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Share Your Story: Jene Hong

by Christy D. on Monday, June 9, 2014

Jene Hong Kansas

Throughout the course of my life I have had two strong yet contradictory thoughts.  One, our bodies are truly amazing and only a divine being could create something so flawlessly.  Secondly, my family would be healthy until we get “old”.  My parents had made many unhealthy choices regarding smoking, diet and lack of exercise.  I could understand that they might have health issues, but never imagined my children, husband and myself being affected by heart disease. After all, we are young, living an active lifestyle, eating right, and avoiding fast food. So I could easily understand my parents having several heart issues including peripheral artery disease, high cholesterol, high blood pressure and a heart attack.  Unfortunately I was wrong about the younger generations.   

When my son was born I remembered thinking how different his color was compared to his older sisters.  Initially, I thought he may just have fairer skin or maybe I just forgot what a newborn looked like.   After a night in the nursery, I was told that Tyler had a congenital heart defect, Tricuspid Valve Regurgitation Secondary to Epstein’s Anomaly.  He was indeed a different color…..bluish due to lower oxygen.   As any new Mom I was scared to pieces by this and afraid my little boy would die.  Six months before, a good friend of mine lost a baby girl to a CHD.  I remember not going to sleep unless he was sleeping on my shoulder or in my arms so that I would be able to feel if he stopped breathing.  There were many doctors’ appointments; I quit working full time to stay home with him as he had a compromised immune system that didn’t allow him to attend day care.  My son was not growing and gaining weight as he should.  He needed to gain weight before the doctors could perform surgery to correct his defect.  This was a condition that he could not simply outgrow.  I learned infant massage, we had a prayer group for him, anointing of the sick and at 10 months old, my dream came true.  I remember signing in at the cardiology visit and the nurses kept saying, “This isn’t a cardiology baby, he is too chubby and pink!”  After two rounds of tests, the doctor came in and said his heart is completely normal.  They showed me the study results and said we can’t explain it but his heart is completely normal.  My response, while crying, was “miracles happen every day, we just don’t give the Big Guy enough credit”. 

While this was an unbelievable outcome for my son, this was not the end of cardiac issues with our family. Shortly after Tyler’s miracle my life turned to the path of a single mom.  Several years later, I met my current husband.  Ironically, his daughter, who was a year younger than my son, also had heart issues. Her heart defect was not caught in the hospital but a few days or weeks later by her mother.  Her mom felt something was wrong as she was not eating well.  Her mom was a true advocate for her wellbeing! It turned out that she had such a large hole in her heart that upon listening to the heart no unusual sounds were detected.  She has had two open heart surgeries since then and is now only a teenager.  Unfortunately she will likely require additional surgeries throughout her life. After her 2nd open heart surgery, I was simply amazed how fast she bounced back from such a major surgery.  She was jumping down the hall like a bunny rabbit from her ICU room to her new room.   I had two thoughts about our common bond with heart disease. First, how odd that we had this connection-how common are congenital heart defects (CHD) and how often do CHD go without notice.  What could be done to make sure babies are screened for these defects before being sent home?  These two young children clearly illustrated the youngest members of our world CAN be effected by heart disease.

Unfortunately, this would not be the end of our immediate, young family’s experience with cardiac issues.  Within a few years of my husband and me dating, he had a cardiac incident.  I received a call on his phone from a man asking about his family history of heart disease.  I told him about his brother that died in his mid 30’s of a heart attack and his father had both a heart attack and a stroke.  I was told I should make my way quickly to the ER as he maybe having a heart attack.   On my way to the hospital I kept thinking, how could a 37 year old, former athlete, who still exercises regularly, be having a heart attack?  Once arriving at the hospital, I was thankful to be informed he was NOT having a heart attack, yet for unknown reasons, he had an experience where his heart rate was out of control; at one point over 200 beats per minute while at rest.  Typically his heart rate is 70 or below while at rest.  To bring his racing heart rate under control, he was shocked twice by the paramedics, while conscious, before being taken to the hospital.  We are thankful that no further treatment was needed and there have been no recurrences of this event.  It was a one-time event that has required no ongoing intervention.  

And our family story continues only this time, it was my turn.  I have had severe asthma and allergies since birth requiring many daily medications.  At the age of 32, medicines had improved to the point that I was finally able to exercise outdoors, doing almost anything I desired.  At that point I became an endurance athlete competing in over 100 triathlons, 14 Ironman and 7 World Championships.  At 48, things started to change, my breathing became difficult.   My asthma doctor recommended that I be re-evaluated at the Mayo Clinic. While there, the doctors performed a cardiology workup and found I had cardiomyopathy with reduced ejection fraction and enlargement of the heart muscle all on the left side of my heart.  They thought it might have been caused by a virus or infection.  My doctors encouraged me to continue living an active lifestyle but decrease the intensity of my activity which would allow my heart rate to stay in a specific range.  This would help to prevent any additional cardiac events.  With this in mind, I am working with my cardiologist to get back to “participating in” rather than “racing” races.  I hope to return to the ranks of active, yet slower, triathlete this year.  Of course there has to be a moral to every story, the moral of this one?  Be your own best advocate for you and your child’s health.  DO pay attention to your heart, even if you think you have no risk factors, as heart disease can affect anyone of any age.