I lift my left arm to check the time on my watch. It is 4:56am. Jimmy is curled up on my back under the covers, keeping me warm. The temperature has dropped again but it is hardly noticeable with this tiny bony furnace in the bed. I stretch to grab my phone from the nightstand, unplug it, and set it on the side of the bed just slightly tucked under my pillow. I push the button on my trilogy machine to stop the air from pushing into my lungs and pull off the mask. My mouth is so dry it hurts. I take apart the mask and reconnect the oxygen tube to my cannula extender, pop it in my nose, and bleary eyed reach for my water bottle, knocking over my glasses in the process. I take a sip of fresh cool water and swish it around in an attempt to wet this mouth desert I’ve woken up to. I set the water bottle back onto the night stand and grab my phone. I am awake and tired at the same time and just honestly not ready to get out of bed yet. I open up the book I have been reading in the Libby app, The Post Mistress by Meg Waite Clayton, and slowly start to wake up through the characters talking about how they are going to get Luki back to Villa Air-Bel from occupied France. Less than 20 minutes go by and my watch alarm buzzes. It is time. I have given myself two hours to get up, wake up, get ready, and settle my anxiety before having to leave the house for my six week transplant check-in. This morning, bright and early, we are kicking it off with all the pulmonary function tests: three individual breathing tests into a machine that calculates my lung volume, gas exchange, and more metrics that I just don’t know – all that need repeated three times and then the dreaded six minute walk. Six minutes does not sound like a long time but honestly even those who do not have compromised lungs say they hate it. I’m not alone! Then after I wrap up these tests, I plan on stopping by pulmonary rehab to fill out the end of the session paperwork, before heading back downstairs in Martha Morehouse to give them all my blood. 

I run through the Martha Morehouse plan while still in bed petting Jimmy. He is sound asleep. I slowly lift the covers, scoot out of bed, and throw my shirt on for the day to walk to the bathroom. I am still tired and yawning as I grab my toothbrush and toothpaste and tackle the destruction from my erosive oral lichen planus drying out throughout the night due to my trilogy machine. I swish various mouthwashes, wash my face, and tip toe into the kitchen to make a latte and quick bite. Half of my morning medication requires food, the other half requires an empty stomach. I carry my drinks and breakfast into my office, cozy up on the coach in my white fluffy blanket, check the time (just around 6am now) and dive into my morning pages (three pages written each morning following the Artist’s Way’s protocol in unblocking creativity). After, I open The Road Trip by Beth O’Leary – light hearted – and pick up where I left off last night. I get through a few pages then start to feel my anxiety rise. I always get nervous before my tests. I pause. Close my eyes. And start to count my breaths. When this doesn’t work, I get up and walk to the bathroom to grab my clonazepam. It should kick in within an hour which is around the time I need to make sure I’m all packed and ready to go. I return to the office and bend back open the book and continue to read about Addie and Dylan’s relationship. The clock blinks over to 7:30am. I need to get my shoes on and put my belongings in my tote – everything is on the dining room table ready to go, just not yet bagged up. Before putting in my oxygen tank I prepped the night before, I turn the main opener to verify this new tank is full and it is only half full. Sam hops to and replaces the half full tank with another fresh one and we confirm it is good to go. Out the door and in the car we’re on our way to Martha Morehouse. 

Sam pulls into the curve in front of the smaller building of the Martha Morehouse complex. He tells me I am going to do great. I am a bit shaky in my response as my anxiety fights through my voice. I say I love you and heave myself out of the car. I pause. Gather myself and head in, slowly, to the doors. This time I have my new loop earplugs in to lessen the overall noise in the hospital. I am pleasantly surprised at how calm they make me feel. It also helps that the hospital is relatively quiet at this hour. I am immediately taken to registration. Have to have minimal conversation with the admin representative and head on over and up to the pulmonary diagnostics labs on the second floor. As luck would have it I have the elevator to myself. Last time I was here, I had to pause between registration on the first floor and the elevators to the second floor. This time, I am smooth sailing. I get out of the elevator and walk toward the familiar corner of the second floor where pulmonary diagnostics is. A new respiratory therapist, Ella, takes my stickers and I sit. She also brings out one of their own oxygen tanks so I can preserve my own – such a kind gesture and as small as it may seem, it really makes me feel special. The pulmonary team at Ohio State has been nothing but kind, understanding, and sympathetic. 

Ella and I walk through the diagnostics doors to the end of the hall and enter the room. The familiar see-through egg shape contraption is there with the breathing device attached. Today we’re doing the usual three tests that usually leave me winded and dizzy. The tests combined form a picture of how my lungs are functioning from how much air I can expel, take in, etc. It is fascinating and all of this applies to my Lung Allocation Score (LAS) which factors into my overall score for the waitlist. But first, the all important Arterial Blood Gas (ABG) which measures the amounts of arterial gasses like oxygen and carbon monoxide. I am familiar with this, but each time it still hurts. The technician sticks in a needle and roots around to find an artery. First try is on my wrist. She dug in and snaked around but couldn’t hit my artery. Next, she went for my inner elbow which luckily on nearly the first poke she hit it and the pain subsided. 

