by James Gesner
Every time I wake up in the morning, or get ready for bed at night, I have to open my bed side table drawer and take my heart and pain medications. That’s when I remember that look. I remember that look the doctor gave me when he shuffled into the room, looking at test results on his clipboard. When he looked up, and his whole face was drawn and pale, his white of his eyes were bloodshot. Then he let out a slight sigh, clasped that clipboard in his right hand and put his left hand on his hip that he had those bright blue scrub pants on. Then he said those nine magic words: “Well, it looks like you are in heart failure.” His bushy eyebrows were drawn high and his brow wrinkled as he finished my diagnosis, as if bracing himself for a round of cursing and wailing. I looked at my wife first; she was a newly registered nurse at the time, and we had been married less than a year. “Ok.” I said clearly and calmly.
“Well…” That look again. His eyebrows were back down, now a befuddled look of “Don’t you know you’re dying? You are dying! Your heart is so screwed!” was on his face. “Well,” he started again, “we should run some more tests, and our cardiologist will be down real soon to talk to the both of you.” His eyes were darting back and forth from me, sitting up in my hospital gown that never seems to quite cover your entire ass, and my wife who was standing at her full five feet and holding on to the beds guard rail, and looking paler than usual. “Got it, thanks.” I said again, and even offered a small smile. I think that last bit flabbergasted him. I wouldn’t be surprised to learn if he was considering to call down a psychiatric consult at that point. But in all honesty, in that moment of learning what was wrong with me, I had felt a little relief.
I knew what was wrong with me, finally. Knowing something is wrong with you; feeling it in your bones and soul; and never getting someone to offer you a real answer as to why, often treating you like a hypochondriac just wasting their time, is a nightmare. After countless trips to the Emergency Room to multiple hospitals, and being sent home, time after time with the wrong diagnosis, I finally had an answer. The first time my wife brought me to the ER, the doctors gave me a look like I was wasting their time. “Probably just a bad cold, virus or something…” Some snippy ER intern told us. “Go home, drink lots of water and get some rest.” Worst advice they could have given me. But we listened to the doctors. Home we went, water I drank, and then, back to the ER two days later.
Same Emergency Room, different doctor this time. After waiting over 4 hours, since I was not considered in critical need of care, he looked over my previous chart and gave me a look of exasperation. “We can get you a chest x-ray or 3rd CT,” He was talking to my wife more than to me, as she was the one in the nurses scrubs, “But my guess is that you might have developed walking pneumonia.” He didn’t even bother to draw any blood or check for edema, after we told him I was having trouble urinating and having trouble sleeping when laying flat. My wife, Emily, was getting pissed, she knew something was wrong, but she also worked at this hospital and didn’t want to overstep her place since she had just started working there. After the x-ray and a couple more hours of waiting, we were sent home with another sigh and a nod with the same, “Yeah, there appears to be some fluid in your lungs. Walking pneumonia is probably the problem here. Get home, get some rest, with plenty of clear fluids only.” We went home.
Two more trips and gaining another 40 pounds of weight in a week was the last straw for Emily. I couldn’t breathe anymore when I laid down and couldn’t make it up a flight of stairs without being drenched in sweat, out of breath and nearly passing out. She barreled into that ER, took me straight back to a bed, and started screaming at the nearest attending physician. “If you don’t admit him, and draw up his labs, I’m going to leave him here!” She was threatening to abandon me at the hospital, but it was out of love, really. They finally sent a nurse in to draw some blood. She gave me a look of indigence. I seemed fine, she obviously had better things to do. After all, it wasn’t like I was dying or something.
An hour after that is when they moved me into a private room on a new floor, and that doctor came in to tell me I was in heart failure. He told my wife that if we had waited even another day, I probably would have died. If Emily had not been so forceful with the staff, I would have died. “We, you…just don’t see people this young in congestive heart failure.” And he was the first to give me that look of pity. That look that will make your blood boil the more you see it. It will make you avoid eye contact as much as possible. Emily would tell me later on that the cardiologist told her that she never had a patient, especially one so young, take the news of something so grave, so well. “He’s strong, but…it’ll come out eventually.” She was right.
Over the next few months, I spent most of my time in that adjustable hospital bed with the itchy yellow sheets. But nothing was more uncomfortable than that line of doctors and nurses who would file in and out, just to see the youngest patient on the cardiac ICU floor. Because every time some doctor would come in, look at my chart and see that my echocardiogram showed that my ejection fraction was at <10%, I’d see that look. A normal echo is 75. Which meant that my heart was barely pumping any blood, and every wall of my heart was moving abnormally. After they read that, is when I’d get that look. “They deal with people having heart attacks every day, whats the big deal?” I asked Emily after 5 cardiologist residents came in to inspect me like a lab rat. “You’re a young adult. They deal with geriatric’s or babies. You’re not supposed to get congestive heart failure when you’re 22.”
They did every test. I had better cholesterol than my doctor. I had no clogged arteries. They found no strange bacteria infection or lingering virus. So they call what I got diagnosed with as, idiopathic cardiomyopathy. Which translates into: We don’t have a fucking clue, or; the least common type of congestive heart failure with no known cause. I hit the crapfest lottery and no one could tell me what the winning numbers were. So I would get that look of, you’re sick, we don’t know why, you’re probably going to die soon, sorry we can’t help you. If we had stayed in Houston where all this happened, I have no doubt in my mind that I would not be here. I would have died. Looking back now, on the comedy of errors that occurred, it’s amazing that I did survive despite their greatest efforts to vanquish me.
But Emily realized I needed a higher standard of care, and sent me back to Boston. Where they got my meds right, got my heart pumping almost normally and most importantly didn’t look at me like some sort of experiment. So when I reach over, and unscrew that white child proof safety top to my medicine and remember that look, in my mind I’m telling every one of those doctors to go to hell, I’m still here.