From Prevention
In the spring of 2016, I was 41 years old and training for my seventh marathon. At one point during a run, I suddenly felt as if I was only breathing from the top of my chest. It was as if there was a lump in my throat preventing me from taking deep breaths. I went from running 25 miles a week—five miles, five days a week—to struggling just to get through the first mile.
I noticed this happen several times, until it became routine for me to need to stop and start a lot during every first mile of my runs. During the rest of the miles during my runs, I’d stick to a consistent but slower pace unless I really pushed myself—and I often did. When I felt like I was running too slowly or fighting to breathe through that lump in my throat, I would try to sprint through it.
I remember sitting down at a few bus stops and on more than many curbs pouting and tearing up. I was frustrated and probably a little angry, too. I’m a determined person (or a stubborn one, depending on who you ask), and this challenge made me even more so.
But I kept thinking that I needed to train harder, so I increased the diversity, duration, and intensity of my workouts. I cross-trained with Bikram yoga, bought a bike, added a Vitamin B12 supplement to my regimen, and went to bed earlier. No doubt, I got dangerously comfortable with discomfort.
In June 2016, I was struck with unrelenting fatigue.
It seemed like I was always foggy and could never get enough rest, no matter how early I went to bed or how late I allowed myself to sleep in.
Looking back, I now realize that the fatigue hit earlier than I acknowledged it. At first, I associated it with my professional responsibilities and lifestyle. I was busy—I had recently accepted a promotion to become the chairperson of my department at the university where I worked as a creative writing professor. I’d also recently launched a visual art exhibit and was working on promoting that, traveling, and presenting my written scholarship at research conferences. Additionally, I was teaching a weekly fitness class and studying for certification to become a group fitness instructor.
Once, while talking to one of my sisters on my cell phone after work, I revealed to her that I was still in my car, parked outside of my house, because I didn’t have the energy to cross the street and go inside. We laughed about it at the time, attributing my exhaustion to a “long day.”
But then I started to actually crash at night. I didn’t just fall asleep. I regularly woke up face down on the couch fully clothed, surrounded by work papers.
By the time my annual wellness visit rolled around that July, I knew that I needed to talk to a physician about my symptoms.
Given that I always had some fatigue, the primary care doctor I saw told me to stop doing so much, take it easy, go to bed, and up my calorie intake. But I explained that this fatigue was different. I was sleepy even when I’d had a full night’s rest and I was still having trouble achieving my typical running pace, despite all of the changes I’d made to my training.
Because my shortness of breath only occurred when I pushed myself, the doctor thought I might have exercise-induced asthma. An in-office breathing test didn’t reveal any deficiencies in my lungs, but she wasn’t convinced that she could rule out a diagnosis yet, so she sent me to another office to get a full pulmonology exam in August 2016. When the exam didn’t reveal I had asthma, I was sent to yet another clinic for a chest x-ray in early September.
On September 13, 2016, the pulmonologist called me in to share my results with me. He explained that my lungs looked great and he was prepared to treat me for a possible case of exercise-induced asthma. However, he said that he noticed my heart was enlarged on the x-ray and he wanted me to have an echocardiogram (a test that produces images of your heart) at a cardiology clinic within 24 hours to check it out.
That afternoon, I learned that I did not have exercise-induced asthma after all. I was diagnosed with heart failure.
As the doctor explained, I had dilated cardiomyopathy, a form of heart disease where my heart’s main pumping chamber, the left ventricle, stretches and thins (or “dilates”). As a result, my heart can’t pump blood as efficiently, and sometimes I have irregular heartbeats called arrhythmias.
My initial response was, “So, how will we fix it?” I believed that I was a healthy person, so I thought I could “health” my way out of heart failure. I would find the right supplement, taper my exercise for a while, take the meds the cardiologist prescribed, and get better. I was in denial.
Within an hour, that changed. As the cardiologist went over the aspects of my disease and I began to settle into the news, I became scared and nervous. I had only associated the term heart failure with death—definitely not a condition with which someone lived.
While the diagnosing cardiologist was thorough in explaining my condition, he did not prepare me for a life with heart failure. At the time, his focus was on getting me out of the crisis I was in. He provided me with a prescription and told me that he wanted me to “slow down on the running,” to which I asked, “How much I should reduce my mileage—five miles a day? Three?” He looked at me incredulously and said I should not run at all.
Still, I thought easing up on running would be temporary, something I would do until I got better—whatever that meant. When I pressed the doctor for a specific prognosis, he refused to tell me, saying that every case was unique.
I called my parents to share my diagnosis and learned my grandmother and I had the same condition: dilated cardiomyopathy.
Growing up, I had always known my grandmother had some sort of heart problems. She was otherwise healthy and only 59 years old when she passed away. At the time, I was in the second grade. Until I was diagnosed with heart failure, I never thought of her condition as anything more than the thing that took her away from us.
While doctors do not believe my condition to be hereditary—particularly because my heart failure is symptomatic of an autoimmune disease and not related to a heart attack—it was heavy to learn that the same condition that she endured was a new reality for my own day-to-day life.
Women of color are disproportionately affected by heart disease and heart failure. And so much is required of Black women.
We are caregivers to other people, workers who are required to do more than our peers to achieve professional success, and patients who are under-resourced and under-believed when they do identify health concerns through the health care system. All of these stressors put us at an increased risk of developing a condition like heart failure.
Shortly after my diagnosis, I was looking for a support group and found WomenHeart, a patient-centered organization dedicated to serving women with heart disease to improve our quality of life and advocate for our benefit. Through a program called SisterMatch, I was connected with another woman living with heart failure who had a similar fitness background and could relate to my loss of identity.
After this experience, I decided I wanted to try my hand at being that person for someone else. Today, I serve as an advocate for WomenHeart and am trained to be a community educator. I also look for opportunities to spread awareness among the African American community to talk about heart health and its link to family history.
Over the past few years, I’ve worked to manage my condition and not let it define me.
On June 30, 2017, about nine months after my initial diagnosis, I got a pacemaker implant that includes an implantable cardioverter defibrillator (ICD). The pacemaker regulates my heart rate about 1% of the time, and the ICD will provide an electrical shock should the irregular rhythm last too long and threaten cardiac arrest.
Today, I try to focus not on what I can’t do, but to celebrate what I can. While I haven’t been able to resume distance running to the same extent as before my diagnosis, I still run regularly at a reduced pace and mileage to strengthen the healthy parts of my heart. Staying active also gives me a sense of control in a situation that can feel so chaotic, which is one way that I deal with the trauma that comes with a diagnosis like mine. So far, I’ve worked up to running a 10K.
One day, I’d like to return to marathon running again. I miss it a lot. But for now, I am happy to be able to go on with my daily life and stay healthy and active in other ways. I continue to work as a professor, enjoy various hobbies such as art and yoga, and eat a heart-healthy vegan diet. The mental part of moving forward is still a work in progress, but I practice meditation and try to make sleep more of a priority, too.
In light of the unique stressors Black women face in this society, my advice is to be a caregiver for yourself and advocate for yourself in your professional and personal lives. For women diagnosed with heart failure, my advice is the same: Take good care of yourself and always advocate for yourself. After all, as Toni Morrison wrote in Beloved, “You are your best thing.”
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