FIRST CALL | Nancy Lewis
“There’s a guy who makes waffles and fried chicken and he’s doing a pop-up at a local coffee shop. Wanna go there for lunch?”
“Sure,” Marco replies enthusiastically.
He’s surprised and pleased I suggested it because I never want to go out anymore. The pandemic lockdown has been lifted, but I’m still afraid, and I only leave the house for medical tests.
The coffee shop is just a kilometer away, but that’s much too far for me to walk these days. I fill a portable tank with liquid oxygen from the big reservoir in the hallway, and Marco drives us over.
He orders from the cook manning the makeshift kitchen indoors. There are well-spaced tables on the patio, so we sit and enjoy the fresh air and warm midday sun. A man walks by wearing the same jacket as me. It’s neon orange so it’s hard to miss. His fits snugly but mine hangs off me: I’ve lost weight since I bought it a few years ago.
“Nice jacket,” I call out with a smile, pointing to mine.
“Yours too,” he says with a laugh.
Our food arrives. The waffles are soft and drippy with sauce, and there’s no cutlery, so I get messy as I eat, but the food is tasty and different and I’m happy.
My phone rings. For the last eighteen months I’ve been waiting for a lung transplant, so my phone is always on. I wipe my sticky hands on the few napkins we’ve received and put the caller on speaker.
“Hello?”
“I’m calling from the transplant program.”
We look at each other, eyes wide. I mime a scream.
“Oh my god. I can’t believe this. I’ve been waiting for this call for so long.”
I answer a series of screening questions.
“Everything sounds good. We may have lungs for you. Can you come to the hospital this evening?”
“Yes,” I practically shout. I’m so excited.
“Can you be here by 8PM?”
“Of course.”
“Great. Don’t eat or drink anything between now and then. I’ll call you if anything changes.”
“Thank you so much.”
It’s unreal to finally receive this call. Sometimes I’d wondered if it was ever going to come.
I was listed for transplant in Fall 2020. During the long wait for lungs, I have a monthly videoconference with a transplant team member who checks my condition. So far, I’ve been pretty stable, but if things take a turn for the worse, they’ll put me in hospital on life support and upgrade my need to very urgent.
Before COVID, these monthly appointments would have been in person, but consultation visits are now conducted virtually. I’m glad. I dreaded going to the hospital, not knowing whether the wait would be minutes or hours, afraid to go to the toilet in case they couldn’t find me, worried my oxygen would run out before I got home.
Every month, I ask how long I can expect to wait. At first, they tell me people in my condition are listed for four to six months on average, but after that timeframe passes and the months continue to tick by, they admit it’s taking a long time for me. No one can say exactly why. After a while, there’s a niggling worry in the back of my mind that I might not actually be on the list. It’s just me being paranoid, but still…
The afternoon passes slowly, in a haze of excitement and fear. I dither around trying to figure out what to do with myself. I pack a bag to take with me, putting things in then taking them out again, not knowing what I might need.
A few hours later, another call.
“I’m sorry, but we’re not ready for you yet. You can have dinner tonight. I’ll call you as soon as I have an update.”
We’re on tenterhooks, and don’t sleep much that night.
The next morning, another call.
“You can have breakfast but don’t eat anything after 1pm and come to the hospital at 3.”
“Okay.”
Midday, I hear from her again.
“I’m really sorry about this. Have dinner tonight but don’t eat after midnight and come to the hospital at 6am. Please take a shower before you leave home.”
We arrive at the hospital as the sun rises. They give me a bed in a cramped room with several other patients, separated by curtains. Nurses check my vitals and screen me for infections. One does a blood test, filling what looks like dozens of vials with red liquid. Another wants to put a port in my vein, always difficult and painful for me. She doesn’t hit the vein and starts digging around trying to find it. She ignores my protests and keeps at it; only when I loudly yell “ouch, stop!” does she mutter “okay” and back off. A more experienced nurse takes over and thankfully hits the vein on the first try.
Marco sits with me for a few hours.
“There’s no point waiting here,” I finally tell him. “Go have something to eat and feed the cats. I’ll call you when I have an update.”
