During my recent visit to the VA ER, for my low blood pressure episode. Given that two days earlier I was at a civilian ER, and I was sent home with pancreatitis. Before my medical sleuths chime in about this going against typical treatment plans, I get it. But to be honest I’d rather suffer at home than in the hospital, the discomfort was manageable.

The visit to the VA ER was for a separate medical urgency. The fact that I was having coherent interactions while experiencing the vital signs of a corpse. Clearly I am patient Zero for the start of the Zombie Apocalypse 🧟‍♂️.

Well as they try to determine what is going on, the team decided on a CT scan of my abdomen. Up to this point I’ve had little to no problem with laying flat, seven years into ALS, pretty darn good. Unfortunately, and I will explain shortly, I was unable to complete the CT.

I had begun to experience shortness of breath prior to the CT scan. Reflecting on the course of treatments in the ER, I quickly realized having received two liters of fluid rather fast. Did you know that rapid infusion of fluids can overwhelm the lungs. I informed the nurse, her response, hmm I don’t know, but I will ask the Dr. A minute later she returned and slowed the IV considerably, placing me on 2l of O².

Off I g to CT, transferred to the unit with a very small pad for my head. This is when it starts, a slow sensation of dread. Gradually growing with each exasperating breath, each shallower than the previous. Cresting with a whispered, straight out of Blumhouse horror scene, “I CAN’T BREATH!!” it was the longest 30 seconds of my life. Waiting to get transferred to the bed and having my head elevated. 30 seconds that felt like endless minutes on an empty tank of air 60 feet below the ocean surface.

Twenty minute later my breathing begins to normalize. This is the single worst, horrifying moment of my life. I know that the episode was exacerbated by anxiety caused by the diaphragmatic inefficiency, creating the air hunger I experienced.

I was desperate for a single solid breath just one. This is the reality of ALS, gradual loss with the occasional abrupt reminders that ALS has its own agenda.

That’s all we want, one more deep breath, followed by another, and so on.

Juan Reyes
TJO