Ella is calm, collected, and funny. It always makes such a difference working with a respiratory therapist who is so nice and understanding. We head out of the room to walk to the hallway for the dreaded six minute walk. Sure, six minutes doesn’t sound that long but walk that in a loop – no, thank you. Even Ella mentioned she doesn’t like it. And, one of my transplant friends told me that post-transplant and recovery she still doesn’t like it! Factor in shortness of breath and feeling like you can’t breathe, again, no thank you. I sit in the chair next to the heart monitor, blood pressure machine, and oxygen saturation device that gets strapped to my forehead. I regain my breath after the walk over to the hallway and we are good to go. Ella is kind enough to navigate the oxygen tank for me during the walk. Nikki, another respiratory therapist, gives us a countdown and on one I raise my fist in the air and charge forward toward the neon orange cone at the other end of the hall. We round the corner together and at a fairly decent pace make it back to the starting cone. Nikki reads out we are a minute down! Then Ella says the pulse ox isn’t reading right anymore. Nikki runs to grab the alternate that fits on my finger. I’ve dropped to 85% on 2L/min of supplemental oxygen. I keep walking, focusing on my pursed lip breathing and pace. Ella bumps me up to 4L/min but I am still hovering around 85%. Nikki says to go ahead and bump it up to 6L/min and we’re back in the 90s. I continue to trudge along. My chest is burning but overall I am feeling pretty damn good about my progress. I have one minute to go. I quicken the pace a bit and end steps away from the beginning cone. I find my way back to the chair to regain my breath. She calculates the distance and I did 992 feet, 415 feet more than last time. For reference, the average healthy human six minute walk range is 1312 – 2296 feet. I feel good. I feel really good about my number. It is clear to me that as difficult as it is to exercise with so much shortness of breath, I am getting stronger. 

We walk back through the gray carpeted and walled hallway to the pulmonary diagnostics facility and back to the tiny room. I unhook from the borrowed oxygen tank and re-hook to my portable tank in my tote. I slip on my jack, stuff my beanie into my tote, and say by and thanks to Ella. I head over to pulmonary rehabilitation. I finished my eight week session (from home) and need to complete some forms in person to wrap everything up. I see Whitney and Morgan who have been so kind and instrumental through all of this. We chat about how long I have been waiting and they both tell me to keep exercising and stay optimistic. I leave through the glass door and sit in the lobby before making my way to the labs for the final stop in Martha Morehouse. I am short of breath but energized after my increased footage in the six minute walk. I push myself off the seat in the empty lobby of pulmonary rehabilitation and make my way to the elevators. Downstairs I slowly walk to the labs, hand the technician my stickers, receive a round light-up buzzer in return and go find a seat in the downstairs lobby. It is loud and crowded. I dig into my coat pockets to find my loop earbuds and pop them in. Silent relief. I stare at my hands curled around the buzzer and the list of different blood work I need today from each doctor. I want to go home. 

The buzzer wakes me from my trance in the waiting room. I grab my tote, set my oxygen tank to a continuous flow, and head to the labs. I’m escorted back to a chair, gray of course, and request we use my left arm as my right arm was already beaten up by the ABG blood work earlier that morning. She pops in the needle and quickly draws four vials and I’m free. I text Sam and head out the door to sit alone on the bench outside. It is cold, but I am over being around people and inside the hospital. The fresh air weaves through my clothes and brushes against my cheeks. It is a welcomed feeling after being cooped up in windowless rooms for hours. I am drained from the day but feeling optimistic about my PFTs and six minute walk. And, I got through today. This was the first time I had entered another building in 42 days. 

Sam drops me off at the house and then runs over to the independent shipping station at Kingsdale. One of the vials required is always a 50-50 gamble on whether the lab will send it to Doan Hall on OSU campus or if we have to ship it. It is weird. I go to OSU for my lab work but every 4-6 weeks a random PRA kit will show up at our house with a vial and FedEx return label. And today, we had to ship it. 

I enter the house and pet both pups. Jimmy is racing back and forth doing his usual loops with his giant stuffed floofy bone and George is leaning at a 45 degree angle against my legs so much so that I need to lean against the kitchen counter. I smile a tired smile. Before our virtual appointment with Dr. Kirkby and the transplant team, I grind some espresso beans to make a quick mocha latte with the Ghirardelli chocolate sauce Sam bought me for Christmas. A little cup of happiness to pick me up after a long day. 

I also make a smoothie to try and keep up with my attempt to get more fruits and veggies in my diet. Armed with both beverages I walk to my office. Midway there my oxygen cord gets stuck behind the compressor and causes me to pause as the cannula is ripping back my face. I walk a step backwards and place both beverages down, mutter some power words, and untangle my oxygen cord from behind the compressor. I return to my beverages and swoop them up into the office. I sit in the office chair, turn on my space heater, and login to MyChart to review my lab work and PFT results from earlier in the day. Only a few labs are posted. I write down more questions in my shared notes with Sam. I review our already written down questions: where am I on the list? And, how do I stay encouraged? I have been feeling so defeated lately. I am so short of breath but am trying so hard. Morgan from pulmonary rehab told me that this is ok and normal. My lung disease isn’t reversible. The exercise right now is going to help me maintain this level of shortness of breath and hopefully help it not get any worse. The statement is encouraging and at the same time makes me sad. 

Sam joins me and we call in to chat with Dr. Kirkby. My MacBook Air is on its last leg and it is difficult to hear him. He asks how my mouth is doing and I inform him I’m doing a prednisone taper because of how bad it is now, but there isn’t much else I can do until post-op. He informs us I’m still at number two for my blood type but there are so many other factors that come into play when evaluating lungs. There really isn’t any way to tell when the pair for me will come in. Which we know, but every time I hear it my heart drops. And as for encouragement he echoed Morgan’s statement. 

After hanging up with Dr. Kirkby I felt the least optimistic that I have felt leaving any of our other appointments with the team. I am trying so hard and I know this is out of everyone’s hands, but it is so difficult. I feel worn out. I am tired from the day. It is overwhelming each time. Each transplant check in appointment reminds me that I am still waiting. 

I call my mom to let her know the news about the six minute walk and that there still really is no more definitive timeline or even a guess at this point of when I will likely get the call. She’s working on a new painting in the style of Marcel Mouly which is very different from her usual medium which will be really neat to see when she’s done.

Our call wraps up. We hang up. I put my phone down and cry.