The Anecdote That Didn’t Make It Into My Final Essay…

One of the most devastating aspects of my brother’s death was that it was so unexpected. My brother died days before his high school graduation. Prior to that, he had plans to attend college and join the Army Reserves. My brother and I were raised around the dangerous streets of Paterson, New Jersey, so these were the ambitious goals of a kid who could have easily become a statistic, a victim of drugs or gun violence. Therefore, my mother worked overtime to keep us safe and out of trouble.

Months before my brother’s death, he asked our mother if he could attend a house party, which happened to be on a rougher side of town. My mother said, “Absolutely NOT!” My brother was disappointed. However, he was glad our mother wouldn’t let him attend. A week later he mentioned the party to my mother. It turned out that a fight broke out and a couple of girls started throwing lye on each other. Several teenagers at the party suffered from chemical burns and scarring.

The irony is that although my mother did everything she could to shelter my brother from drugs and violence, she couldn’t protect him from the cardiovascular disease that caused his death.

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I’m in Love with a Little Thing Called Zotero

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I wasn’t sold on Zotero when one of my professors introduced it to the class. It must have been a part of the learning curve, the point where you go from “totally clueless” to “this is starting to work.” Well, when I finally got the hang of it, I was amazed at its convenience. Zotero is an online tool that helps you collect, organize, and cite research materials from various sources, such as books and journals.

To my surprise, Zotero was an invaluable tool as I started researching the hypertrophic cardiomyopathy that caused my brother’s sudden death. The best thing about it was that I could search through my school’s online library, click on a single icon, and all the reference information would automatically save to my Zotero library. It was also useful because Zotero stored all the journal articles and ebooks in one place, so all I had to do was log into my Zotero account and pull up all the pdf files containing the documents I needed. I wish I had discovered Zotero sooner.

Final Goodbye

I am sitting at my computer (hm that’s probably obvious) and reflecting on my research thus far. I learned so much. I found out that my brother played basketball AND football. He was a popular, star athlete who the teenage girls loved. He was fiercely loyal to his close friends. He loved me, his little sister. He played basketball everyday after school. There was no air conditioning in the gym the day he died. There was a woman there that day who refused to perform CPR. He could have been saved. He could have lived a long, full life. He could have continued playing basketball. He could have watched me grow up.

I’ve harbored resentment in my soul for my entire life, but most of the time, I have been able to keep those feelings at a distance. Now, as I sit here going over everything that I’ve learned, I am angry. Why wouldn’t Judy Kaplan save my brother? Why couldn’t she see her own son or brother in his eyes that day. I suppose after twenty-two years there’s no use living with regret, but I can’t help it. I am probably being selfish, but my life would have been much different if my brother would have been around to protect me. I will regret that for as long as I live.

However, now, it’s time for me to close this chapter. Writing the final essay about the death of my brother will give me the clarity that I’ve been searching for. But, I am nervous to write about my experience because I don’t want to disappoint my brother. I hope to fully capture who my brother was and why his death was such a devastating loss, not only to my family, but also to my community. Although I long to have my brother here with me, I suppose I was meant to be in a position where I can educate young athletes on the effects of heart disease and make my brother live forever through the words of my final essay.

Do I have the Bad Gene Too?

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…

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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.

SCENE

Heart Anatomy

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.

ECG

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.

REFLECTION

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.

Drilling Down Through the Sources

1) “Screening for Hypertrophic Cardiomyopathy in Young Athletes”
The New England Journal of Medicine

Although it has been discovered that the majority of sudden cardiac deaths (SCD) in Italy are caused by some form of heart disease, there is a low percentage of deaths that are related to hypertrophic cardiomyopathy (HCM). However, in the United States, HCM is a principal cause of cardiac arrest in young athletes. From 1979 to 1996, there were a series of pre-participation cardiovascular evaluations at the Center for Sports Medicine in Padua that concluded that the low prevalence of deaths caused by HCM was a result of pre-screening and thus detection of HCM and disqualification from athletic competition.

Here are the numbers:

A. 33,735 (participants in study)
B. 11 to 35 (age range of participants)
C. 269 (cases of sudden cardiac death)
D. 220 (sudden cardiac deaths in non-athletes)
E. 49 (sudden cardiac deaths in athletes)
F. 40 (deaths occurred during physical activity)
G. 1 (deaths caused by HCM)

2) “Does Sports Activity Enhance the Risk of Sudden Death in Adolescents and Young Adults?”
Journal of the American College of Cardiology

This report builds a case that identifies the link between SCD and athletes, and it uses the article from the New England Journal of Medicine as a basis for the extended research. Although the article above reported that the number of deaths in athletes was significantly less than in non-athletes, researchers have discovered that there is, in fact, a link between cardiovascular diseases, such as HCM, and sudden death in athletes. Participation in competitive sports does not cause SCD; however, it certainly exacerbates the symptoms in athletes with heart disease. Therefore, screening is essential to aid in the prevention of sudden death in athletes.

