptop between them. I already knew what was happening. I slapped on my glasses to turn bright, blurry whiteness into a gorgeous, glorious Word document:
My trembling heart was shoved into my throat. Eyes wide and glistening, I Facetimed my girlfriend. It was 11:30 p.m. where she was, in Hawaii, but she answered immediately. She knew what was going on before I could articulate the words — the words I’d once molded into poetry and fantasized delivering: “Th-they called. They have th-the lungs for me.” I gazed at her on that shaking phone screen and realized this certainly was the most poetic moment of my life despite my botched delivery.
My parents and I scrambled to pack our things. It’s advised that you always have a “go bag” when waiting for transplant, but we thought we had a solid four months before we could expect it. In the car, I experienced the peace I’d prayed for just hours before: a warm water submersion. It was the calmest I ever felt in my life, despite knowing I could be cut open soon (the lungs weren’t guaranteed to be viable).
It wasn’t hectic in the hospital once we arrived. We sat in a ward and awaited word. I didn’t bring my BiPAP with me, so I couldn’t sleep the rest of the night. Instead, I thought of my stranger donor, of his family — suffering in those moments.
I spent most of Jan. 15 eating cafeteria nachos and brown rice while writing out an unofficial will on my phone. I told my girlfriend where she could find it if the surgery went wrong. I demanded that my funeral be a celebration of life with comedy and a taco bar.
At 8 p.m., I was wheeled into the operating room. But not before snapping a victory photo with my parents. Everything could go wrong, but we laughed about how calm we felt. I hugged them, saluted them, and said, “See ya later.” The smiles in the picture are genuine.
For 2.5 hours, I lay on the frigid, hard operating table. Strapped down and unable to move even my head, I could only see the gigantic, blinding operating light above me and the occasional surgical mask as nurses moved about. I lay on that sticky sterile paper beneath the surgery hoods, swam in orange alcohol prep, and felt the stabs of catheters being inserted all around my body. Deaf, I sang “Hotel California” and some Christian music in my head. I wasn’t sedated yet, but I felt only the peace that had begun the night before.
Cystic fibrosis held me hostage my entire life. Someone called SWAT — and the UCSF lung transplant team answered. A surgeon wrote on a whiteboard that the surgery was “a go.” My last words? “Hey. You guys have fun, OK?” Written: “We will. Go to your vacation place in your mind.”
I felt a cool flush in my wrist. The light above was so bright.
It was bright when I awoke, too. A white paper reflected harsh lights into my eyes. It was the light at the end of the tunnel, and it was a rebirth.
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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