For the month of April, PCHA will be focusing on the theme of National Donate Life Month. In the third post of our series, Kathleen Sheffer, a heart and lung transplant recipient, shares her memory of the harrowing moments that came after the fateful call.
I didn’t stress about packing absolutely everything I needed because I believed it would be a dry run. Calls for transplants are never actually rehearsals, but they’re referred to as dry runs when, for whatever reason, the organs are determined unviable. Most transplant patients I knew had had at least one—one friend even entered the Operating Room (OR) before the surgeon called it off. I figured it was a rite of passage: I would go through the motions today, but I still had a long time to wait. Just 28 days on the list of transplant candidates and they had a match for me? Impossible!
I had imagined this phone call several times a day for the last month. After one too many heart-stopping calls from numbers with my center’s area code, I called my nurse coordinator to ask what sort of an introduction I could expect. She patiently talked me through the questions the caller would ask me and said they would make it clear immediately that this was not your standard appointment-scheduling phone call.
The phone rang at 7:50am and as soon as the first words were out of his mouth, I knew the man on the phone was calling to offer me organs. He rushed through the script, stumbling over some parts. I eagerly confirmed I did not have any cold symptoms and had not eaten since the night before. I informed him that I was a two-hour drive away from the hospital and he promised to have a bed ready for me at 10am. It went exactly the way my nurse coordinator had described it.
My heart was racing too fast for me to think clearly about what I wanted to bring. I shoved a few books and art supplies in a bag, grateful to my parents for handling the backup of medical supplies, so I could focus on the important things, like updating Facebook and locating the henna ink. My dad returned from work and my younger sister, Monica, was woken upstairs. Our house was filled with hurried footsteps and phone conversations. Excitement, fear, and confusion reigned. I stood trembling in my newly converted downstairs bedroom. Taking the stairs was out of the question so I dictated clothing requests to Monica, in a routine we’d cemented into the foundation of our relationship. After 21 years together as Monica, Kathleen, and Chronic Illness, it became her implied responsibility to get up and walk across the room to retrieve the scissors I wanted from the shelf two feet away from me. Three weeks later I headed up a different set of stairs to retrieve her shoes and wallet in an attempt to restructure our roles around my new health status.
By 8:40 we were in the car—breathless and jittery, each convinced we’d forgotten the most important item on the packing list we never finished making. The drive to Stanford was less than two hours, but it felt like traffic moved slower than ever specifically to heighten my unresolved panic. I was excited, impatient, and afraid. My heart had not stopped pounding since the phone rang. Normally my heart rate hung between 60-80 Beats Per Minute, but on July 30th it was consistently between 100-130 BPM. Once admitted, I leaned back in the bed that would transport me to the OR ten hours later, closed my eyes, breathed steadily, and relaxed. Still the screen read 122 BPM. My heart could not ignore the adrenaline pulsing through me, however much I tried to trick myself into staying calm. Somehow my birth heart knew this was our last hurrah together and was giving me every bit of strength it had left.
The level of respect I have for the organs that kept me alive for 23 years contributed to the grief I experienced in the aftermath of my surgery. Don’t get me wrong—I have railed against my tangled heart and poor excuses for lungs enough times to exhaust my most understanding confidantes. It appeared to me that the entire world had great lungs they took for granted and that it was my fate to watch them squander them, often at my expense. I noticed other students smoking more frequently on my college campus when temperatures dropped. Cold air irritated my tight airways, making it harder to breathe and often triggering asthma. I would shed hot, angry tears as I gulped frigid smoke on my way to class, huffing and puffing up the unrelenting Berkeley hills. No matter how hard I tried to find some divine purpose for my illness, it was impossible for me to reconcile the injustice. My bitterness made me feel alone among 35,000 students—and all the more bonded to my deteriorating insides.
I waited in room B201 for ten hours. More and more friends arrived throughout the day: it was a festive occasion. We played card games, listened to music, drew henna tattoos on each other, and laughed a lot. The anticipation electrified us all. Amidst all the excitement, my donor was constantly on my mind. I knew that the hours I spent waiting were some of the worst hours in the lives of my donor’s loved ones. I smiled and celebrated new hope gifted to me by a stranger whose friends and family were simultaneously learning of a loss that brought grief into their lives forever.
Every breath I take for the rest of my life is only possible because my donor and their family chose selflessness in intense suffering. Though I may never know them, we navigate the same waters. My ship has been rocked by grief more times in my 23 years than in some lifetimes. I know how a rediscovered handwriting sample can take your breath away and how a number on the calendar can spoil an entire week. I know that the pain can be just as strong five years after the initial loss. My hope is that someday I can share some fragment of the joy their gift brought me with the wave-beaten voyagers my donor left behind.
Soliciting friends to witness my advance directive, I forwarded my mom the informal list of final wishes I wrote in a bleak period in college. It includes important things like what kinds of trees to plant in my honor, instructions for how long to keep my Facebook profile active, and various demands for the party that will be thrown in lieu of a funeral. Waiting outside the doors to the OR with just my parents, I apologized for some of the more outdated references. In the two years since I started planning for end-of-life, much like my peers do their wedding days, my prized possessions have changed and friendships have evolved, along with my social media passwords. During what could have been our final moments together, my mom and I talked animatedly about where to direct donations in the event of my death. Organizing like this is one of our practiced coping mechanisms: our theory is that once we do everything that needs doing, we can return to a state of denial and escape our worries. I’m not going to pretend it’s incredibly healthy, but it works for us.
My experience in the OR was surreal: I waited hours, watching as nurses, their backs turned to me, carefully arranged metallic-sounding instruments. Behind me, my gentle anesthesiologist tended to his assigned tasks, initiating conversations from time to time. He let me choose the Pandora station: after a few seconds of intense deliberation I settled on Blind Pilot and was pleased that the only complaints coming from our small group were about his lack of a paid subscription and not my selection. The idea that this might be the last playlist I listened to added a whole new level of pressure to a decision I normally leave to more musically literate friends.
I asked for a pen and paper because drawing had lowered my heart rate while I waited upstairs. I sketched the scene before me, channeling my focus into the pen and away from the useless worries welling up around me. Seeking images of strength and wisdom, guardian angels appeared in my agnostic mind, like deceased wizards from a connection of simultaneously cast spells. My silly grin went unnoticed as I convened with my wise, witty, and spirited angels: I needed Michelle’s charming practicality, Amelia’s stubborn assuredness, and Sarah’s fiery perseverance. I could feel their presence and hear their voices. My only concern as the team started the infusion to put me to sleep was for those who waited outside the room. I knew I would have no memory of the hours that would pass slowly for my family and friends. I felt lucky to be the patient and have nothing left to do—just lie there and trust my body not to give up. My body has an impressive record of defying odds without my awareness, so I embraced unconsciousness with confidence.
If you would like to sign up to be an organ and tissue donor, pleae visit https://www.donatelife.net/
Kathleen Sheffer received a heart-lung transplant on July, 1, 2016 at age 23. She employs writing and photography to document her healing process and raise awareness. Born with Transposition of the Great Arteries and Idiopathic Pulmonary Arterial Hypertension, Kathleen is now able to channel her drive into exercising and taking anti-rejection medications on a rigorous schedule.