"I'm One of the More than Half a Million People Who Can Go Years Undiagnosed": A Woman Shares the Story of Her Shocking AFib Diagnosis
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alarie Tucker, a 58-year-old procurement manager in Grandview, Missouri, had noticed her heart periodically racing on and off for years. But she shrugged off her symptoms as just nerves and anxiety.
That is, until one day in 2018 when she ended up in the emergency room—and with a shocking diagnosis of atrial fibrillation (AFib).
Up to six million Americans struggle with AFib, a type of irregular heart rhythm that occurs when the heart’s upper and lower chambers don’t beat in sync. As a result, blood clots can develop in the heart and travel to the brain, raising the risk of stroke five-fold, according to the American Heart Association.
Even more concerning? Many people with atrial fibrillation don’t show symptoms, so they may go undiagnosed for years.
This is why Johnson & Johnson has partnered with Apple on the first-of-its-kind Heartline Study, a nationwide research initiative that aims to determine whether an app-based heart health engagement program, used in combination with Apple Watch’s irregular rhythm notification and electrocardiogram (ECG) app, could potentially help lead to the earlier detection and diagnosis of AFib.
This month, Tucker appeared on the CBS show The Talk, along with C. Michael Gibson, M.D., a cardiologist and consultant with Johnson & Johnson who is co-leading the Heartline Study, to help raise awareness about the very serious condition.
"I’m so glad that the Heartline initiative launched this year," Tucker says. "If I’d been part of it, it could have helped change a very scary part of my life."
She shares her personal story of what it's like to be one of the more than half a million people who go undiagnosed with AFib each year.
Valarie Tucker: July 26, 2018 started out like any other regular day. I woke up, went to speak at a diversity event and came home feeling just fine.
But after taking just five steps up my stairs, it was clear something was off. I felt exhausted, and suddenly, my heart began racing. It literally felt like it was pumping outside of my chest. I figured I was just tired, or maybe coming down with something, so I lay down for a couple of hours.
However, when my heart started to skip beats, I began to panic. I knew I needed to get medical attention immediately, but I didn’t think it warranted an ambulance. I got in my car and drove myself to the nearest emergency room.
A Devastating Diagnosis—and an Unexpected Setback
Once I got to the hospital everything was a bit of a blur as doctors and nurses quickly ran a battery of tests, including an electrocardiogram (ECG), where small sensors called electrodes were attached to my chest and arms to sense and record electrical signals as they traveled through my heart.
Shortly afterward, a physician came in and said very matter-of-factly: “You have atrial fibrillation.” He explained that my ECG had shown that my heart rate was fluctuating erratically, which is a classic sign.
I just looked at him and said, “What?” I’d never heard of AFib before. I had no clue.
I listened to him in disbelief as he explained that I now had a heart condition that raised my risk of having a stroke, developing heart failure or other heart-related complications. I rotated between feelings of numbness and terror. What did this mean for my life? How would it change what I did? Would I have to give up things I loved, like travel? I was too scared to even dare ask him these questions.
My own father had died of a stroke at age 47. I began to wonder if he may also have had underlying AFib that he just hadn’t known about.ShareDid you like reading this story? Click the heart to show your love.
I spent the next three days—including my birthday—in the hospital. To treat my AFib, my doctors explained that they had to reset my heart rate and rhythm back to normal through drugs administered first through an IV, then by mouth. I was discharged with a clean bill of health, and instructions to keep taking my medications.
The whole experience was a real wake-up call for me. I was already managing diabetes and high blood pressure, and I had a family history of heart disease. My own father had died of a stroke at age 47. I began to wonder if he may also have had underlying AFib that he just hadn’t known about.
But now I knew about mine, and I was determined not to end up following the same path. I vowed to be religious about taking my medications, as well as following a low-sodium, heart-healthy diet. And as soon as I was cleared for it, begin regular exercise again.
Two weeks after being discharged from the hospital, I was on a plane to Cabo, Mexico, with some of my best girlfriends. I figured it was OK to travel abroad as I was planning to do nothing more strenuous than hang out at the pool and the hotel spa. My physicians were OK with it, because my condition seemed to be under control. But we'd all underestimated my atrial fibrillation.
After a couple of days, I had a repeat episode. My heart started racing and felt like it was going to jump out of my chest. You can’t even imagine how scary it is to be ill in a foreign country. Luckily, the hotel had a nurse practitioner on staff who advised me to get on the next plane back home. I immediately flew back and went straight to my cardiologist, who adjusted my treatment plan.
Since then, thankfully, I’ve been fine. But my family watches me like a hawk. My sister, in particular, has been my "Rock of Gibraltar." While my AFib is generally well controlled, I still have an occasional episode a couple of times a year if I do something like drink too much caffeine or skimp on sleep. As soon as I call her to let her know, she’s at my side.
My New Normal With AFib
Almost two years after I landed in the emergency room, my life is pretty much back to normal. Thanks to the medications I take, I’m able to work full time and do things I love, like home improvement projects.
I try to live a very holistic, healthy lifestyle: I follow a low-sodium diet that’s rich in vegetables, whole grains, low fat dairy and healthy fats, like avocado and olive oil. I use a food tracker, which I’ve found very helpful when it comes to measuring my sodium intake—which is crucial to keep my hypertension under control—as well as my carbohydrates for my type 2 diabetes. I do limit caffeine and alcohol, both of which can aggravate AFib. But I also allow myself to indulge occasionally in my big weakness: cupcakes.
My advice to others who are newly diagnosed? It may seem overwhelming and frightening in the beginning, but you can manage it. Get a good support group, and do as much research about the condition as you can.ShareDid you like reading this story? Click the heart to show your love.
There have been parts of my life that changed, however. I was a competitive athlete in high school and college—I ran track and played softball. But now, I avoid very strenuous exercise because I worry that it will trigger an episode of AFib. My main mode of activity now is walking. I track my steps, taking anywhere from about 5,000 to 7,000 each day. My goal is to get to 10,000.
I've also had to adjust my travel schedule. Before my atrial fibrillation diagnosis, I was a frequent flyer. I loved to travel everywhere and explore new cities and countries. My physicians still let me jet off, but ask that I only fly four hours at a time, and I have to wear compression socks, which help reduce my risk of developing blood clots.
The other healthy tweak I’ve made to my life is practicing mindfulness. Every morning, before I get in the car to go to work, I spend 15 minutes meditating and in prayer. My cardiologists say that emotions are closely linked to heart function, so these types of relaxation methods seem to have a calming effect on my AFib. I also changed the radio station during my commute to one with nothing but positive songs and commentary, and good vibes. This way, if I've had a rough day, on my way home I have a full 20 minutes with nothing to do but listen. It really helps center me again.
In many ways, my diagnosis of AFib has been positive. It’s forced me to make healthy lifestyle changes that have benefited not only my heart condition, but also helped me get my high blood pressure and type 2 diabetes under control.
My advice to others who are newly diagnosed? It may seem overwhelming and frightening in the beginning, but you can manage it. Get a good support group, and do as much research about the condition as you can. Take the proactive steps you need to get your health under control.
View AFib as just another part of your everyday existence, and don’t let it define you. That’s what I’ve done, and it’s allowed me to go out and live life to the fullest.
Meet Tucker—who joined Janssen’s SHARE Network to help educate and inspire others with her condition—and learn more about Johnson & Johnson's work with earlier detection of AFib in this video: