by J. D. Netto
I shared Dr. Kupo’s diagnosis. Every word coming out of me squeezed the vise around Sawyer tighter.
“Paul,” she said as soon as I was done. “I’m not sure what on earth those people are thinking. You need a transplant! The Fontan revision will kill you.” Her voice was as sharp as steel.
“What do you mean?”
“A healthy heart should help your liver break down protein,” she explained. “The oxygen flow from a new heart would heal your liver. The revision won’t.”
Silence.
“Can you come in for a few tests tomorrow afternoon? I need to check your heart and liver.”
“I think so,” I replied. “My wife will be home. She might be able to drive me.”
“Perfect. Can you come at two?”
“Yes. I’ll call if anything changes.”
“See you then,” she said, followed by the dial tone.
My eyes followed the oxygen tube connecting me to R2D2. It was to my left, snuggled up against the wall beside my piano bench. The buttons and lights on its surface mimicked staring eyes. I didn’t want to spend the rest of my life plugged into a machine. And it sounded like my best chance at freedom was to risk the wisp of life I still had left.
Olivia drove me to the hospital the next day—along with another version of my oxygen machine. It was the portable model that got to leave the house with me. It had two wheels and two metal legs that stretched outward. The top of the silver cylinder was green, serving as support for the regulator, pressure valve, and flow meter. From it stemmed a metal handle, its tip warped into a black handlebar. I had it between my legs in the front seat.
I lost my breath when I spotted the white letters spelling Primary Children’s Hospital. They were suspended above three round columns, surrounded by tinted glass windows.
Here we are again, I thought.
Olivia helped me with my oxygen cylinder as I stepped out of the car. Walking through the doors wheeling my oxygen source actually made Sawyer skip a beat.
The front desk was the same as it was twenty years ago, with the exception of a few crayon drawings hanging on its edge. The painted mural on the wall behind it depicted children playing in a park; it looked like some of its colors had been retouched throughout the years. My eyes scanned the drawing, catching on the girl sporting a yellow shirt and a wide smile. She reminded me of someone I hadn’t thought of in a long time, a fellow patient and faithful companion during my recovery after the Fontan. She would visit me every single day, and her presence was one of the few joys I had while cooped up. Her name was Stephanie.
Being back was like walking into a distant nightmare.
We were led to Dr. Brown’s office a few minutes after we arrived. I stared at the canvas behind her desk and took a seat as we waited. It displayed a brown moth with its wings spread out, the two circles on their surface giving the impression the creature had eyes there.
Olivia observed the moth as well, face rigid. I laid a hand on hers and said, “It’ll be alright.”
She replied with a halfhearted smile.
Dr. Brown walked in, fixing her white coat as she rounded her desk.
“It’s a pleasure meeting you in person,” she said as Olivia and I stood to greet her. “I have a good feeling about this.” She shook my hand.
“At least one of us does,” I said behind a sigh and pointed to Olivia. “This is my wife, Olivia.”
“Pleasure.” She shook her hand and took a seat. “Sorry it took me a while. I have to say, I’m glad your medical file is now on the computer. It’s pretty long.” She smiled.
“The bible of all medical files,” I joked.
She highlighted a few facts that stood out to her. My heart being enlarged. My right lung being crushed. My liver failing. She insisted the transplant was the safest option. She analyzed my face after she was done presenting the facts that supported her claim. I picked up on her quick glance at the oxygen tube connected to the cylinder next to me. She crossed her hands on the table. “I’m going to request a few x-rays and ultrasounds today. The tests should confirm my theory.”
“You do realize the weight this puts on our family, right?” Olivia’s face remained rigid. “His old doctor says one thing. You’re saying another.”
“Well, eventually a decision needs to be made,” said Dr. Brown. “I’m his doctor now. And from everything you said, he needs a fresh reboot. I do want to wait for the test results so we can be completely sure, but I stand by what I said.”
Olivia and I exchanged a glance.
“Can I make a decision after the test results?” I asked.
“Absolutely. Let me go speak to the nurse so we can get everything ready.”
She exited the room. I followed the patterns on the outstretched wings of the moth. I knew they didn’t pose a threat, but I bet all moths secretly wished to be butterflies.
Dr. Brown returned and asked me to follow her, informing Olivia we’d be back in about half an hour.
She led me to another private room where I was left with an EKG machine and an ultrasound tech. I was familiar with the equipment. It could show how fast—or slow—my heart was beating. But one thing I was never going to get used to was taking off my shirt in front of them. The aftermath of all my medical procedures had turned me into a broken gallery. Aside from the scar collection, my shoulders had turned inward, and my chest sunk in a bit. I’d always joke with my techs, saying I was actually a centerfold model and had the staples to prove it.
The tech applied pads to my skin that connected to the wires spilling out of the computer. They ran several tests before I was led back to Olivia. I was told to come back the next day for the results.
We returned as requested. The picture of the moth held my attention until Dr. Brown entered the room. Sawyer pounded faster and faster as she walked to her seat. He seemed to be trying to beat at the pace of her steps. Olivia was nervous, every noise and murmur seemed to put her on edge.
