Megan and Glenn
Megan and Glenn

Critical illness leaves no area of life untouched. As a three year-old child, the youngest of eight, I witnessed the sudden death of my extremely athletic, fifteen year old brother, who unexpectedly collapsed just outside his bedroom door and died immediately from what doctors then declared to be an enlarged heart.  Their description of his death as "a freak accident, a one-in-a-million type of thing that had no real explanation" gave my family little comfort and left us with many unanswered questions. My parents, my six brothers and sisters and I  underwent intense testing. To everyone's relief, no trace of heart disease could be found in any of us. 

 Eventually, we went on with our lives with all seven kids actively involved in sports.  Then on November 19, 1990, when I was twelve and in sixth grade, I arrived home from my parochial school basketball game to find that my sixteen year-old sister had suddenly collapsed and died during her first day of varsity basketball practice.  The autopsy revealed an enlarged heart, and, after concentrated research on the part of some of the top cardiologists in the country, the disease was diagnosed: Arrhythmogenic Right Ventricular Dysplasia (ARVD). 

Not more than a week later, my entire family traveled to NYU’s Cornell Medical Center to be tested once more.  To our dismay, my then fourteen year-old sister's MRI and biopsy both turned out positive.  The doctors were baffled because neither of my parents showed any trace of the disease.  ARVD, which originated in southern Italy, is extremely rare in the United States and is not known to skip generations.  It seems that ARVD, although present at birth, does not appear until adolescence, and when it does, the first symptom is most often the last: sudden death.  Now we knew why my sisters' tests following my brother's death were normal, although they both suffered from the disease.

 A freshman in high school, my sister was required to cease all physical activities.  For many people, this requirement may have seemed trivial or inconvenient, but for my sister, who was heavily involved in sports and an avid runner, this was, as she put it, "a punishment worse than dying." In addition, she immediately underwent open-heart surgery to implant a cardiac defibrillator in case her heart should enter into an irregular rhythm. Her physical recovery was long and hard, but the psychological effects of her ordeal were even worse. 

Depression resulted from the knowledge that she would never be able to return to competitive athletics and from the reminder of her condition in the well-defined shape of a defibrillator the size of a walkman protruding from her abdomen.  She would have temper tantrums in dressing rooms, and  shopping for prom dresses and bathing suits was nearly impossible. Although she had a size four waist, she frequently had to buy clothes up to a size eight in order to be comfortable.  I was always sympathetic, even though I remember wondering to myself why she complained and thinking that she should be happy that she's alive. 

How could I understand what she was going through?

 Meanwhile, I continued in my athletic pursuits.  Although my sister was my biggest fan,  it seemed so hard for her to sit on the sidelines watching me on the court.  When I would come home from a game, complaining about my performance or about a referee's call, she would remain silent.  I just figured she had lost interest in sports. Starting as a freshman in high school on both the varsity soccer and basketball teams, I was already hearing talk of college scholarships.  My coaches, family, and most especially, myself had huge expectations for me. 

In the meantime, I continued medical testing every six months.  All my tests during my freshman year were negative, so it was assumed that I would not come down with ARVD, since at that same age, my sister's tests had revealed her diseased heart.  There was no doubt in my mind that I was healthy.  I was running six miles a day, playing sports, and had no signs of fatigue or "missed beats” that were so evident in my sister. 

The day before my first basketball game of sophomore year I went into New York with my mother and oldest sister for what I thought would be routine testing. We arrived at the hospital at nine in the morning.  Because I was resistant to the type of anesthesia I received, I was in complete agony for the hour it took the doctors to complete my biopsy.  In addition, I found I was allergic to the injected contrast dye when I suddenly couldn't breathe. I thought I was dying…right there on the table. 

Since I am extremely claustrophobic, I am not particularly fond of MRI's.  And because the doctor discovered a few questionable places on my heart, I was kept in the MRI tube for an hour-and-a-half!  The day finally over, we left the hospital and did not arrive home until nine o'clock that night.

The very next day, as I was changing into my basketball uniform- I answered the phone to hear my cardiologist's voice on the other end.  As usual, I put my father on the phone.  Feeling curious, however, I decided to eavesdrop to assure that his news confirmed my expectations of normal test results. 

That one phone call changed my life forever. 

My MRI and biopsy were abnormal. I, too, had ARVD. 

In addition to learning that I would have to undergo open-heart surgery just after Christmas, I was told I could no longer participate in any competitive sports. These words brought my entire world crashing down around me. Although both scared and angry, I tried to be strong to cushion this shocking blow to the rest of my family, and I quickly became very skillful at keeping my emotions inside.

On January 4th, 1994, I underwent open-heart surgery to receive an implanted defibrillator.  The stretcher ride down the corridor to the operating room seemed like the longest one of my life, and as I watched my family disappear out of sight, a mixture of fear and doubt filled my head.  Thoughts like, "Will I ever see them again?" continually ran through my mind.  My bladder was paralyzed for awhile as a side effect of the anesthesia, but the operation was free of any other complications and after a week-long stay, I returned home.

My recovery was hard and involved frequent trips back to the hospital.  Although the physical healing and discomfort was difficult to endure, the psychological effect of  the harsh reality of the disease itself was a much greater burden. 

Opening my closet to find that my clothes no longer fit around my waist and realizing that I had gone from a size five to a size eight was frustrating.  Wearing a bikini to the beach provoked startled stares and comments like “ooh, that’s so gross!”. And my inability to walk through metal detectors proved  embarrassing at airports and amusement parks. 

I joined my sister on the sidelines, and my outlook that had been so narrow shifted dramatically.  Now I could actually feel how difficult it was to be a spectator.  I now understood why my sister would turn silent when I would complain about the outcome of a game.  My stomach would churn when my friends would moan about lack of playing time or bad performances and I would think, "What are they complaining about?  At least they're able to play."

 My battle with a critical illness changed my perspective on life. I felt like I grew up at least twice as fast as the other kids my age.  They would start their days with thoughts of boyfriends and shopping, while I would wake up each morning thinking how lucky I was to be alive.  I was able to appreciate life so much more because I realized how easily it could be taken away from me. Although it took me a while to recognize it, this outlook was an incredible gift.  For all that I had lost from my struggle with ARVD, I had gained in the opportunity to recognize and appreciate the important things in life.

Although my family, friends, and even doctors were extremely sympathetic and tried to understand what we were going through, it seemed that my sister was the only one who could truly empathize with me.  I came to realize that those who have encountered serious illnesses can relate to each other so well because they have so much more in common.  They can understand the fears, doubts, and frustrations that accompany such illnesses because they have experienced them on a personal level. 

As I have learned from my experience, illness involves both a feeling of loss and an incredible sense of opportunity.  All that you lose or gain in your struggle with an illness, both physically and emotionally, stays with you for the rest of your life.  As my defibrillator has thankfully only had to discharge once, I still hold the fear in the back of my mind that it could shock me at any time.  Naturally, I am apprehensive about the chance that one morning I might not wake up or that my defibrillator might not do its job. 

Even at nineteen years old, I already worry that my kids, someday, will also be born with ARVD and have to go through what I've been through. These thoughts are with me now and will probably stay with me. However, my determination to appreciate each new day for simply being just that and my ability to recognize the truly important things in life will remain with me as well

My mom and me!

   Mom and me
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Joan Fleitas, Ed.D, R.N.
Associate Professor of Nursing, Fairfield University 
Fairfield, Connecticut  06430

Last updated: June 11, 2001