Advice from Heart Disease Survivors
Stories by Carrie Vittitoe | Photos by Kylene White | Styling by Christine Fellingham
Sponsored by U of L Health
In movies, it is easy to see the Red Alert moment: sirens blare loudly, and red lights flash on and off. The ominous background music clues the viewer in that a dangerous attack is imminent to the characters on the screen.
Heart disease isn’t like a film, though; it presents differently in women. For some women, their cardiac event was preceded by a slow decline that happened over years; other women experienced acute symptoms that brought them to their knees (literally) and made them call 911. It’s essential for all women to recognize some of the cardiac Red Alerts that might help them know when they need to seek medical care.
Not everyone feels the same level of fear at the scary parts of a film. What terrifies one person and makes them hide behind their eyes may only elicit a mild response from someone else. Amanda, 40, had high blood pressure, but she admits, “While I knew that was a serious thing, I wasn’t actively doing a lot other than taking medication. I’m admittedly not the best patient because I would not routinely check it.” As a single mother to two children at the time and a busy attorney in Elizabethtown, Kentucky, she had other priorities with which to contend.
In 2021, when she experienced the classic symptoms of a heart issue, including left arm pain and chest pressure radiating to her back, she didn’t immediately rush to the hospital, but called her cousin, who is a nurse, first. At her cousin’s urging, Amanda went to the hospital, but every test the hospital ran came back normal. Despite this, her cousin stayed on Amanda to visit a cardiologist, even though Amanda was like, “Ok, this was a fluke; move on with life.”
When Amanda visited the cardiologist for a follow-up, she apologized for wasting their time since she was sure it was nothing. “They ran a number of tests and found that I did have an indication of heart failure,” she says. “I was a little in shock; this is not what I was expecting.” Amanda isn’t an easily scared woman, so her Red Alert moment was subdued, but it definitely gave her pause.
Since her diagnosis, she’s been much more intentional about her heart health. She takes her medication and is now treating her blood pressure with great urgency. “I did the minimum trying to make it better. Once it showed some heart failure, it’s a wake-up call,” she says. “This is a big deal that if not corrected could become a lot more serious.”
Ufelia “Fee” Lee
Fee, 18, was born with dilated cardiomyopathy. While she was able to have a pretty normal childhood, eventually her heart began to weaken as it grew increasingly large. “I began being very tired and struggling with daily activities,” she says. “[My heart] was no longer functioning properly.” She had been involved in theater and modeling, but began noticing that she could no longer keep up with routines.
Unfortunately, she began having to go into the hospital with increasing frequency. Her cardiologist began to have conversations with Fee that she was being put on the transplant list for a new heart. “Basically, I didn’t think it would ever come to this,” Fee says. “[Doctors] give you as much information as they can on it, but it’s not something you can really prepare for.” In March 2021, during another hospital stay, Fee learned that she was being bumped up on the list. Because Fee’s symptoms had been gradual up to this point, this felt like a Red Alert moment; the intense sirens were going off in her ears. “This is going to be one of the hardest, if not the hardest, thing I’ll ever have to do in my life,” she says.
Fee was in Norton Children’s Hospital from May to August, and it was on August 27, 2021, that she got her new heart. Following her release from the hospital, she spent several weeks at Frazier Rehab going through physical therapy to help her get used to her new heart and learning how to navigate life after such a grueling surgery. “You feel like dead weight. I remember walking for the first time. It felt like I’d never had legs in my entire life,” she says. “It’s like starting all over.”
With her surgery behind her, she was excited to begin college at Bellarmine University in January 2022 and pursue a communications degree. And she’s reveling in time spent with friends and family, which was difficult to do when hospitalized during a pandemic.
Amy, 47, a clinical pharmacy manager for Norton Healthcare, was 45 years old and had no risk factors for heart disease. In fact, she had been doing high intensity workouts four or five days a week. When she woke on January 24, 2020, with discomfort across her chest, her initial thought was that she had pulled a muscle the night before while exercising. However, weird sensations, including pain radiating in her jaw and the back of her neck, increased. Still, she continued to get ready for an early morning meeting. When she put on her Apple watch, she noted that her pulse was 99, which was high for her. If she had been in a movie, the brooding, oppressive music would have been getting increasingly loud at this point: her Red Alert was happening.
She called a friend who encouraged her to get to the emergency room. When Amy arrived and was assessed, it didn’t take too long before nurses swarmed her with medication and IV bags, and she was given the news that she was having a SCAD. “SCADs most frequently happen in healthy women, [and] it’s thought to account for one to four percent of all heart attacks,” Amy says. She underwent a heart catheterization and doctors placed a stent, but she has no coronary artery disease – no plaque and no atherosclerosis.
Since her heart attack, Amy has had some arrhythmia issues but experiences no angina for which she is grateful. While she continues to see a cardiologist in Louisville, she has also become a patient at Vanderbilt, which has a special program to study women who have experienced SCAD. “I have taken part in the SCAD registry; I wanted to be part of whatever I can do for research,” she says.
Like many people who have experienced a heart attack, Amy struggles with anxiety and wants to encourage other women to not only listen to their bodies’ unique physical symptoms and advocate for medical tests to rule out issues, but to also seek care for their mental health symptoms. Depression and anxiety are very common for individuals who have experienced cardiac events, and part of healing as a full person involves taking care of your emotions and psychological health in addition to your heart. “Anytime you have a life-changing event, there is a mental component to it. You can’t ignore it; it’s a huge part of healing,” Amy says.
