It doesn’t get easier. I have been listed for a lung transplant for ten months. Within those ten months, I have completed six pulmonary function tests. Prior to being listed, I completed at least the same amount if not more. The type of test and the chronology in which the tests are administered are relatively standard regardless of facility or technician administering the tests. Not only are the testing protocols the same across different hospitals and facilities, but for the most part my results have remained stable. Clearly the results are not what one would consider good given I have a severe lung disease, but there has only been minor regression over the past few years. 

Even though I know what to expect from the tests and know the results will show that I have not significantly regressed, I cannot shake the associated anxiety of an upcoming transplant checkin appointment. I know it will take all day. I know that I will be tired. I even know the course of every single step I will take to get from the car through registration to the tests then back to the car over to get my lab work and chest x-rays done back to the car and over to the hospital building in which I will wrap up the day meeting with my main transplant surgeon. I could draw the map of my pulmonary check in days including frivolous details such as where each plant container is located and what type of plant is in there. I could outline the location of the elevators, the benches along the way, and where to find a wheelchair and available patient support person to wheel you through registration. Then carry this over to registration and where in registration I prefer to sit and also in the various waiting areas where the best seats are for the tests, labs, and final appointment. Yet, with this extensive and useless knowledge of the layout, knowing the details of the tests and what to expect in the results, and understanding what those results mean, I am nervous and anxious about the upcoming appointment for days prior. 

I am living in a limbo state with my health where I am lucky that I am not bedridden, but I also struggle with shortness of breath walking from the kitchen to the office which is roughly 20 feet. When I go to grab my lunch, I pause in the kitchen and rest on the edge of the counter before I open the refrigerator to grab my various options. After grabbing my lunch items, I rest, again, against the counter before I walk back to my office. Upon returning to the office, I plop into my office chair, topple my lunch items onto my desk, and rest my elbows on my desk propping my forehead against the palms of my hands to catch my breathe, again. And this is just to get lunch. I manage through the day saving my spoons where I can before crumbling into bed at night exhausted and short of breath. But, I remind myself that I am lucky to be home and in a position where I can still do a good amount of daily life activities on my own. I do not have full autonomy, but in comparison, I am doing okay. 

Still. This is hard. Even with exercising and trying to push myself, I am treading water. Thirty minutes on the treadmill at a slow pace exhausts me. And no matter how much or how hard I push myself, I will continue to be short of breath until I am exercising post op. All my efforts today are for the future, post transplant; post transplant, the carrot that has been dangling in front of me since we were told transplant was the next best treatment plan for quality of life when I almost died in 2021 and became dependent on supplemental oxygen 24/7. 

I know why I am anxious. I know where those nerves are stemming from. But it doesn’t make this any easier. It isn’t about making it through the tests. It isn’t about how exhausted I will be going to various locations in one day porting multiple cans of oxygen feeling like I’m breathing through a bent cocktail straw. It is knowing regardless of tests, exercising, being vigilant about medications, tracking my life, and being mindful, I cannot change my current state and cannot influence when I will receive the call that will start my journey toward being able to walk more than 20 feet without getting short of breath.