“I have good news,” Dr. Brown revealed. “The results came back, and everything points to the transplant being your best option. Like I mentioned before, a healthy four-chamber heart will fully restore liver function and strengthen any organs struggling to keep up. It might be a risky procedure, but there’s a good chance of it working out.”
Olivia smiled. “So, he’ll make it?”
“Mrs. Cardall, I can’t downplay the risks. The amount of scar tissue that has built up over the years will make it challenging. But the odds of the transplant are much better than those of the Fontan.” She cleared her throat and turned to me. “And there’s something else; testing did confirm your liver is worse. If we don’t get that liver healthy, the chances of you living without a transplant are slim.”
Olivia took in a sharp breath. “The choice is yours, Paul.”
I locked eyes with the two circles on the wings of the moth. “The transplant it is.”
After meeting with Dr. Brown and the transplant team on August 22, I received my pager and was listed as a recipient.
Doctors always talked about getting listed for a transplant as something hopeful. And it was. But you don’t really think about it until you’re in those shoes. Thousands wait for their chance at a new heart.
I was to take a sabbatical from traveling outside of Salt Lake City since the call could come in at any moment. They explained the pager could go off within the next two months up to a whole year. But once it did, I had a one-hour window to get to the hospital. I was also instructed to avoid as much human interaction as possible because another infection could end my life.
I started journaling my experience on my computer while waiting for a heart. I wanted Neil to know the story from my perspective, in case I left this world when Sawyer did. But with each entry, I thought about the millions of people who had no idea what waiting for a heart actually meant. I had something in my han
ds—an experience that could inspire so many. The words Mrs. Dominguez spoke to me the day I almost fainted at school came back to me, “Take control of your story. Tell it in your own words. The world will never be able to rip it away after you do.”
I felt like it was my duty to share the ups and downs of the coming months—or years—with the world. I already had an audience, and they had the power to snowball this whole thing. They knew my music, but I wanted them to know my story as well.
I decided to take my entries and post them on a blog. I consulted with Olivia before uploading the first one. She was reluctant, claiming she didn’t want our lives and family exposed to strangers. She also pointed out that making this public could potentially expose the donor of my new heart—when I eventually had one. I proceeded to make the account public despite her concerns,. She’ll eventually understand, I thought.
An Unexpected Visitor
AUGUST 1987
My temporary address became the Pediatric Intensive Care Unit inside the Primary Children’s Hospital. After my Fontan procedure, I couldn’t help but picture a massive fountain gushing out blood instead of water whenever they discussed it with me. I eventually learned it was named after the guy who invented it, Francis Fontan.
My hope of leaving after a few days was dashed when they told me the pacemaker they installed in my chest didn’t work properly. The culprit: Sawyer’s anatomy. The result: They had to pry me open again and move the pacemaker to my abdomen. Sawyer lacked the proper veins to thread the pacemaker’s wires—or leads—into place. The leads are responsible for delivering energy to the heart so it can keep beating. By moving it to my chest, they could transfer the electrical signal through the outer walls of Sawyer’s muscles. They were held in place by literally screwing the leads into the heart. Fun stuff.
The day before surgery was a nerve fest. I didn’t want them to open me up again. But it wasn’t like I had a choice. The scar on my chest was doomed to become a secret passageway doctors would use to reach Sawyer whenever he needed fixing. The future held so many more operations. I was only fourteen and was already tired of it.
They wheeled me back to the operating room. I knew pain waited for me, no matter the outcome. Whole-body pain that I knew well.
The bright lights above my head blinded me once I was on the operating table. I hated the temperature of the room, the little breeze from the air conditioning that sent a shiver down my spine. I hated the smell of iodine, flooding my senses from the freshly cleaned surface beneath me. The surgical team moved around quickly and knowingly as they prepared to open me up. None of them cared, or had time to hear, that I was terrified. I prayed in silence, words only God could hear. I wished for relief. Whether it came from death or Sawyer’s improvement, I didn’t care. I just wanted somewhat of a normal life.
The animals on the walls of my room had begun to feel like my pets. Seeing them whenever I awoke from surgery meant Sawyer had been a good boy. The clock on the wall marked the time: 6:15 a.m.
My parents walked in a few minutes later. Mom’s cheeks were puffed and red, matching the scarlet sweater she wore. Dad had his hands folded behind his back, chin high, face rigid.
“How are you feeling?” Mom’s chin trembled.
“I’m alright,” I said weakly. “Tired.” A groan. “Everything okay?”
They exchanged a worried glance.
“Paul,” Dad said and paused. “The doctor was speaking to your mother and me.”
My stomach churned. He seemed to be looking for the right words to break some bad news.
“Just say it, Dad. What is it?”
“One of the leads from your pacemaker fell off your heart while you were asleep.” He kept his eyes on me, probably trying to hide the fact he’d rather stare at the wall than at his son while breaking the news. “They’re going to have to operate on you again.”
My attention was on the window by my bed. An orange hue peeked out amidst the dark clouds in the sky, slowly revealing the mountaintops of Olympus on the horizon. Despair crashed like a tsunami; the first wave fools you into thinking things won’t be so bad but, in the blink of an eye, there’s a second, a third, and then you’re drowning.
