Listed.

We sit on the couch watching rerun episodes of Bob’s Burgers and recap our day at work. We both work remotely but still the weekends hit the same. It is Friday. Between work and the gauntlet of wrapping up various doctors appointments there is a palpable tension in the room. We are both waiting for my phone to ring. We anticipated it coming through all day: the call from Tonya, my pre-transplant coordinator. She is set to meet with the board today to determine whether I can be actively listed on the waitlist for a double lung transplant.

As we sit, the phone lights up and rings. My heart drops into my stomach and my hands shake so much it takes me two times to successfully swipe open my phone and multiple jabs at the speaker button before I shout out “Hi Tonya” spooking myself at how loud I am. Tonya says hello. Pauses. My eyes dart from Sam to the phone back to Sam then to the phone. “You’re listed.” I scream again, cover my mouth and ask her to repeat what she said. “You’re listed.” I can hear her smile when she says it. “What does this mean? What do we do now?” my brain is spinning as my anxiety spikes. “Get your bags packed and keep your phones on you at all times. If you do anything two hours outside of Columbus, you call me before and let me know. If you get a cold, sick, any change – you call me.”

I am listed. Average wait time, one month. My emotions ebb and flow rapidly. I want to cry. I am so happy and I am so scared. We share the good news with our family. I put a list together of what I want to put in my bag. Iterations and iterations later, I start packing. We could get the call any day now. Any day, any time. I am listed. I am listed for a double lung transplant. I am going to be able to breathe again. I don’t remember what it is like to breathe. As I gather extra face wash, hair ties, and such from the bathroom, I look in the bathroom mirror and take out the cannula. I smile at my reflection. I still don’t look like I used to. I have been through a lot. But soon, I won’t be tied to oxygen. Soon, I will walk through the house without pausing to catch my breath. Without pausing to sit through the anxiety that swells when I cannot breathe. Average wait time is one month. 30 days. New lungs, a new chance, a new chapter in my life.

One month later.

It has been a month since I was listed. Sam helps switch out my oxygen tank to a fresh one and puts it back in the backpack. I nervously go pee for the 20th time. I return to the dining room where my oxygen tank is and swap out my home oxygen tube that is connected to a compressor to the tubing attached to the portable oxygen tank. There are two oxygen tanks in my bag: one hooked up, one for backup. I yank the bag onto my shoulder, brace myself on the dining room table to catch my breath and wheeze out “ok. ok let’s go.”

I stare down at my feet as we walk to the car. Leaving the house gives me anxiety and causes panic attacks. I make it to the car and slide myself in. I press my eyes shut, stabilize myself in the passenger seat, and focus on my breath: in for three, out for six. I finally get back to a normal breathing pace and open my eyes to watch us pull out of the driveway and head off toward the Ohio State University campus.

We valet the car and walk in through the sliding glass doors toward registration. The walk from the parking garage to the Ross Heart Hospital (where the Ohio State University transplant team is located) is too far for me to successfully manage.

Today we are here for a spirometry test, lab work, and an appointment with the transplant team. We are instructed by the first desk check-in team to go over to the registration desk. I nod and smile and turn to slowly walk toward the circular registration desk going over in my head “Hi I’m Sarah I have a spirometry test, lab work, and an appointment.”

Two months later. 