3) “Athlete’s Heart or Hypertrophic Cardiomyopathy?”
Clinical Research in Cardiology

This article answers the question: Are functional and structural changes in the cardiovascular system a result of intense physical training or underlying heart disease. The answer is both. Athlete’s Heart and HCM both show signs of critical left ventricular hypertrophy. However, Athlete’s Heart is a result of high endurance training, which causes changes to the heart. The difference with hypertrophic cardiomyopathy is that the heart of HCM patients does not respond to detraining because HCM has a genetic link; whereas, the heart of a patient with Athlete’s Heart shows signs of regression during detraining. Since the hearts of HCM patients do not respond to detraining, this article uses the report from the Journal of the American College of Cardiology to show that SCD is increased in athletes.
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The commonality between each of the articles summarized above is that HCM is caused by a mutated gene, and the symptoms, including sudden death, are heightened by intense endurance training. However, sudden deaths can be avoided by pre-screening athletes and disqualifying them from competitive sports, if necessary. The first article was a building block for the subsequent articles because it provided statistical evidence that proved that nearly every case of sudden death occurred during physical activity, and the incidence of HCM was low because Italy had a twenty year history of pre-screening its athlete’s for heart disease. The second article was a follow-up study to the first article that further explained that there is a definite link to SCD and athletes. Both of these Italian studies were critical in understanding SCD because the studies showed that, in Italy and Germany, sudden deaths were caused by varying forms of heart disease, one of which is HCM. The third article showed that high endurance training can cause the condition, Athlete’s Heart; however, it should not be confused with HCM because HCM is not reversible with lowered activity, rather it is made manageable and sudden death can be avoided. The takeaway here is that HCM is one form of heart disease that contributes to sudden death in athletes, especially young athletes, if it is not detected early.

My Research Gold Didn’t Glitter

I eventually decided to send Dr. Lawless the list of questions that I had after talking to my mother and doing some preliminary research. It had been a couple of days after I sent the list when she finally responded. I was overjoyed because she actually took the time to help me out despite her busy schedule. However, as I read her answers to my questions, I was a bit disappointed. Her answers were generalized, answers that I have already gotten through my preliminary research. There were two causes for this: my questions should have been more specific and the interview would have been more successful had it been a telephone interview. Although I did receive some good insight, it wasn’t enough to propel my research forward, but it did fuel my need for more answers. For example, Dr. Lawless said there was only an apparent prevalence of sudden cardiac death in male athletes, but the statistics didn’t support this theory. That was unsettling because every case of sudden cardiac death that I have read about involved athletes. Also, the doctor mentioned a link to my brother’s condition and a heart arrhythmia, which could have been defibrillated in time to save my brother’s life. The entire interview gave me greater unease than when I started. However, I have a telephone interview with another cardiologist coming up, so hopefully, I can get to the bottom of this.

Old Wounds Reopened II

Interviewing my mother for this research project allowed me to employ the use of creative interviewing. Creative interviewing, as described in Postmodern Interviewing, is “driven by…friendly, caring, and adoring feelings, but adds to those an endearing, wide-eyed sense of wonderment at the mysteries unveiled.” This sentiment is definitely true because my mother and I were able to share the love and adoration we both have for my brother, thus we also shared a mutual disclosure of our thoughts and feelings, which made my mother more comfortable with opening up.

During the course of the interview, my mother and I went through a box filled with my brother’s last remnants, including old report cards, photos, and mementos from his funeral. This was the first time I had seen any of those things, so I was pleasantly surprised that my mother was ready to share that with me. I am not sure if it was because I never asked the right questions, but I also received an abundance of information about my brother’s death. The biggest things I learned was that it was hot in the gym where my brother played basketball that day, and when he fainted, there was a woman on site who was trained in CPR but refused to perform it on my brother. That will always leave me wondering if he could have been saved.

Hearing my mother’s perspective on the events surrounding my brother’s death was invaluable to my research because she is my primary link to my brother. She also let me read the autopsy report, which was the building block to my research. Now, I am trying to understand how a seventeen-year-old athlete can die suddenly and without warning.