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Starrfish

Silver Spring, United States

Mostly Veg

I lived in the California’s High Desert region as a child and young adult where I fancied an active lifestyle. I involved myself in everything and anything that was available to me in my school and community. I enjoyed softball, basketball, and volleyball and running on the school's track team. I also participated in local beauty pageants, and volunteer and fundraising actives. Yet, the prominent memory that I recall of all these activities were the physical symptoms I experienced which reliably tarnished my overall level of enjoyment. I remember frequent and unpredictable syncopal episodes, dramatic vision impairments (blind spots, stars, flashes of colors), pounding headaches, and a feeling as though my heart would beat right out of my chest. The most frustrating symptom was being constantly exhausted. As concerns over my health grew from my family, friends, school teachers, coaches and counselors, I frequented many doctor's offices. I underwent the standard liturgy of physical examinations, diagnostic tests, and laboratory analyses which generally arrived at the same outcome -- "I was a growing teenage girl who probably did not get enough to eat or enough sleep." Eventually, as a young teenager, there came a day when a clinical specialist made a horrific assessment that still emotionally haunts. He explained to my mother that I was malingering, that the symptoms I had been complaining of were cries for attention in the absence of any physical basis. Concerned, my mother had me visit a couple psychologists. Although they gave me a clean bill of mental health, I had slowly emotionally digressed, given that not one doctor could find anything wrong with me, and convinced that what I was experiencing was all ‘in my head’. For years after, I continued to ignore the symptoms as best as I could. Doctors and family members had me convinced there was nothing wrong with me. The emotional damage that is caused from people treating you as a burden or just an overly dramatic hypochondriac is unbearable. It also, so far, takes a life time to overcome. As soon as I graduated high school I moved out of my childhood home and into an apartment, worked part-time jobs to support myself while trying to take some college courses. Not too long after, I met an impressionable man, an Air Force military policeman. We fell in love, married, and moved to his new permanent station in Florida by age 22. This finally was my fresh start. I was not going to be the head case everyone perceived me to be. Once moved, I began work as a bank teller at a local branch. Life seemed to be very promising and was going well. Not long after we'd settle in, I began to experience more symptomatic episodes including fainting spells. I started missing work days. In my first Floridian summer, I fainted while at work and my work colleagues called an ambulance. This medical encounter was unlike any other prior. The doctor attending to my care explained that I suffered cardiac arrest and was further diagnosed with Long QT Syndrome and a dysfunctional mitral valve. I was taken to surgery for a cardiac electrophysiology study and underwent implantation of a dual cardiac defibrillator and pacemaker within the subsequent 48 hours. When I woke up from surgery and the doctors explained everything that had happen in the last few days I began to laugh. Vindication!!! I knew something was physically wrong with me. For the first time in my life I could breath a sigh of relief. It was the best feeling in the world! That feeling was short lived. Upon my discharge from the hospital I'd earned a daily medication regimen. There didn't seem to be too much known about Long QT Syndrome at the time I was diagnosed. However, a point made to me by several specialists was that the diagnosis was made too late and that my current health status could have been improved had I'd been treated earlier. Needless to say, the diagnoses, surgeries, and the medication regimen were immediately overwhelming for me. Sadly, my husband volunteered, during my hospital stay, for a deployment to Iraq. He said “ This is not what I signed up for, it’s too much for me.” He never called family or friends to let them know what was going on. I was all alone. Finally after a number of unanswered phone calls my grandfather drove down from South Carolina to ‘Give me a stern talking to’. That’s how my family found out about my illness. Since then I have struggled and managed to overcome many physical and emotionally taxing outcomes. I've had to endure an obscene amount of shocks from multiple ICD devices, I've undergone several failed ablative procedures, 'maintenance ' surgeries for my leads, screws and devices, multiple device changes due to malfunctioning issues and several pocket revisions. In 2013 I was diagnosed was PVC induced cardiomyopathy, heart failure. In 2017 I had invasive cardiac surgery to remove faulty and old cardiac leads, pacemaker/ defibrillator, and associated hard wear. At that time my pacemaker/defibrillator was relocated from my pec muscle to my abdomen. Since 2003, I have struggled to achieve an undergraduate degree given multiple periods of interruption due to surgeries and health issues. In 2009 I had to put achieving my degree on the back-burner, perhaps indefinitely. I have worked for several companies and proprietors over the years and in 2013 had to stop given an unreliable physical state and hospital admission into the intensive care unit for heart failure due to poorly controlled cardiac arrhythmias. (PVC induced cardiomyopathy) In 2017 I had invasive cardiac surgery to remove faulty and old cardiac leads, pacemaker/ defibrillator, and associated hard wear. And to further mitigate the risk of pocket infection in both my abdomen and chest. The failures to maintain a job and complete my undergraduate degree are deeply discouraging and have significantly lessened my self-esteem and perceived value. I truly believe had I been taken seriously I would not have the extent of the health concerns I do today. However, through these personal failures, I have achieved. I am happily married now, for nine years, to a man who understands me emotionally and physically, and unconditionally accepts any limitations I may have because of my health condition. Further, I have begun a journey to making my negative experiences into a positive one. I believe that my story comes with lessons, reassurance, prevention, and awareness for women of all ages who do not realize that they too may be affected by heart disease which can declare itself in many forms. My hope is that I bring comfort and solace to other women like myself, regardless of age, race or ethnicity, who may be struggling at any stage of heart disease or illness; they are not alone. If my story can impact one person and result in a better outcome for them, then I have truly achieved. In 2014 I became a Womenheart champion. Being a Womenheart champion and being surrounded by heart sisters who have been through similar experiences has saved my life. I have found my purpose to be to make sure that no young girl ever has to ever suffer through all I’ve had endure. I’m dedicated to teaching young women that it is never too early to be heart conscious, know their “numbers”, to make sure that women with cardiac disease do not feel alone and the be the person I needed when I was younger. If I could say one thing to my younger self I would say “Your courage amazes me, your symptoms are real and it is not in your head.”

Active 6 yrs ago

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