American Heart Association
Behind the Scenes, Part IZuleyma Santos, Survivor
Tell us your connection to the cause…
After the birth of my daughter in August 2019, I was diagnosed with peripartum cardiomyopathy, an enlargement of the heart—it happened to me due to pregnancy. I only took care of myself for the first few months, then went back to work, raising two babies and taking care of my family. I did not know that, by not taking better care of myself, I'd end up in the hospital a year later, October 2020, with stage 4 heart failure.
I was in the hospital for the next three months and had multiple surgeries, including one for an Impella heart pump to help my heart function. After undergoing treatments to lower my antibody count to get my body ready for a heart transplant, with no success, I was advised to have another surgery to implant another device, an LVAD (Left Ventricular Assist Device). On December 29, 2020, I was finally able to come home to my late husband and two kids.
Since then, I've been able to recover and started doing antibody treatments to get my body ready for a new heart. Now, at age 37, I want to learn ways to better my health and life. Having gone through my experience, I also want to reach out to women my age who may not know that heart disease can happen to anyone, at any time.
“The advice I want all women to know is this: Let’s take care of our bodies. We need to come together and advocate for ourselves.”
The organization has made a big impact on my life. Through the American Heart Association, I have learned to take care of myself. I have learned that I am not alone with this heart disease and if we come together, understand it and support the organization, we can make a difference in another person’s heart journey.
What advice can you share?
Heart disease is the #1 killer of women all over the world and the advice I want all women to know is this: Let’s take care of our bodies. We need to come together and advocate for ourselves. Let’s make sure that we take the time and ask our physicians what we can do to better our health. Let’s support the American Heart Association and learn how it can help us better our health, too. Now I eat well and do light exercises to keep my body and heart moving and pumping, to be able to get ready for a new heart. I also encourage everyone to live life and not let heart disease get the best of us. Let’s live in the moment and enjoy life to the fullest.
Jennifer Beals, Actor & Advocate
Tell us your connection to the cause, the Heartlanta Bra...
The echocardiogram stress test was designed by men, for men. According to the Bruce protocol, the test is traditionally performed without a bra because a traditional bra interferes with the electrodes. Running as fast as you can for as long as you can, topless, is emotionally and physically uncomfortable for the majority of women. This life-changing cardiac diagnostic test wasn’t designed for breasts. So my partner Dr. Sherry Ross and I designed a bra made especially for the echo stress test.
What was the inspiration, the a-ha moment, behind it?
My doctor, Dr. Sherry Ross, asked me to go get a heart check-up. My father died of a stroke and she wanted some information. She wanted me to get a stress echocardiogram. "Okay," I said, "What's involved with the test?" She may have said something else, but all I heard was, “You run on a treadmill as fast as you can for as long as you can and they monitor your heart.” Perfect! I thought. I'm a runner; I am going to CRUSH this test.
I don't know how many of you have taken this test, but I get there decked out in my most technical running gear and they ask me to disrobe from the waist up. They put electrodes attached to long cords all over my chest—nine in total. The med tech, a woman, had me first lay down on a table where she used a gelled-up transducer to get ultrasound images of my heart at rest and then she says, "I need you to get on the treadmill."
“Wait, what? You want me to run as fast as I can for as long as I can hooked up to a bunch of electrodes without a bra?”
"No," she says. "You can't do that—it interferes with the electrodes." I stood there stunned and a little confused. Wait, what? You want me to run as fast as I can for as long as I can hooked up to a bunch of electrodes without a bra?
Yes, she says.
I look at her for a second. "You realize that's illegal in like six states?"
"That's the way it is," she says.
Well, now I'm already stressed. I get on the treadmill and flapjack my way through the test, which I am happy to say I passed with flying colors and, yes, this is where the healthy dose of rage comes in.
As I'm walking out of the office I'm already reaching for my phone. I called Dr. Ross on my way back to the car and told her about my experience with the test. I thought of all the women who had gone through that test, and had felt uncomfortable or humiliated—especially if their med tech had been a man—and who maybe didn't do their best because they felt that way. I told Dr. Ross I want to design a bra that's compatible with this test so no woman has to go through what I just went through. So that’s what we did.
What has the response been like?
Every cardiologist who has shared Heartlanta with their patients has told us how grateful their patients were. Heartlanta doesn’t interfere with the medical technician’s work and it allows women to feel more physically and mentally comfortable in what is a stressful situation. Win/win.
Jaime Zeluck Hindlin, Survivor
Tell us your connection to the cause…
When I was 32 and gave birth to my daughter Kate, I experienced a rare form of heart disease called peripartum cardiomyopathy, which is pregnancy-induced heart failure. It is such an unknown disease, and something that is so important to raise awareness of. I wanted to dedicate most of my time to spreading the word about this disease so that it can be prevented or caught early in a lot of women.
Could you tell us more about how it impacted you?
Peripartum cardiomyopathy made the experience of childbirth extremely traumatizing and left me with scars, not physically, but emotionally, which I am still working on healing from. It also changed my life in that I am never able to carry a child again. That, for me, is the biggest heartbreak. But I am just grateful I’m OK. The recovery was eight months while also having to raise a newborn. I was lucky enough to have enough help because I was not strong enough to take care of a baby myself. I was in cardio rehab three times a week.
“I experienced a rare form of heart disease called peripartum cardiomyopathy, which is pregnancy-induced heart failure.”
To always listen to your body, no matter what any doctor says. Trust your gut wholeheartedly.
Dr. Nicole Weinberg, Cardiologist
Tell us your connection to the cause…
As a cardiologist, I spend most of my life caring for people with heart disease. Not only is it the most innovative and dynamic field of medicine, but I also feel like I can truly make a difference in their trajectory of disease. I have found that it is not good enough to be able to treat the patient with medications and procedures, but I have to be an educator as well. It is so gratifying to get reach a patient, educate them and then watch them change the course of their disease.
And what about to the American Heart Association?
Using the American Heart Association gives us a larger platform to reach people. Since heart disease is the leading cause of death, it is critical to reach as many people as possible. The organization has a worldwide reach and staff that can execute a plan. Strategy and planning is what it takes to combat this disease and the American Heart Association has the tools to make this happen.
Stereotypes about women's heart health you'd like to correct?
For better or for worse, I worry about people who say to me that they eat healthy and exercise and can combat their family history with that alone. Family history is so important in defining an individual's disease. The benefit of having had someone in your family suffer through a disease state gives you the power to understand the patterns of disease within your body. If someone looks healthy on the outside, that doesn't mean that their insides are as healthy.
“I worry about people who say to me that they eat healthy and exercise and can combat their family history with that alone.”
