The other day, I had a follow-up clinic visit for cystic fibrosis (CF). In my lifetime, I have been hospitalized over 70 times due to pancreatic insufficiency, infections in my lungs, and general malaise. However, since being a candidate for a new drug that came to market a few years ago, I’ve had a rather miraculous recovery.
Sitting in the waiting room for my pulmonary function tests, I noticed how aggravated I was. I’ve never felt anger before in having my lungs checked. I used to be grateful for the update to see how they were doing and would track my estimate for how much of my life I have left to live. However, I hadn’t felt any symptoms of sickness. I was finally happy with where my future was headed and I was frustrated it was taking so long to breathe into the device I had trusted hundreds of times in my life.
After the 10-minute long lung test, I had to trek across the hospital campus to where my doctors were. The same people who have treated me when I was end-stage, cared for me as an inpatient, and I now found myself snapping at them. They asked basic questions about diet, lifestyle, and how I was holding up. I didn’t want to answer. I was annoyed that the system somehow felt like pulling me back into what it meant to be a full-time patient.
“I don’t have time for these questions,” I thought to myself. “I’m fine,” I muttered. I knew my attitude was off when I looked over the shoulder of a medical assistant who has treated me for years, as she typed “Patients energy seems off.” into MyChart. My energy wasn’t off, I just didn’t want to be reminded of the 12 years of my life I spent inside those walls now that I am on the road, doing what I am meant to be doing with my life.
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After 2 hours of doctors making the rounds they did for years with me, I was exhausted trying to convince them I was fine. Then, I got to run back across the campus to where the infusion clinic was. The needle goes in, they draw back 11 tubes of blood, and tell me results will be posted online in my chart. I was free to leave for the day.
Relieved I could get back to my life, after a 5-hour checkup day, I couldn’t help but notice how much different this clinic visit was. I am not the sick girl they were used to seeing. These same people that I cried with, I now wanted to run from. I was agitated with them, frustrated by their probing, and angry they took so long because, on the outside, I am finally living my life and didn’t want to be held back by the system of check-ins and tests, and outpatient services.
The next morning, I fired up my laptop for a day of meetings and was notified of a chart update. “Klyn, we regret to inform you that your blood tests came back a bit off. The RN also forgot to draw a key lab that helps us determine if your current results are more serious than we initially thought. We want you to repeat the blood draw as soon as possible.” Furious, I decided to go for a walk rather than call and scream at the messenger.
Walking around my neighborhood, it hit me. These people still care. They joined one of the toughest careers to help others, and the least we can do is help others help us. I recognize that my thinking, now that I am on the outside of the system, needs to adapt. Balancing health for the first time in my life is a byproduct of how I balanced sickness.
I called back, from a sense of gratitude, and rescheduled my tests. If my healthcare journey has taught me anything, it’s that in times of sickness and in times of health, having a team who cares more about your inner well-being than even you do, can be the make or break between living and thriving, or just merely existing. I don’t know what the tests will reveal, but my stubbornness to go through the process is hurting me more than helping me. Perhaps the beauty of progressive health issues is that it teaches us even in the good times to hold up a mirror to ourselves, analyze how we show up in this world, and continue on our journey.