The moment when I realized the disease that killed brother was genetic, I knew I had to see a cardiologist to make sure I wouldn’t be affected by the disease as well. I was fairly certain that I was safe, however. I joined the Army National Guard when I was twenty years old, and prior to that, I had never been physically active, at least not at the level of intensity the Army required. During basic combat training, I had to run one mile to test my endurance, or lack thereof. Thinking back to that time, I remember there was another soldier that passed away during the same one mile run because he lied to his recruiter about having a heart condition. Perhaps he had the same condition as my brother. Anyway, I was certain I didn’t carry the same bad gene, but it wouldn’t hurt to double-check.
After some research, I found Dr. Brian Drachman of Penn Cardiology in Philadelphia and immediately booked an appointment. Here are some of the notes I took during my visit…
TRANSCRIPTION (Here’s me trying to make sense of my illegible jottings)
1. Electrocardiogram (EKG), oxygen check, and heart rate monitor were all normal.
2. Dr. Drachman wants to review my brother’s autopsy report and my latest blood workup.
3. “That changes things.”
4. HCM develops in teenage years.
5. Physical activity exacerbates HCM.
6. Ryan Shay should not have competed in the Olympic trials.
7. Look into the story of Hank Gathers.
8. Echocardiogram (ECG) needed.
9. Three stickers connected to cables were placed on my stomach and chest.
10. I was asked a about a dozen times to hold my breath as long as I could.
There is something so fascinating that I find about the study of medicine, so as I walked up to Penn Cardiology, I was in awe. I remember thinking that lives were being changed in that building, maybe even my own. I made my way to Dr. Drachman’s office and checked-in with the receptionist. Doctors usually have bad reputations for rushing patients out the door, so they could meet their patient quota for the day. Therefore, I asked the receptionist if the doctor was a nice guy. She smiled and said he was funny. Whew. When I was finally called into the examination room, the physician’s assistant checked my blood pressure, heart beat, and oxygen. Everything was normal. In between all the tests, I tried asking how many patients had enlarged hearts, and to my dissatisfaction, she said she was new to the practice and couldn’t really answer my questions. I thought it was sad that she didn’t seem to invest in her patients. She was just there to do a job. Blood pressure. Done. EKG. Done.
Penn Cardiology was quickly redeemed when Dr. Drachman came in. He wasn’t as funny as the receptionist described, but he was kind and seemed to know what he was talking about. I, then, began to explain what happened to my brother. I continued explaining that the autopsy listed the cause of death as cardiomegaly and hypertrophic cardiomyopathy. “That changes everything,” he said. For a moment, I wondered what he meant, but I soon realized that HCM is genetic; therefore, he needed to examine my charts more closely. He told me that he would need to see the autopsy because there may have be information that could further help him review my charts, and he also wanted the results from my last blood work-up. After I finished giving the synopsis of my family history, I began my rapid-fire questioning. “If HCM is genetic, will my kids have it?” “Have you heard of Ryan Shay? He died while competing in the Olympic trials.” “How can someone live with HCM?” As my questioning came to a close, the doctor told me to schedule an echocardiogram then a follow-up visit a month after.
The next week I was back in Philadelphia for the echocardiogram, which like the electrocardiogram checks the heart’s electrical pulses but also takes an ultrasound of the heart. I walked into the testing area of Penn Cardiology, and I was taken to an examination room right away. I was instructed by the technician to strip from the waist up and put on a gown with the opening in the front. I, then, lay on the medical table, and the technician placed three stickers, which were attached by wires to the ECG machine, on my chest and stomach. The technician soon began rubbing a cool, jelly like substance onto my chest with a rotating metal ball attached to a hand device. As he rubbed the ball over my chest, he instructed me to hold my breath for as long as I could at least a dozen times. The entire process was really awkward, but the technician was kind, patient, and gentle. It was finally over. Now, I am waiting for the results.
As I began thinking about the ideal topic for this research project, I knew it had to be a topic that meant something to me, which is also why many of the ideas associated with ethnography resonate with me. “The ethnographer seeks a deeper immersion in others’ worlds in order to grasp what they experience as meaningful and important” (Writing Ethnographic Fieldnotes). This was why delving into the topic of my brother’s death was so important to me. As a writer, I believe my greatest gift is having the ability to share my experience and, in this case, my family’s experience with the sudden loss of a loved one. There was no one else who could have been as deeply immersed into this particular subject as I have been, so I feel privileged to share what I have seen and learned.
Meeting Dr. Drachman was incredibly helpful because, for the first time in my life, I have been able to understand and articulate the cause of my brother’s death from a medical perspective. I have only ever been able to explain his death from an emotional standpoint, so it’s amazing to be able to tell the full story. He died because of…and this is how i felt… For this reason, my time with Dr. Drachman was hugely successful. However, the only question I have left is whether I carry the bad gene. So, until then, I will be waiting with bated breath.