It's a cold, drizzly day today, just as it was three years ago. I had photos to take then, as I do today. On October 5, 2012, after a day of fatigue and abdominal pain that came and went, I went to the hospital emergency room, expecting to be checked out and summarily sent home (again) with no answers. It had taken three tries to do a handful of dishes that evening. Each time I went to the sink, pain in my abdomen and back forced me to retreat to a chair at the kitchen table. I had mentioned to my husband two times already that day that I thought I might need to go be checked out, but each time I talked myself out of it. "I just need to rest," I kept reasoning, "and I have a doctor's appointment next week." My throat kept painfully tightening and I had sporadic, searing pain over the left side of my face.
Deep inside, though, I knew that something was really wrong. I finally admitted that to my husband out loud, warning him to be prepared for bad news this time as we left for the hospital. "This time, they're going to find something. This time, it's bad enough that they can't miss it, whatever it is." Upon approaching the check-in, I told the hospital worker behind the glass partition with the little, circular hole that I thought I was having a heart attack, something I had never before admitted. Instead of sending me first to triage and then sending me back to the waiting room for two or three hours, they had me prepped and hooked up to an EKG in under five minutes.
People were undressing me and sticking electrodes all over my underwear-clad body by the time my husband parked the car. He walked into a room that looked like chaos, barely able to see me through the cluster of people surrounding me. Five hours later, a still-confused ER doctor admitted me. He had no definitive answers, but he was convinced that I was right. "This simply must be your heart," he said, shaking his head and saying that no test so far proved that diagnosis. Shortly after noon the next day, though, an angiogram did provide conclusive answers.
Stents were not a possibility. I had life-threatening, severe multi-arterial coronary heart disease. I would be strictly monitored in the hospital and remain on the heparin already dripping into my veins until open heart surgery could be scheduled. I couldn't get out of bed unless two hospital staffers were present, one on each side, or even sit on the side of the bed. That was Saturday afternoon and they were going to try to wait until Monday morning for my surgery, as all of the heart teams had already worked overtime that weekend. They would, we were assured, do emergency surgery if my condition worsened. I went from walking into the hospital on my own power to being virtually tied to a bed within a few, short hours.
The frantic phone calls to family members started, but this time they were talking about ME, the one who often did that sort of "calling" and who usually stood by with other family members while a loved one faced a medical crisis. And pray. Though I watched my loved ones arrive at the hospital throughout the next 24 hours cope with varying degrees of shock and fear, I was relieved, relieved that doctors had finally diagnosed me after five years of assorted tests that all seemed to conclude that I was a hypochondriac or hysterical.
Four bypasses and a few medical crises later, I am still here. In these last three years, I have been hospitalized several times and have had three additional medical issues that defied easy diagnosis. Just as with the heart condition that nearly killed me, I was reluctant to push each issue with medical personnel who didn't at first find anything specific. Each time, though, I pressed ahead and risked the disdain of medical opinion as I insisted that something was wrong. My personal physician and my cardiologist trust my instincts now, both admitting that I simply defy definition or easy diagnosis. Six months after heart surgery, a subsequent heart attack was diagnosed through another angiogram, though I seemed fine in the ER. When I told my doctor I thought I had pneumonia the next year, she said "I can't hear it," as she positioned the stethoscope on various places around my chest and back. "You being you, though, we'd better check this out," she said and ordered x-rays. Sure enough, there it was in my right lung and pleural cavity.
Two additional issues have now been diagnosed and treated; because I trusted myself enough to discuss strange symptoms with doctors, and they trusted my instincts enough to listen to me. Both conditions, intestinal malrotation (sometimes deadly and for which I have now had a difficult, extensive surgery) and trigeminal neuralgia (progressive but treatable), are rare and difficult to diagnose. Both are under control now.
I THINK I have learned that I should trust my own instincts. I THINK I have learned that "We can't find anything wrong" is not the same as "Nothing is wrong." I THINK I have learned that sometimes it takes many tries to find the answer; but once you do find answers, you can also find a new normal. Friends and colleagues often forget that I ever had any medical issues. During last year's Ice Bucket Challenge and again during Vacation Bible School's dunking booth, I had to remind several would-be challengers that I could not participate due to my heart condition. "Oh, sorry, I forgot." That is reassuring, indeed. Life looks pretty normal from my perspective now.
Still yet, though, I THINK I have learned that even doctors can be wrong. I HOPE YOU hear me, and I hope you can learn this lesson vicariously. "We can't find anything wrong" is not the same as "Nothing is wrong." I KNOW that it is important to pass that message along to others, because it could save a life.