Discovering My Unknown Heart Condition

My name is Andrea Burgel, and I am a heart disease survivor. I am a 37-year-old mother of two wonderful children, and I have been married to my high school sweetheart for more than 15 years.

Learning About My Heart

My heart disease survivor story consists of years of knowing, as a woman, that something wasn’t right in my body; years of seeing multiple physicians; years without a diagnosis or explanation as to why I was feeling the way I did – and years without a solution.

Beginning at a very early age, I experienced heart palpitations, lightheadedness and nausea. And, on one occasion, I even passed out. Throughout my journey, I saw many different physicians and my symptoms were even diagnosed as anxiety in my early 20s. I was frustrated. But, like many of us women do, I believed what my doctors told me: that I was stressed and anxious and that my heart was healthy. So I continued on.

Occasionally, my doctors would place me on a Holter monitor, and each time they didn’t catch any events in the 24 hours I was wearing it. So, to them, I was fine. But I knew i wasn’t.

In the fall of 2011, I experienced abnormal heart rhythms so strong that I had waves of nausea and lightheadedness. In the past, my palpitations would eventually go away, but this time was different. The rhythms were constant, and not going away. I was under a significant amount of stress at the time, so I let it go for a couple of days.

Finally, I called my primary care physician, which resulted in an abnormal EKG. Again, I wore a Holter monitor and was scheduled for multiple tests and an appointment with a cardiologist— right in the middle of the holiday season.

A Family History Lesson

Before my appointment, at a family holiday gathering, I learned from relatives of our history of genetic heart disease on my father’s side and discovered that many of my distant cousins had been diagnosed with either Brugada Syndrome or long QT syndrome, both genetic diseases. My cousins had defibrillators placed as a result of their diagnoses. The symptoms I had been experiencing my entire life were exactly what my relatives were describing.

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I was relieved to think that I was finally going to get answers to the issues I had been experiencing for so long at my cardiologist appointment. However, the doctor concluded that all of my tests and scans were within normal ranges and that the structure of my heart was in great shape. I was devastated. Once again I had no answers.

Participating in an EP Study

Because of the abnormal EKG and my family history of heart disease, the doctor sent my chart Kamala Tamirisa, MD, an electrophysiologist who assesses, diagnoses and treats abnormal heart rhythms. A few weeks later, I received a call from Dr. Tamirisa’s office, explaining that after reviewing my chart she felt it was very important that I schedule an appointment with her.

Dr. Tamirisa was amazing! She explained how the electrical side of the heart worked and how mine was working, or not working. Dr. Tamirisa conducted an EP study to determine the possibility of needing a defibrillator. On the day of surgery, I was scared, nervous and relieved all at the same time. I had gone for so long without answers and now I had answers. Before the surgery, we decided that Dr. Tamirisa would speak to my husband about the results; and while I was still under anesthesia, he would help make the decision to place a defibrillator.

My husband and I decided the answer would be “yes”—no matter what the results. My family needed me to be around, and if this could ensure that, it was worth it.

My EP study was abnormal and showed I had sudden death and unmasked Brugada syndromes. My husband and Dr. Tamirisa made the decision to implant the ICD. I was discharged later that morning with strict instructions of not lifting my left arm for a few weeks to ensure the wire—that was now running through my heart—would stay attached.

All I wanted to do then was go home. My children were 9 and 7 years old at the time and they were scared. All they knew was that mommy had something wrong with her heart and a wonderful doctor was going to make her all better. For the most part, my recovery was, uneventful—except my incision was difficult to heal.

Lessons Learned

Overall, I live the same life that I always have—with some minor adjustments, and now I take daily medication to regulate my heart. The combination of the medication and the defibrillator has made significant differences in my health. I have a home monitor device that records my heart rhythm and sends reports to Dr. Tamirisa’s office and I see her for check-ups every six months. On occasion, I still get a flutter or palpitations, but not to the extreme they once were.

Awareness, education and research are the keys to treating genetic heart disease.

I share my story to inform and inspire you. I’ve come to realize that awareness, education and research are the keys to treating genetic heart disease. Had I not learned my family history, I could still be living without answers, or I could have suffered from sudden cardiac arrest and been taken away from my family. I thank God every day for bringing Dr. Tamirisa into my life.

Andrea Burgel was a speaker at the Toledo Go Red for Women Luncheon 2016. Learn more about the American Heart Association’s Go Red for Women campaign and learn more about ProMedica’s heart services.