“I’m done,” I mumbled as the dawn blurred behind my tears. “I’m tired. I’d rather die than live like this.” My gaze met theirs. “Tell God to take me away from this life. Whatever that means. Please.”
If Sawyer had a throat, seeing my parents’ suffering would be the hand that choked it. Mom tried to hold back her tears, but they eventually escaped. Dad’s frown remained intact, as if every wrinkle had a word to say. Determination suddenly replaced his sorrow. He sniffled and folded his arms like he always did when he was about to reprimand me.
“Paul, you’ll live a long life.” A smile. “You’ll see. And somehow, all of this will be for the greater good. Stop asking God to end a season you don’t understand yet. It’ll all make sense. Let science and the divine help you live.”
I listened to my Dad, not because it was what I wanted to hear, but due to the sheer amount of strength it must have taken in that moment to discipline me and shift my perspective. Seeing your kid in the situation I was in must be terrible.
My dad’s words were my anchor when the nurses showed up to wheel me back to the operating table.
The time was 6:45 a.m. I took in a breath to make sure I wasn’t dreaming. No, I wasn’t. I was about to press the button to call the nurse but was startled by a little girl standing next to my bed. She had a sweet smile stretching from ear to ear on her pale face and hair down to her shoulders. She couldn’t have been more than nine. I wasn’t sure if she stared with compassion or curiosity. Maybe she thought I was winning the tubes-coming-out-of-our-bodies contest. Mine flowed out of my mouth and torso like snaking rivers while her single tube spilled out of a hole in her neck.
She waved with a shy smile. I waved back. The tube in my trachea triggered a sharp pain as I attempted to smile. I scowled as my muscles went rigid. She laid a hand on my arm, probably noticing my struggle.
Our eyes locked. Dark circles spread around hers. We stared at each other as if our silence could offer up answers to our questions. What was her story? How did she end up here?
She left the room when one of the nurses came in to check on me. But her visits became a daily habit. I got to speak to her after my tube was removed. I was the only one to experience that relief. She still couldn’t get a word out because of the hole in her neck. She’d bring a whiteboard and marker to draw or try to write what she wanted to say.
I looked forward to seeing her every day. Her visits made me feel like I had someone that understood my struggle. Her mom came to my room with her one day. That was when I learned her name was Stephanie. They looked alike, sharing the same round green eyes and blonde hair. Her mom’s name was Patsy. She carried an envelope on the day she visited. Stephanie watched eagerly as her mom handed it to me. She grasped the bar handles of my bed, resting her chin on them, staring at me like I was a movie theater screen. The gesture was my signal to open the envelope immediately. Inside was a drawing of a girl in green scrubs lying on a bed covered with colorful flowers under a tree. The girl was comprised of a collection of sticks drawn with crayons, the yellow coloring her hair bleeding over her round face. My fingers trailed over the drawing.
Stephanie pointed at the girl on the paper and at herself.
“She wants you to know that’s her,” Patsy said. “She spent a few hours working on this.”
“I love it,” I said, my words stinging my throat—the pain a keepsake from the tube that had been lodged there. “It’s beautiful.” Maybe the emotion I could see leaking onto the page was her longing for paradise and relief. I studied her eager expression, wondering why I got to recover faster than she did. She was doomed to keep on wearing that thing in her neck like an unwanted accessory. While my scars were concealed, hers
were out in the open. As the days dragged on, my tubes were removed while hers remained.
She came to see me on my last day at the hospital, her sadness on full display. She wore a bright yellow shirt with a rainbow across the chest.
“Can I get a smile?” I asked, sitting on the edge of my bed in my blue jeans, my favorite white shirt Mom brought from home, and my Vans. She forced one, carrying a mixture of happiness and loss. “I’m going home today.” A clap followed my words. “And I can’t wait for the day when it’s your turn to go home.”
Her mouth trembled, struggling to say something. A breath was all she could manage. Frustration covered her face. She took a step back.
“Hey, we’ll see each other again,” I declared. “You’re going to leave this place and have an incredible life. It’ll be great.”
“Stephanie!” Mom emerged from the hallway. They had met a few days before. “I’m happy to see you here. Did you come to say bye to Paul?”
Stephanie nodded.
“That’s great, sweetheart.” Mom knelt in front of her. “Listen, when you leave, I want you to come to the house for dinner. How does that sound?” Excitement filled Stephanie’s face. “Good. We’ll see you soon, okay?”
Mom grabbed my bag and led me out of the room. I looked over my shoulder while walking down the hall. Stephanie waved at me, then stood rooted to her spot by the door until Mom and I walked through the double doors leading to the elevator.
As we crossed the lobby, I noticed a few artists painting a mural behind the front desk. The outline depicted a scene of children playing in a park, half of it already painted in bright colors.
As Mom and I walked toward the exit, I wondered if Stephanie would ever get the chance to play outside. Had her voice whispered to her parents that everything would be alright? Would she grow old?
A Light in the Dark