“Okay. Maybe watch a movie; it’ll distract you,” he suggests.
I try but can’t concentrate. Outwardly, I’m my usual stoic self, but inside I’m vibrating with anxiety. This wait is unbearable, and there’s no indication when it might be over.
My bed is crammed in next to the door and everyone bumps it as they go by. Stifling the urge to snap, I content myself with passive-aggressive sighs. It’s not their fault I’m on edge and the room’s too crowded.
I haven’t had anything to eat or drink in hours. Tethered to wall oxygen, I’m unable to move around. After a while I stand up and walk on the spot beside the bed, trying to burn off my nervous anxiety.
“What are you doing?” asks a nurse in surprise.
“Trying to get some exercise.”
She shrugs, as if to say whatever.
Nurses periodically check my vitals and take more blood samples. This seems weird to me: could things change that quickly? But I let them do what they want to do.
A doctor gets me to sign consent forms for the surgery. Another brings a paper stating they don’t know the donor’s medical history; I sign to acknowledge this is a potential risk. It sounds scary but I’m not about to turn down a transplant now; who knows when, or even if, I’ll get another chance? The first doctor visits me again and verbally confirms that I will get a double lung transplant, then initials my upper chest on both sides so there are no mistakes in the operating room.
All this time I remain in my street clothes, which leads me to believe nothing is going to happen anytime soon. Bored and exasperated, I pester the nurses and doctors for an update every chance I get, but they can’t disclose anything specific due to privacy laws. I knew that, but still, I feel compelled to ask.
Here is what I do know: someone, somewhere, is on life support, and transplant teams have been contacted. The potential donor is matched with possible recipients based on blood type and antibodies; size of the organ is also considered for the heart and lungs. I’ve been called in because I’m a good match, and there is no one on life support who also matches. If there were, they would likely get the organs, not me. I need to be here, ready for surgery, because organs must be transplanted quickly once available.
Marco returns late afternoon, looking as exhausted as I feel. By now I’m thoroughly fed up with lying here in limbo, hungry, thirsty, bored and irritable. Finally, around 6pm, a sign of progress. The nurse gives me a pack of antibiotic cloths and tells me to wipe myself down thoroughly and change into a gown. The evaporating antibiotic makes me cold, and I crawl under the covers, shivering. I wait some more.
At 8pm a doctor comes.
“I’m sorry, but surgery is cancelled. You can go home now.”
I don’t even bother to ask why. I know they can’t give me any details.
Of course, it’s hugely disappointing not to get new lungs, but the transplant team must have good reasons for deciding this surgery should not go forward. I trust them to know these lungs were not right for me.
It’s also an enormous relief to know definitively that I won’t get surgery today. The waiting and uncertainty have been torture. It’s been fourteen hours since my admission to hospital, twenty since I’ve had any sustenance, and all I want is to eat and drink and get out of here. A nurse brings juice and yogurt, all she can find in their fridge, and I wolf it down greedily. She removes the port from my arm as I dress.
I need oxygen to get home. They’ve put my tank in a storeroom and the liquid inside has evaporated. It takes them a while to figure out how to refill it, but finally we’re ready to leave.
Back home, we dig out a frozen pizza and have a late dinner, before heading to bed for much-needed sleep. It’s been a long, exhausting and frustrating day.
At least my paranoid doubts about whether I’m actually listed can be put to rest. I’m optimistic another call will come soon, and the right lungs – my lungs – will be found.
I return to what has become my regular life, waiting and hoping. It takes several days to wash the doctor's initials off my chest.
Nancy Lewis, who recently published a personal essay in Trash Panda Literary, has co-authored eleven health-focused academic articles. She earned a PhD in anthropology, worked in equity-based health policy and travelled extensively, living six years in Asia. She was diagnosed with several chronic progressive diseases in 2007 and learned to find joy and contentment in spite of deteriorating health. She received a life-transforming double lung transplant in 2022. Now reveling in her second chance at life, Lewis pursues her passions: writing, cooking (and eating) and photography. She lives in Toronto with her husband and two cats.