Art and Text: Carlos Armstrong
Warning: this post includes photographs of surgical incisions some people may find upsetting.
To me, chronic pain is more than just a subject to research. It is something constantly present in my own life.
On the lower end of my pain scale, I have been living with debilitating chronic migraines since I was about 14 years old (9 years as of writing this). Because my dad has epilepsy, I am very photosensitive, requiring subdued colors and screen brightness or else I will get a migraine. Being originally from Houston- a city below sea level- any changes in the barometric pressure also trigger migraines.
On the higher end of my pain experience, in the summer of 2017 I began to experience chronic respiratory issues that left me out of breath embarrassingly fast after any physical activity. I had been relatively healthy my entire life, not really able to run more than a block. But who really can do that? At the time, I had been working a hotel service-like job for Oberlin College, which was an extremely physically draining job for even my athlete coworkers.
I always felt very anxious about working the job, as the long hours of heavy physical work made everyone working dread the upcoming shift. I started getting sick during my shifts, where out of the blue I would have to rush to a bathroom to vomit. By the second month of the job, I was throwing up five times a shift on a good day. Thinking it was just anxiety, I did not seek medical attention as to not put a greater strain on my coworker’s already arduous workload.
Once the school year (my senior year) started, I could still only stomach gummy bears and ginger ale. It took me half an hour to walk to classes just down the street from where I was living at the time because I was so out of breath. I finally realized something was wrong and went to the emergency room, where they first diagnosed me with severe hypoxia.
Since my blood-oxygen level was at an abysmal 75%, I was sent to Mercy Hospital in Lorain, OH. There they allegedly performed a bronchoscopy (I still have the incision scar: bronchs are not a cut-you-open surgery!), and ended up diagnosing me with an extremely rare strain of pneumonia before discharging me after a week on 5L of oxygen. I was back in the hospital not even a week after.
After spending another week at Mercy, I was finally transferred to the Cleveland Clinic, where I lived for a month. After much testing and a weekend in the ICU, I was diagnosed with pulmonary venu-occlusive disease (PVOD), a 1-in-10,000,000 diagnosis that had developed throughout my life. In PVOD, the arteries and veins of the lungs slowly constrict and scar up, making the right heart pump harder than it needs to. This causes the right heart over-take space in the left, decreasing circulation in the body while essentially causing the heart to beat itself apart. There currently is no cure for it, so I immediately began the process of getting on the list for a double lung transplant at the end of October 2017.
I spent my winter break of that year spending roughly 12 hours a day undergoing every possible test to see my viability as a recipient. Some tests were invasive, some not, all exhausting and anxiety provoking, and all depressing. Every appointment felt violating to my body and constantly reminded me about how limited time could be. I returned to classes after the break, balancing academics, appointments, and social life with the help of my mother and professors. Every interaction had a timer on it between painful heart medications, oxygen tank capacities, and an impending sense doom that my situation had brought.
April of 2018 kicked off with my placement high on the transplant list! Constant dread was replaced with constant anxiety as I slept every night with my phone on the highest volume. My family, friends, and professors waited with baited breath for me to announce I had been called in, which only took 11 days after my placement. The surgery was scheduled for 5am on April 28th. My family and partner supportively held my hand in the ICU that night before I was brought into the operating room.
My recovery was pretty quick compared to most lung transplant recipients, but was still painful to this day. Any movement hurt, the incision point hurt, coughing was excruciating, and large cumbersome drainage tubes made just breathing with the new lungs hurt. However, with the help of my loved ones and the transplant team I was able to push myself through the recovery process.
Because of my experience, I want to dedicate my new life to learning more on how to help others in pain, especially kids and teens who may not understand how to cope with their situations. This Fall (2019), I will start my Master of Social Work program at Adelphi University. Until then, I will continue my good health while doing more research on what more we can do to help adolescents in chronic pain.
Carlos has worked on the 1step2life project since January 2019, compiling a massive database on scientific research on adolescents with chronic pain and pain rehabilitation. This summer he has been helping to build our Knowledge Base and is preparing for a clinical trial of our app.