I didn’t stress about packing absolutely everything I needed because I believed it would be a dry run. These are never actually rehearsals, but they’re referred to as dry runs after it’s determined that the potential match is not a good one. Almost every transplant patient I knew had had at least one—one friend even entered the Operating Room before they 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! 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 for 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 in my newly converted downstairs bedroom—taking the stairs was out of the question this morning 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 had become 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.
I had imagined this phone call several times a day for the last month. After one too many heart-stopping calls from numbers with the 650 area code (“Ok, Melissa, you’re calling from the Stanford Chest Clinic, but do you have a donor for me? Speak faster so I can breathe again!”), I called my nurse coordinator to ask what sort of an introduction I could expect. She said they would make it clear immediately that this was not your standard appointment-scheduling phone call that I seemed to be getting so many of and patiently talked me through the questions they would ask me. 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 told me they would have a bed ready for me at 10am. It went exactly the way my nurse coordinator had described it.
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 it knew this was our last hurrah together and my heart was giving me every last bit of strength it had left.
I have an insane level of respect for the organs that kept me alive for 23 years, which is part of why this experience has been wrought with grief. 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 cigarette smoke more frequently 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 on a campus of 35,000—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 will bring grief into their lives forever. I am intent on making use of that generous stranger’s most vital organs. I may never get to know who my donor was. Even if I never meet their family, I know 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. I will be forever indebted to my donor and their family for choosing to be selfless in a moment of intense suffering. Every breath I take for the rest of my life is only possible because of their gift. My hope is that someday I can share some fragment of the joy that gift has brought me with the wave-beaten voyagers my donor left behind.
I solicited my friends to witness the advance directive I filled out as I waited, and forwarded my mom the informal list of final wishes I had written as a junior 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 Operating Room with just my parents, I apologized for some of the more outdated references. In the two years since I started planning this, 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.
The whole experience of being in the operating room 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, starting up conversations with me 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 left up 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. I sought images of strength and wisdom, and 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. 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 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. My body has an impressive record of defying odds without my awareness so I embraced unconsciousness with confidence. At that point I had no idea the extent to which my body was working to keep me alive, but two weeks later I would see just how far my organs had been pushed.
A note to my beloved readers: Thank you for following along, sharing my posts and sending encouragement my way. Stay tuned if you are curious about the state of my original heart and lungs when they were studied in Stanford’s Pathology lab. I am still piecing together the full experience of receiving “The Call” and would love to hear stories from your perspectives, if you are inclined to share them.
View from the car
Approaching the exit
Checking in to Admitting
Waiting in Admitting
Visiting with PH specialist, turned friend (we’re Facebook Official), Dr. Zamanian
Observing as Max puts everyone on edge with his music selection
Last IV Remodulin pump change
Last IV Remodulin pump change
Leaving Unit B2
Our parade from B2 to the OR
Photos by Monica and Kathleen Sheffer