On March 6, 2020, I made the decision to go to Brooklyn for a festival. There were 245 confirmed cases of Covid-19 in the US. The chances of me meeting one of them was more than one in a million.
I ended up with Covid. I was ventilated, placed on ECMO (extracorporeal membrane oxygenation,) needed dialysis and a medically induced coma. I spent weeks in the coma, had some bizarre delirium and eventually woke up in a different hospital, which was more than an hour away from where I went in.
There are plenty of accounts available online to explore what the ICU experience was like. Allow me to summarize them briefly. It’s horrible. I, however, would like to take a little time to talk about what it meant to be the first.
There is no honor in being the first Covid patient. There was no guidance at the time. Any provider that I encountered had to draw upon their experiences and make educated choices on treatment, and they were admittedly scared. My critical care pulmonologist advocated for ECMO for me despite there not being a lot of success with it worldwide. In fact, at the time,
I was only one of 50 Covid patients in the world to have survived after ECMO. I got lucky. The providers had to contact other countries to discover treatment modalities. My treatment was similar to a patient in France.
That patient received the medication. I was scheduled to receive the same one, but my blood pressure was too high, so it got delayed. In the meantime, that patient in France ended up passing away from the medicine. I didn’t get it. I got lucky, a lot.
When I was in a coma, it seems that everything in the world changed. I awoke to a whole new set of norms. The words, “14 days to flatten the curve” have no meaning to me. I “slept” through them. When I was in the ICU and awake, I spent a lot of time trying to figure out what was going on. I spent a lot of time alone.
It seemed to me that I rarely got the door to my room opened. Visitors were not allowed back then. When I was coherent, I once saw the nurse, who had just performed nursing duties on me, clean the floor. The nurse mopped the floor to conserve PPE. It was a whole new world.
Nurses would have conversations with each other as they took care of me. Their words with each other were my glimpse into the outside world. I overheard what was going on. Doctors were making masks. Clothing was left at the door when they got home. Expiration dates no longer existed on medical supplies. Ventilators were being made by a car manufacturer. Portable morgues were established. Ships were being brought in as hospitals. Hospitals were being built.
After time in the ICU and a stepdown unit, I eventually made my way to a rehab hospital. Being patient zero there as well, I was exiled to my own room. They would open the door three times a day. In the morning, in came a nurse, a doctor, occupational therapist, physical therapist and breakfast all at once. I lost 60 pounds in the coma. All I wanted was breakfast. I felt like all everybody else wanted to do was to get out of my room. No one had great guidance but were doing what they needed to do for the safety of their assigned patients.
Upon being sent home, there were no facilities to go to for physical therapy. Everything was still shut down. I was fortunate to get a visiting nurse and a visiting physical therapist, which had to suffice until facilities reopened. I am eternally grateful to my providers for giving me more days of life, but I didn’t escape unscathed. Today, I still suffer from a paralyzed diaphragm, neuropathy, PTSD and mitochondrial hijacking that suppresses immunity.
Being the first brings with it some collateral damage. Unfortunately, I gave the virus to at least ten people firsthand including my wife, father and mother. One of them died, my dad. I deal with that thought daily.
Overall, being Patient Zero has been largely disadvantageous. I was, however, first in line to secure a compatible psychologist. Apparently, there are incredibly long patient waiting lists for this service. I was prioritized on the list for vaccines. Another such “perk” is that you are often first in line for services.
Hopefully, I will be amongst the first if they discover a cure for mitochondrial hijacking. I was in the first class for pulmonary rehab, first in post-ICU clinic and first in post-Covid clinic. Unfortunately, that usually came with an all too familiar quote, “We’re learning from you.”
Dan Bisset is a University of Pittsburgh graduate, husband, and early pandemic COVID-19 survivor who wants to share his experiences to help raise awareness about the importance of COVID mitigating measures.