We arrive at the Ohio State University hospital and I pull myself out of the car. Sam goes to go park it in the garage. I wait on the metal bench outside the sliding glass doors and brace my elbows against my thighs staring down at the sidewalk catching my breath while I wait. Sam turns the corner and I stand. Hands at my waist, breathing in and out. We stop at the first desk let the attendant know that we are here for pulmonary function testing, lab work, and then wrapping everything up with my appointment with my transplant doctors. She looks at me and asks if I know how to get to the pulmonary function testing building. I glance at Sam and back at the woman behind the desk and point to the transplant door with a slight tilt of my head because honestly, I don’t know. I tell her that last time everything took place here. She smiles and says that pulmonary function testing today is actually happening on the 8th floor of Doan Hall and registration is on the 2nd floor. My eyes grow wide looking down the expansive hallway. I steal another glance at Sam, my heart is pounding and I can feel my anxiety brimming. I can’t walk that far. She picks up on my body language and offers to grab us a wheelchair. I start shaking. I didn’t plan for this. I slowly sit myself into the blue wheelchair and Sam starts pushing me toward Doan Hall. I shakily say thank you to him. I am embarrassed. I feel weak. We get through registration and Sam wheels me to the elevators. I don’t make eye contact with anyone. We get to the pulmonary testing floor. It looks like we stepped back in time. The beige walls are faded. The chairs in the waiting area are busted and look like they haven’t moved since the 90s. The respiratory therapist comes out to get me. I am still shaking. I slowly follow her down the hall and sit to catch my breath. I am allowed to take off my mask – the room is ventilated to pull any potential airborne viruses out. It is odd. The room has the usual machine in it for pulmonary function testing but is also overcrowded with random old desks and chairs. I feel faint. Dizzy with anxiety. I finally catch my breath and we proceed with the testing. This is then followed up with a six minute walk that I completely bomb. Hopefully it will at least improve my lung allocation score so I can get bumped up the list for transplant. 

After the walk is over, I meet Sam in the waiting area and plop back into the wheelchair. We head back over to Doan Hall for the final appointment with the transplant team. We sit for 45 minutes in Doan Hall’s waiting are and are then finally taken back to a small room for our appointment. Another three-quarters of an hour passes in the small room and we meet with the team. We go through the usual round of questions, then we ask about the wait time. Our main doctor tells us that it could be any day now and on average they are seeing more of a two to three month wait period. 

We leave feeling a bit better. We just hit two months. We get home and are exhausted but still running off of “it could be any day now.” We just have to be patient. 

Nearly six months later.

175 days since I was actively listed for a double lung transplant. We will hit six months next week and meet with the team for our four to six week regular check-in the week following. I am tired. We are tired. Each time the phone rings, we still jump only to hear the automated voice of a spam caller asking if we’ve considered selling our house. It is exhausting.

After dinner I walk into the bathroom to brush my teeth and wash my face. I rarely wear make-up but this morning I felt like taking the extra time to throw a bit of eyeliner on and mascara followed by my new red petal bouche by Violette_FR. I have had a shit week. Really a shit few months and thought a bit of makeup might change my mood. After rubbing the mascara, eyeliner, and lipstick off my face, I splash water to remove my face wash and dry off my face on the gray towel hanging on the rack to the right of the sink. The rack leans against the wall and softly knocks back and forth as I dry off my face and smear off the eyeliner that stains my cheeks. I rearrange the towel, put the cannula back in my nose and lean my elbows against the marble countertop while I catch my breath. I tilt my head up and see my face in the mirror. Eyes slightly red from rubbing the makeup off from the day, cannula in its usual spot, my neck and shoulders tensing and relaxing with each strained breath. My eyes brim a bit with tears as I stare back at myself. How is it that I am waiting for a lung transplant? How did this happen? There were no signs. Nothing that led up to this. No serious illness, no ER trips until January of 2019 and even then it was unclear what was happening. No one knows why I have bronchiolitis obliterans. We only know that this lung disease can kill me and the next best treatment plan is transplant. I tell myself it is ok and tilt my head back so the tears recede instead of spilling down my cheeks.

Time passes slowly. We don’t always know what day it is. We are isolated in our wait for the call. We haven’t hugged our family in over a year. Now with omicron and the cold weather, we haven’t seen our family for a quick porch hello since before Christmas. I haven’t left the house in almost a month and Sam has only left to go to Walgreens to pick up my medication. We’re fine and we’re not fine. We’re lucky to have each other. Because even when the mental and physical toll of waiting for this life changing surgery is too much and we’re exhausted and out of spoons, we find something to laugh about or at least find solace that we are here for each other regardless of how weird and just unreal this situation is.