“Yep, That’s Me. You’re Probably Wondering…”
The videos all start the same way. Something bad has happened or is about to happen, whether it be a human mishap or an animal. Something is in the process of happening, bad, and then comes the sound of a record (for you kids, that is a vynil disc that us older people used to listen to music on), being scratched to a halt, as the event is suddenly frozen in time just before the actual mishap. Then music begins to play, normally the introduction from the Who’s “Baba O’Reilly,” a narration begins, “yep, that’s me. You’re probably wondering how I got here.” And the video continues with a different song, chaotic through the end of the incident. Normally, this can be found humorous as its purpose is to laugh at a bad choice that got the person into that predicament. These videos consist of people falling from ladders, kids heads stuck in stair rails, dogs caught with their heads stuck in buckets. You know, funny stuff.
Then there is me. “Yep, that’s me. You’re probably wondering how I got here.” I am not sure what music would be playing at this point, though I would much rather have preferred something comical as a result of ending up in the emergency room.
But yes, that is me. Upon arrival, I was placed in a hallway, not an open room or bay as pictured in front of me. By the way, that room remained empty the entire time that I was in the ER. In fact, I remained in the hallway, for more than four hours. Anything that was done to me, such as bloodwork (you can see the bandage on my hand), an EKG, and a chest x-ray, were all done in a public hallway. To be clear, that room across from me which could have given me privacy, was not the only empty room, there were seven others. But I sat in a hallway having all these things done out in the open in public.
I have been to the ER more times than I want to admit during my cancer survivorship, enough that I would have to take off both of my shoes to count, especially in the last fifteen years, all attributed to my late side effects from my cancer treatments.
As the picture shows, my right arm is swollen compared to my left arm. As someone with congestive heart failure, swelling is not uncommon. It is also not good. I take medicine for it as it is. But this was a new swelling, accompanied with some pain, dizziness, and an increase in fatigue. I needed to be in the ER in the event I was dealing with any kind of circulation issue or even a potential blood clot, which would be fatal. So, that’s how I ended up there.
Anyone who has ever been to an ER, knows you can be sitting there a long time. As I said, I was there over four hours. I did not object to anything they were doing, even though I was sitting in a hallway, with everyone walking past me as it was being done. I even commented to the nurse, was there something directed by my insurance not to put me in a room. The nurse seemed to be insulted and explained to me, he had no idea what insurance I had. But here’s the thing, the person in triage did. So, what other explanation could there have been for keeping me in the hallway with seven open rooms in the hallway? That was the least of my concerns.
If you follow “Paul’s Heart”, you know I have a lot of medical knowledge, though clearly not enough to earn me an honorary degree. No matter who I am seeing, a doctor, nurse, the ER, even my dentist, I begin with, not “yep, that’s me…”, but “I am a 37 year Hodgkin’s Lymphoma survivor, with a multitude of late side effects from the treatments that saved my life, 4000 rads of ionized radiation and toxic MOPP-ABV chemotherapy. The damage involves cardiac, pulmonary, gastroenterology, endocrine, skeletal, muscular, ocular, and so on.” You would think this was not just a good thing to do, but important to let them know I was not a “normal” patient they were dealing with.
Have you ever heard of the phrase, “a bricklayer telling the engineer what to do?” Engineers don’t like that. Because while bricklayers understand the physical routine of construction, it is the engineers that deal with soil mechanics, stress distribution, and safety concerns. Can you see the comparison? Me explaining to the doctor my body?
But here is the thing, if I don’t, mistakes can be made, judgements creating dangerous outcomes. My health records are all at their fingertips literally because of the paper reduction act. All they need to do is look, but I know they won’t. I have been there time and time again. But clearly, when I met the doctor, the engineer, she was put off by me, the bricklayer, explaining my history. I would not see her for the next four hours, just sitting in the hallway, staring off, watching others be placed into a room in the ER, eventually the one in front of me. But I remained in the hallway.
There had been no updates on the bloodwork, EKG, or chest x-ray. I had been told nothing. I saw the doctor walk through the hallway, but she said nothing as she passed. No one had payed any attention to me, in spite of not being able to miss me sitting there in their way. I had had enough. Clearly there was nothing imminent or urgent otherwise I would not still be sitting there, ignored. I wanted to be discharged.
I had visits with my own doctors already scheduled previously, in two weeks. As what was happening, did not seem a priority or urgent, I felt I had time to wait until my appointments when my doctors who know me, could do their evaluations. Simple enough. Just as I was getting off my chair to request the discharge, here came an orderly, “I’m here to take you for a CT scan.” I looked at my caregiver and then back at the orderly,”CT scan? I know nothing about a CT scan.” He reported his instructions to transport me. Just then the nurse came by and I proceeded to tell him I was already scheduled to have a CT scan as my regularly scheduled visit with my follow ups and I did not want the repeat CT done, exposing me to more radiation. Plus, I have no idea what is going on? Where are the results of everything else? What is being considered?
At that point, after four hours, the doctor finally poked her head out and interjected herself in the conversation, explaining what she wanted to do. I told her first, I have no idea what’s going on as no one has told me anything, and two, I am having this done by my cardiologist I normally see in two weeks. I was frustrated by how I was being treated, not being talked to, and admittedly, I could have been making a huge mistake demanding my discharge. But I had a huge problem at this point.
Lack of trust. Complete lack of trust.
I breezed through the first half of my cancer survivorship with no issues. But once I experienced my first issue, a “widow maker” blockage of the main artery to my heart, eighteen years ago, the foundation of my care, every decision made, demands trust. And I had none with this doctor. And she could have been the best, I consider where I was one of the best hospitals. But my quirk, was a deal breaker.
As is a right of the patient, I requested to be discharged “against medical adice,” or AMA. Was it the right decision? Was it the smart decision. I have several fellow survivors on both sides giving me support and criticism. Only time will tell. I see my regular doctors next week, and I am having that scan done as I said it would happen. So, I am not avoiding anyone or anything. I am not afraid. Please, all of the things I have gone through, this is just another to me.
But I cannot help but wonder, had I been put into a room instead of leaving me in the hallway, ignored, if things would have turned out differently. I know myself well enough, that answer is yes. Stay tuned to find out.
Paul's Heart 