Have You Ever Thought You Might Have FH? – Madi’s Story

Madi always knew high cholesterol ran in her family, but she assumed everyone had it under control. That’s why one day in 2016 caught her so off guard. She was just 23 years old, but she knew she was having a heart attack.

“It kind of happened out of nowhere,” says Madi. “I had no symptoms up until 2 days before. I had a little tightening in my chest, and I just thought maybe I worked out too hard and was simply sore. I brushed it off.”

“That’s when it hit me. I said, ‘I’m having a heart attack.’”

The day before her heart attack Madi was exhausted. “All I could do was sleep that entire day. I couldn’t get up. I didn’t eat. I just slept.”

When she finally got the energy to get out of bed, she was at a family friend’s house and suddenly had to sit down. Madi explains, “That’s when it hit me. I said, ‘I’m having a heart attack.’ I knew what it looked like because I worked in the medical field – I still do.”

Her friends looked at Madi like she was crazy. “They said ‘you’re only 23, how could you possibly be having a heart attack?’” But Madi knew what was happening. She asked her friends for an aspirin and an ambulance. “Thankfully they listened, and I ended up in the ICU for a week.”

“I felt like this exotic fish no one had ever seen before.”

At 23 years old, Madi had a 100% blockage in the left coronary artery, also known as the widow maker. She was a mystery in the ICU. “I felt like this exotic fish no one had ever seen before,” she explains. “Doctors came in and out of my room trying to understand. I didn’t feel human.”

In the end, Madi was told she was recovered, not to drive for a week, and she could go home. They told her this was something she’d deal with the rest of her life, and it will likely happen again.

“Madi, have you ever thought you might have FH?”

Shortly after her heart attack, Madi went back to work and was discussing the ordeal with a colleague. “She was listening, nodding her head, and she says, ‘Madi, have you ever thought you might have FH?’”

Her colleague explained to her that FH was familial hypercholesterolemia, a genetic condition that causes high cholesterol. “I told her I know that high cholesterol runs in my family, and she said ‘No, that’s not all that is. I have a doctor for you.’”

At that point, Madi was willing to do anything and see any doctor that could help make sure she didn’t have another heart attack. She felt like she had a ticking time bomb in her chest when she saw her new doctor.

“Within two minutes he said, ‘you have FH.’”

“They got me in pretty quickly. He had already looked at my chart and within two minutes he said, ‘you have FH.’” The doctor explained FH and the treatment options to Madi. He told her they were going to be aggressive in their treatment so she could live a long life.

“When you hear that, it sounds great, like it’s raining unicorns and rainbows. It so exciting. But the thought that you won’t live past your 40s doesn’t go away. I needed more reassurance,” she says.

“The Family Heart Foundation brought me a sense of safety and security.”

That’s when Madi searched online and found the Family Heart Foundation.

“They brought me a sense of safety and security.” She felt like she found a place where she belonged.

“The biggest impact the Family Heart Foundation has had on me is seeing the passion for change, and not giving up when it comes to that change.” It’s that passion that pushed Madi to become a Family Heart Advocate for Awareness.

“What happened to me, and what’s happened to so many others, is preventable.”

Today, her LDL is being treated and managed. “The doctor who diagnosed me with FH also told me he was going to get my LDL down to 40 mg/dL. I laughed right out loud. I was like ‘alright, doc.” I thought he was joking.”

But it did happen. And now Madi is dedicated to educating others.

“It’s important to have education from the pediatrician through someone’s entire life. That way they don’t have to live what I lived. What happened to me, and what’s happened to so many others, is preventable.”

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