Personal Essay: The struggle with cardiovascular disease
Photo courtesy of Narissa Outar
My Guyanese family is no stranger to the horrors of cardiovascular disease. In 2014, my grandmother underwent open heart surgery at the Long Island Jewish Medical Center. My grandmother had received multiple stents implanted into her heart, evidence of modern medical innovations and the dedication of healthcare professionals.
Looking back, I have a profound gratitude for the advancements that have been made in medical science that offer hope and healing in times of crisis. And most importantly, that event reinforced the bonds of family as we rallied around my grandmother, offering our unwavering support and love throughout her recovery.
A year later in 2015, that support was once again in a year marked by heartache and uncertainty as we received news that would impact our lives forever.
At the age of 43, my mother was diagnosed with systolic cardiomyopathy, or heart failure. It began with a cough that stuck with her for months. Concerned, my mother reached out to her doctor, and despite extensive medical investigations, the source of her condition remains inconclusive.
Doctors speculate that it may have started from a viral infection, as the coughing was remnants of the flu my mother had been battling months before. Supporting this theory, a CDC study examining over 80,000 U.S. adults hospitalized with the flu concluded that sudden and severe heart complications were not uncommon, present in about one in eight patients. Even with this evidence, there is still no definite source of the cause.
Through multiple tests, it was revealed that my mother’s heart failure was already at a critical point, evidenced by her reduced ejection fraction percentage plummeting to 15%. To put this into perspective, a normal ejection fraction, which is a measurement of the percentage of blood leaving the heart each time it contracts, ranges from 50 to 70%.
My mother’s selflessness knows no bounds; it is woven into the very fabric of her being. At the time of her diagnosis, I was only 10 years old, and my sister was nine. In the face of her diagnosis and the new challenges it presented, my mother made a remarkable decision to shield her young children from the weight of her condition.
Looking back, my mother’s choice to keep her struggle hidden from us was something only a mother could do, an act of the purest form of love and a testament to her unwavering dedication to our well-being above all else. Only in hindsight do I understand the magnitude of her sacrifice.
I was only told the truth when I confronted my mother about the detailed medical papers folded neatly in her purse during one of her cardiology appointments. For a ten-year-old, the papers didn’t mean much, but the word cardiology rang a bell from my grandmother’s experience the previous year, and I knew something was not right. It was then, standing in those cold, sterile hospital corridors, that my mother finally told me about her diagnosis, tears streaming down her face the entire time. Over the next three years, the cardiology department at the North Shore University Hospital became a familiar place, a backdrop to the intricacies of her condition and the countless appointments that followed.
My mother became sort of a medical mystery. Firstly, she had none of the symptoms commonly associated with such progressed heart failure (such as shortness of breath, swelling or fatigue) besides the cough that started it all, and even that eventually went away with prescribed heart failure medication. As I accompanied my mother to more appointments, I witnessed the perplexity that her condition posed to the medical professionals entrusted with her care.
Doctors marveled at one of their biggest questions: how did she have children despite her progressed heart condition? It was a puzzle yet to be solved. As my sister and I tagged along on her appointments, I met her team, including the head of cardiology. Their expertise and kindness offered a glimmer of hope amidst the uncertainty. In their presence, I found reassurance and comfort, knowing that she was in the best hands as we embarked on this journey together.
The turning point arrived after months of grappling with the limitations of various medications when my mother’s dedicated medical team delivered a stark ultimatum: without a pacemaker, her life expectancy fell to five years. Doctors informed her that her heart was in the same condition as an 80-year-old, someone almost twice her age.
Normally, a patient would accept that without question, but not my mother. With her usual stubbornness, born from years of overcoming obstacles, she met their prognosis with defiance, declining the pacemaker despite the dire consequences. And with that, she made the bold decision to relocate our family to Florida.
Time proved to be both an adversary and an ally. Over the next five years, she endured prolonged periods without seeing her cardiac specialist and without having the essential medications she needed, primarily due to high monthly costs that my family could not afford. It reached a point where purchasing a one-month supply of Entresto, the drug she needed the most, was considered a luxury for my mother.
I felt beyond helpless. There was no one else I needed in this world more than my mother. During these years, I stood by as more members of my family on both my mother’s and father’s side received their diagnoses of cardiovascular disease.
Eight years passed and it became increasingly apparent that my mother’s health was declining in the weeks leading up to my arrival at Hofstra University.
We received the news that she would be undergoing a defibrillator implantation by the year’s end, and this time, there was no denying it. Despite beating the odds of survival, her heart was not able to go back to normal strength.
At a time when moving away to college was supposed to be a simple, bittersweet moment in a teenager’s life, it became the most bitter and regretful thing I had ever chosen to do. How could I leave my family in their time of need? My mom put her own worries and fears aside and made sure I packed up my car and drove back up the East Coast to attend Hofstra.
Once again, her decision encapsulated her unwavering commitment to prioritizing others’ well-being above her own. She never wanted me to miss out on opportunities that would ensure me a better future than the life she’d had.
The prevailing narrative surrounding heart failure is that treatment will transform your life and alleviate all burdens. It’s a comforting notion that undergoing medical procedures to address the condition will somehow miraculously lift the weight off your shoulders. However, it’s just that – a notion.
In Dec. 2023, my mother decided to embrace her fate, opting to undergo the implantation of a Medtronic AICD (automatic implantable cardioverter defibrillator) or, as she jokingly calls it, her “robot.” It has been almost two months since her procedure, and I watch as she navigates even the normalities of life more cautiously, unable to do some of the things she once could like brushing her own hair.
My mother’s condition causes me to be constantly concerned that she might overexert herself and put undue strain on her new pacemaker. Sometimes, I let myself ponder the consequences, envisioning a life without her, but I swiftly pull back from those thoughts, chastising myself for delving into such dire scenarios. These emotions stem from years of witnessing her navigate this condition, yet I am only an outsider looking into her condition.
Amidst the tumult of navigating my mother’s journey through heart failure, a silver lining emerged earlier in 2023, a guiding light illuminating my path.
During my senior year in high school, as I started on the dreadful task of applying to colleges, my childhood dream of becoming a doctor remained the same. As I looked deeper into college options along the East Coast, Hofstra University emerged as a possibility, with its admirable medical school that partnered with Northwell Health, which many of the hospitals my family received care from were affiliates of.
As I continue my undergraduate journey, the memories of the compassionate individuals who aided my grandmother’s and mother’s journey through cardiovascular disease remain etched in my mind. Their dedication served as an inspiration, fueling my determination to follow in their footsteps.
In honoring the attacks of this disease within my Guyanese family, I am committed to following a path that not only fulfills my childhood dream, but also serves a greater purpose: to heal, to educate and to uplift those in need, especially in my West Indian community – a population disproportionately affected by cardiovascular disease, yet often overlooked in public health discourse.
As a cardiologist, my goal would not be to change the world. Instead, just like that team of doctors who helped my mom, it is to make a meaningful difference in the lives of as many individuals as possible, doing whatever I can and, most importantly, doing my best to serve my West Indian community by advocating and addressing their unique healthcare needs with compassion and dedication.
