Patient Perspectives: Inside the Life of a Young EP Patient

Michaela Gagne, Miss Massachusetts 2006. Friday, April 21, 2000 was a day I will never forget. I was 17 years old and sitting at the dinner table, about to take my first bite of salad, when the phone rang. My mom answered, and soon the tears began streaming down her face. I knew right away that the tears were for me. The doctor was calling to confirm I had the life-threatening heart condition called long QT syndrome (LQTS). For two years we had waited for an answer as to why I had collapsed at the finish line during a track meet. After that, my world as I knew it came crashing down. I realized I would now have to live my life without the one thing I had felt most defined me: sports. There is nothing in the world I loved more than the thrill of athletic competition. In high school, I was a record-breaking, varsity-lettering, three-sport captaining athlete. All I wanted was to compete for the rest of my life. Now there would be no more playing basketball until the streetlights came on. No more racing my friends on the track. No more hopes for Division I soccer. Not only was my true passion taken away from me, I was told that my heart was a ticking time bomb that could go off at any moment. I was confused, angry, sad. At the time, I could barely find any information on my condition, and found virtually no support with regards to meeting other young women with heart conditions. Despite the amazing support of my friends and family, it was the most alone I have ever felt in my life. I felt like a freak. It seemed the odds were against me. But…I was alive, and I had been given a chance. My world took a turn for the better the day I decided I would concentrate on what I had, not on what I didn’t have. I threw myself into my artwork, concentrated harder than ever on my academics, and then made the most unlikely decision of my life: I decided to enter a beauty pageant! If you had known me then, you would understand that I am probably the least likely beauty contestant. Ever since I could walk, I would have rather chosen to roll around in the dirt or play ball with the boys than wear a dress or brush my hair. But I saw the pageant as a new form of competition, a way to fill the void. Even though I walked across the stage like a football player in my swimsuit and heels, I actually loved the experience, because I was able to speak to the judges regarding my platform issue of lethal heart syndromes. My pageant experience can only be described as empowering and therapeutic. I still missed being an athlete, though. I missed everything about it. Michaela participating in soccer. So I started researching implantable cardioverter defibrillators (ICDs) and soon asked my doctor, “If I get one of those metal things in my chest, will you let me play sports again?” He agreed, and one month before entering college I had my first ICD implanted. I was the only person in the waiting room under 60, but I didn’t care. I was safe now, with no restrictions on my life anymore. I soon returned to soccer, and it was one of the best days of my life to lie on that field after playing. Of course, now I had a little ‘pageant’ in my blood too! Displaying the new scar on my chest that the athlete in me insisted was a war wound, I returned to the stage and worked hard. In June of 2006, I won the title of Miss Massachusetts, and in January of 2007, I proudly walked across the stage as a contestant in the Miss America Pageant. Backstage, one contestant asked me if I wanted to borrow make-up to cover my scar for the swimsuit competition. “No, thanks,” I told her. “It’s a badge of honor.” I am now a national spokeswoman for the American Heart Association’s Go Red for Women campaign, and have also been able to speak on Capitol Hill several times about my story. I am a strong state and national activist for the mandate of automated external defibrillators (AEDs) in public facilities, in addition to being a spokeswoman for Parent Heart Watch, the Sudden Arrhythmia Death Syndromes (SADS) Foundation, and Heartbeat International. I love these groups, I love the people I have met, and I love my work. The best part of my role has been speaking to other cardiac survivors, especially children and teenagers. I encourage them to view their conditions with a new sense of hope. Heart disease does not have to define you. I have developed a great attitude about my long QT and ICD. I view it as a strength rather than a weakness. Anyone who knows me can testify that my sense of humor and perspective on life have become incredibly strong since my diagnosis, and I continue to simply be grateful that I am alive and healthy. In reflecting on my experience, I believe there must be much consideration given to a patient, especially a young person, who has a heart condition. I often think that a whole new category of doctors needs to exist for patients who are between being children and adults. Children’s hospitals can be amazingly friendly atmospheres, but when you don’t quite qualify for that age bracket, you find yourself in a waiting room with the elderly. I do not fault my doctors in any way for my emotions during my diagnosis…I realize that I was a unique patient to most of them. I simply think about my work as an art teacher who instructs students 4-19 years old, and I recognize that connections and support must be made via very different methods with various age groups. I blanked out most of the conversations with my doctor when I was initially diagnosed, and only when I left that hospital would I allow my mom to help me process what had been said. Denial played a huge role in my life at that point. For many years, as I sat in the same hospital for my periodic check-up, it still felt so cold to be there. Later on, after receiving my Master’s Degree in Art Therapy, I realized the important role this type of therapy and others could have played in my life during my struggles. Therefore, I would encourage caregivers and medical professionals to seek out any sort of special services that might resonate with their patients. I would also encourage patients to find other amazing places within themselves. Additionally, physicians should provide any connections possible to patients with similar experiences — a genuine sense of support might come only from someone with a common experience. Each patient must be treated as the unique person he or she is. Assess a patient’s individual needs, his or her mental and emotional state, and their sense of self-esteem and self-worth. Understand the personal implications that may exist on a cosmetic level; while it didn't bother me, a decent-sized scar and raised box under the skin of the chest is certainly among the top complaints I hear from other young female survivors. Also recognize the stigmas and stereotypes associated with heart disease and the role it can play on a patient’s perspective. I hate the thought that some people assume that I use drugs, I must not take care of myself, I am fragile, or I must not be healthy (I was even recently denied life insurance at 25 years old!). I never would have thought I could be the victim of a heart condition. I consider myself lucky, though — lucky to have a mom and dad who pushed to find answers, lucky to have doctors who cared, and certainly lucky to be alive. Because of my heart condition, life played out in a very different way than I ever could have imagined. However, in the end I wouldn’t change any of my history, because it has made me into a woman I am proud to be. I have now been given the privilege and responsibility to educate others and help save lives…it doesn’t get any better than that.