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Not until Amy and Bob Bies had been married a few years did he understand why his wife was determined to live in the moment, to say yes to adventures like zip-lining, to go all out for holidays and birthdays.

He knew she’d had a heart attack at 36 and another at 41. But he didn’t realize that after the second, doctors warned that Amy might only live another 10 years – if she was lucky.

“I didn’t know she was carrying that time clock in her head,” Bob said.

Suddenly, it made sense to him why she often said, “Tomorrow is not guaranteed.”

Amy and Bob recently marked the 12th anniversary of her second heart attack with flowers and a special dinner. She has a renewed peace of mind because doctors now have a better grasp on her condition, which was only recently defined. It’s called cardiovascular-kidney-metabolic (CKM) syndrome, and an estimated 90% of adults in the U.S. likely meet the criteria for it.

“I feel I’ve been given another chance to do what I want to pursue instead of just surviving the day,” Amy said.

Her heart-health journey began in 2007, when she was living in Colorado. She and Mackenzie, her then-teenage daughter, were driving home when their car slipped on a patch of ice and rolled over three times. While their seat belts helped saved their lives, Amy had a freakish heart attack – likely from having so much pressure on her chest that an artery tore.

Thankfully, she didn’t need surgery. Doctors advised her to resume her life, but with caveats: She had to be diligent about taking medications for her heart, high cholesterol and prediabetes; and, because she was overweight, to eat healthier and to exercise.

She admits to not taking their warnings as seriously as she should have.

In 2010, during a routine checkup, Amy was diagnosed with diabetes and put on additional medication.

Then, while visiting her brother in Oregon in 2013, she experienced what she thought was heartburn. At the emergency room, doctors determined she was having a heart attack. More specifically, she had a blockage in her left anterior descending coronary artery, which supplies a large portion of the blood to the left side of the heart. Doctors inserted three stents to restore normal blood flow.

Amy went back to work as a teacher and tried to follow doctors’ instructions, particularly walking more. But any time she felt the slightest bit uncomfortable – if her heart fluttered or began beating quickly – she stopped, fearful she was having another heart attack.

Later that year, she couldn’t catch her breath while walking upstairs. The cardiologist told her she had congestive heart failure. This meant her heart muscle wasn’t squeezing hard enough to deliver oxygen-rich blood to the rest of her body. It’s measured in what’s called ejection fraction. Normal EF is 55% to 70%; she was at 15%.

“I don’t know how you’re standing upright,” the cardiologist told her.

Amy was given new medicines, told to exercise and to lower her salt intake. In 2020, doctors placed in her chest an implantable cardioverter defibrillator, a device that will deliver an electric charge to her heart if it falls out of rhythm.

What bothered her most, though, were the side effects of her diabetes medicine.

“If I missed a dosage, I felt fine,” Amy said. “So I wondered, do I take the medication and treat my diabetes or do I not take it and go about my day?”

Her primary care physician found a medication to keep her blood sugar in check without making her sick. Along the way, she lost 70 pounds. She had more energy. She joined social media groups for people who had similar heart issues.

That’s where she matched the symptoms she’d been dealing with for decades to CKM syndrome.

Amy made the connection herself after reading about it on the 51Â鶹’s . She followed up with the CKM patient advisory panel. She then took the findings to her cardiologist and primary doctor; neither of them had heard of CKM syndrome before.

“The heart, kidney and metabolic systems are connected,” said Dr. Eduardo Sanchez, the Heart Association’s chief medical officer for prevention, “and, as such, should be treated in a coordinated way.”

The diagnosis made Amy feel “overwhelming and scared,” but also brought “relief and validation,” she said. “It allowed my care to focus on treating me as a whole patient and not just on individual conditions.”

And it gave her the impetus to make the most of every moment – and to nudge Bob, who admits to “not being wired that way,” to do the same.

“When we were in Mexico and she wanted to go zip-lining, I called her doctor and said I didn’t know if that was a good thing,” Bob said. “He told me, ‘Well, she has a defibrillator and if she seems to be having trouble, stop.’

“‘Outside of that,’ he told me, ‘You have to live life.’”

Amy’s story is a reminder that when we understand how the heart, kidneys and metabolism work together, we can move from uncertainty to informed action. Learning about CKM syndrome can be a first step toward recognizing risk earlier and advocating for more connected care.

For health care professionals ready to deepen that understanding, the CKM Health Initiative offers a place to explore interdisciplinary resources, clinical insights and tools designed to support whole patient care for people living with CKM syndrome.

Stories From the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.