Francine, 43, was just 29 years old when her Red Alert moment happened. She was a week or so past delivering twins, her fourth and fifth children, when she began to feel ill and so weak that she couldn’t even open a bottle of ibuprofen. She went to lie down on the bed but collapsed on the floor. She struggled to breathe and felt pins and needles in her arm. Her husband, Eric, called an ambulance. “I had no idea what was going on,” she says.
EMS arrived quickly because at the time her family lived on campus at the University of North Carolina, right by the hospital. “Once they got there, I stabilized. They put me on oxygen, and they had me do breathing exercises. I was able to sit up a little bit,” she says. Francine and Eric were worried about the expense of going to the emergency room, but one of the EMS workers instructed them to go and get Francine checked out.
“Within a few hours, bloodwork came back showing I’d had a heart attack. My type of attack is called a spontaneous coronary artery dissection (SCAD) of the left anterior descending artery,” she says. This cardiac event is rare because it is usually diagnosed in autopsy (about 70% of people who experience this don’t survive). Francine says her understanding is that it is more common in women who have just delivered babies or women who have underlying connective tissue disorders.
Fortunately, despite her scary Red Alert, Francine’s heart healed on its own with only medication and time (placing a stent was too risky), although it did take several years, and she had restrictions that were often a challenge while raising young children. Once she was able to exercise, her family began jogging and doing races together. “I really feel like if I didn’t have this experience, I don’t know if I’d love my life as much right now. It makes me super grateful and more motivated to live healthy,” she says.
Patricia, 78, was diagnosed with congestive heart failure several years ago after a routine physical. “I went to my family doctor, and she kept listening to my heart and looking at me. She said, ‘Do you get dizzy a lot?” Patricia replied no but was sent for a heart catheterization where she was informed of her diagnosis.
While dizziness wasn’t a symptom for her, Patricia had dealt with shortness of breath. “If I walked a little piece, I was huffing and puffing, but I didn’t think it was the heart. I used to smoke, and I have COPD,” she says. And like a lot of older people, she assumed shortness of breath was perhaps a normal part of aging. “Everything changes with your age, so I said this is probably something that has happened since I’m older,” she says.
Because she didn’t suspect she had a heart condition, Patricia’s Red Alert felt like a jump scare in a movie — a sudden, shocking flash of fear. When she got the news, she thought her days were numbered and her time wasn’t long in this world. “When they first told me, I was really scared, and I was afraid to do anything to overexert my heart,” she says.
Her cardiologist, Dr. Chandhiran Rangaswamy at U of L Health, put her on medications and had her
begin using the CardioMEMS System, a monitoring tool that requires placing a sensor near the patient’s heart to measure blood flow and heart rate. Each morning, Patricia lies on the receiving unit, and her data is sent wirelessly to Dr. Rangaswamy’s office.
It allows him to adjust her medications according to how her heart is doing and keep a watch on her heart function.
Despite her initial concerns, Patricia is able to live a full life with her heart disease, which includes being part of an RV Club with her husband, Joe. Last year, they traveled to Gillette, Wyoming, and this year they have plans to visit Branson, Missouri, and Shawnee, Oklahoma. “I don’t worry about it now because Dr. Rangaswamy keeps such a close eye on me that I feel very comfortable. I don’t feel afraid because I know if there is something they can fix, they will,” she says.
In 2012, Jennifer, 54, visited her doctor for a tension headache, which wasn’t unusual for her. She was a single mom working in a stressful job that she hated. When the doctor listened to her heart, he didn’t like what he heard so he scheduled an appointment for her to see a cardiologist. Jennifer wasn’t concerned and merely wanted some medication for her head.
When she went to see the cardiologist, he told her, “You’ve been sitting here not doing any exercise, and your heart rate is like you’ve just run a marathon; that’s not normal.” They ran more tests that day. Finally, the doctor came in who gave her the results: “He said, ‘You have non-compaction cardiomyopathy. It’s very rare. In my profession, I have probably only seen one other case,’” she says. He told her she needed to quit her job, have a pacemaker put in, and go on the transplant list. Jennifer replied, “Are you in the right room?” This Red Alert moment was so mind-blowing she couldn’t even process it.
Jennifer sought the advice of other cardiologists. She spent years taking various medications, visiting cardiologists, and seeing her quality of life worsen to the point that she had to take disability in 2014. “My condition didn’t fit all the boxes because it is so rare,” she says. The woman who had once been able to do 10 things in a day got to the point where going to the grocery store left her out of breath and unable to do anything else for the rest of the day.
In April 2021, her metabolic stress test numbers were what they needed to be to get her on the
transplant list. She was put on the heart transplant list on May 6, 2021 and had surgery on May 19, 2021.
A heart transplant is no joke. Jennifer has to take immunosuppressive medication and have heart biopsies done to ensure her body isn’t rejecting the heart. Like other transplant patients, she has restrictions that limit what she can eat and do. “I raised my daughter by myself, and that was hard; this is the hardest thing I have ever done,” she says. She is fighting tooth and nail to get back to something resembling normal and feels supremely grateful for the gift of someone else’s heart.