Heart Failure as a Side Effect

Aimee Rodriguez-Zepeda of Woodbridge, Virginia, thought her greatest trial was behind her after she survived uterine cancer at age 33. But six years later, the single mother of four got another diagnosis that put her survival at stake again — heart failure.

A former Marine, Aimee thought her constant exhaustion was simply a byproduct of juggling a stressful job, four busy kids and getting older. But while listening to her heart during a physical in September 2014, her doctor heard something that didn’t sound right and referred her to a cardiologist.

A month later, she was diagnosed with heart failure (HF) and an enlarged heart. Her heart was working at 25 percent of its capacity.

“That day was very emotional for me,” she said. “Just a few years down the road from surviving cancer I find out I have a condition that can’t be cured. With the cancer, I took the meds, I did the chemo and I was cured. Heart failure isn’t like that.”

As with many HF patients, Aimee misunderstood the condition — she thought “heart failure” meant her heart would suddenly stop. But even once she understood it, she still thought her doctor was wrong. “I was like, ‘Check again, you probably made a mistake with somebody else’s chart or something,’” she said.

But it was the right chart, there was no mistake. Her doctors thought there were two contributing factors — chemo therapy and family history. HF and an enlarged heart can be caused by chemotherapy drugs, and Aimee doesn’t remember that being discussed with her. “I think it’s definitely one of the things that needs to be put out there more,” she said. On top of that risk, Aimee has HF genes from her mother’s mother. “My maternal grandmother actually passed away when she 50 years old from what I currently have — heart failure and dilated cardiomyopathy.”

Aimee was only 39 with many responsibilities, which she was very concerned about. “I was a student at the time, and my kids were in sports. I coached my daughter’s volleyball team,” she said. “I was concerned about how much of that I would have to give up.” She was also active in a motorcycle club, “and not those little 300-pound bikes. I’m talking about the 800-pounders, the big ones,” she said.

Aimee with her kids (l to r), Michael, Marianna and Kyla

Like many HF patients, Aimee wanted to be strong and maintain all her commitments and never say the L-word — limitations.

“I would say my limitations became clear within two months of my being diagnosed with heart failure,” she said. At the time, son Michael was playing football, and she was coaching daughter Kyla’s volleyball team. One day after volleyball practice, they went to see Michael’s football game. She remembers setting up her chair, taking a seat: “The next thing I know, one of the other parents is waking me up,” she said. “For me, it was one of those aha moments where I realized, ‘It’s okay to say no to stuff.’ I’m still learning that, not to take on too much.”

She has good days and bad days. As a government contractor who does administrative and logistics support, she has learned to negotiate with her clients that everything can’t be accomplished at breakneck speed. “One of the things I have to do for a military client is inspections,” Aimee said. “I have to keep in mind that when it’s 10 degrees outside, I can’t go out and do an inspection because my body doesn’t regulate temperature as well as it once did. However, to keep the business I have to do the work, so I have learned to advocate for myself — can I do this another day or send another employee?”

Aimee takes care of her mother who lives with her and has dementia and diabetes. “Obviously it complicates things. It certainly means that I can’t afford to have too many down days. I feel that taking care of her gives me what I need to be able to move forward. It’s one of those things where we help each other.”

Aimee has some advice for other parents going through HF: “Tell your kids about the seriousness of what you have,” she said. “One of my mistakes when I was first diagnosed was not talking to my kids about it. They didn’t understand the seriousness of it until I ended up in the hospital. You have to understand that you’re not the only one going through what you’re going through. Your children go through every step with you. If you have young children, they definitely won’t understand. But the older kids need to know, so they can step in if needed. They may act out sometimes, but that is because they don’t know how to express that they’re worried about you.”

She still struggles to find her new normal. She’s changed her diet and tries to get exercise when she has the energy for it, even if it’s only walking around her house. Even having a conversation can leave her out-of-breath.

At 43, she is determined to avoid just sitting around at home and still volunteers as a volleyball coach for youngest daughter Kyla’s team. “I can’t run down the court with her anymore, and may have to take breaks sitting, but I find a way,” she said.

Even so, some days, basic tasks like making dinner prove too difficult. “We’ve been through this so the kids understand they have to step up and help,” she said.

Though still active with her motorcycle club, her trips are more cautious, and she allows plenty of time for rest so that she can recover.

As difficult as it’s been to manage her condition, Aimee has a passion for helping other heart patients, channeling her motorcycle club’s charitable efforts to help families of heart patients and volunteering with her local American Heart Association.

Aimee volunteers her time as an inaugural member of the AHA's Heart Failure Patient Ambassadors and as a member of the Support Network

She’s also joined a team of newly established American Heart Association Heart Failure Patient Ambassadors. The group offers support and information by sharing their personal experiences and information with the millions of Americans impacted by heart disease and stroke. She shares her story at local Heart Walks and Go Red For Women events, and with local and national media. She also offers support to other heart failure patients through AHA’s Support Network.

“I personally know the struggle from a mental, emotional, physical and financial standpoint,” she said. “The importance of knowledge about resources, education, support and care is so important and vital in our road to recovery.”

A better quality of life for HF patients? We've got a tool for that. Because keeping track of the many aspects of heart failure can be daunting, the American Heart Association created an app to help. My HF Path is a self-management tool that helps HF patients better manage and live with the condition. It helps you track your weight, your symptoms and your medications, even sending you reminders. It includes a dozen informative courses on HF and its treatment. And it also connects you to the HF Forum in the Support Netowrk where you can share with other HF patients as well as participate in group chat.

Learn more about My HF Path.

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