Erin Ivory has a broken heart.
In medical terms she has cardiopmyopathy leading to heart failure.
The mother of four, accomplished triathlete and healthy eater thought she was doing everything right. But the one thing she didn’t do is now threatening her life.
Every day at the Ivory house is packed with activity thanks to two 5-year-old bundles of joy.
While the little ones play and make snacks, the older siblings are at school. The sweet family is topped off with two teenagers.
“And we feel this pressure to have it all under control,” Erin Ivory said. “Your own job and deadlines, you know, your marriage and not having enough time.”
She carved out time to exercise -hard.
“Her slow speed is top speed for me,” husband Demetrius Ivory said.
“I did the Half Iron Man and I had trained hard for that race,” Erin Ivory said.
Even exhausted, crossing the finish line brought a smile, as did telling Chicagoland viewers good news stories.
“And I love my job,” she said. “But here I was sitting there thinking I was so healthy…”
That’s not what the Dr. Esther Vorovich found.
Vorovich is an assistant professor of medicine in the advanced heart failure section of the division of cardiology Northwestern Medicine.
“Erin is a great example of how patients can be pretty sick on the inside but look great on the outside,” Vorovich said. “Because if you passed Erin on the street, you would say she’s doing great. …In reality her heart was pretty sick.”
The first sign came shortly after the twins were born.
“It was the middle of the night and I woke up and it just felt like it wasn’t heartburn,” she said. “It was just like a sharp pain in the middle of my chest. I thought, ‘Well, that’s something bizarre because we’ve been busy. We are not getting a lot of sleep.’ … I think as a woman especially you always make excuses for what you are feeling. Right? You got to take care of everybody else. Whatever this is, this little thing, it’s going pass. And you’ll be fine. So I did, I ignored it.”
Erin Ivory’s EKG, a measure of heart rhythm, came out abnormal. But she said she made excuses.
“Because I thought maybe I went in and I was a little stressed that day,” she said. “There’s always an excuse.”
The same haunting pain returned, this time in the water as she competed in a race.
“I was a quarter of the way into the swim and I started gasping and feeling that same pain,” she said. “And I thought maybe I am having a panic attack.”
This time, like last, she got an EKG. It was abnormal again. Yet she waited to seek medical help.
“Because it wasn’t possible that I was having heart issues,” she said. “I mean I was in the best shape I had been in in years!”
“Even if you feel well and even if you’re exercising and able to exercise more than your doctor, you should still take this very seriously,” Vorovich said. “Because we can prevent really bad problems down the line. And we can prevent progression.”
If Erin Ivory had gotten help initially, Vorovich said she would have “100%” offset some of the damage to her heart. Instead over the years, her heart function began to fail.
“Her lowest that we saw was 28%,” Vorovich said. “The fancy word is a dilated non-ischemic cardiomyopathy.”
Meaning, she has no artery blockages, she just has a weak heart, genetically.
“It’s nothing necessarily that she did to herself she just drew the short straw,” Vorovich said. “And that’s where we think the genetics factors in.”
Over time as the heart did not pump enough blood out, clots formed.
The biggest fear, the clots would travel.
Dr. Karen Ho is assistant professor of vascular surgery Northwestern Medicine.
“That’s a very serious risk, blood clots to the brain can cause stroke unfortunately,” Ho said. “She was started on a blood thinner right away which decreases that risk.”
But by then multiple clots had already traveled to her leg.
“I went from being told I had a weak heart, to blood clots to now blood clots taking over all my organs and my legs, and my toes. I didn’t have feeling in my toes,” Erin Ivory said. “My kidneys stopped working and I was down to one kidney.”
As doctors worked frantically to fix her heart and the subsequent medical consequences, other hearts were breaking. She had given Demetrius Ivory a sobering request before she went to the hospital.
“And he’s driving and crying and telling me he’s not going to talk about this,” she said. “And I am adamant because I’m thinking if I don’t come back out of this hospital, this is my only shot.”
“’If something happens to me, raise these kids right. Be a good man,’” Demetrius Ivory said. “Things like that on the drive to the hospital. With two 5-year-olds in the backseat. That was tough.”
“The twins were confused and I would call and try to sing to them but a lot of times I felt so sick in the hospital I was throwing up, even a phone call was hard,” she said. “And one night Lulu said, ‘Mom if you die, can I come see you before you die?’”
Heart surgeon Vorovich wasn’t about the let that happen. She aggressively prescribed medications she hopes will eliminate the need for a heart transplant.
“The more of those medications that we can get on board, and the higher the dose, the better we will be at giving the heart a chance of recovering to normal functioning,” she said.
A lifelong sentence. Lots of medications. And no strenuous exercise.
She is slowed but not silenced for this woman with a giant, albeit broken heart and a gift for telling stories, she wanted to tell her own.
“One of the doctors in the hospital said, ‘When you are feeling stressed, you need to say is this worth dying over? And if the answer is no then you need to let it go.’” she said.
One of the keys to reducing further heart damage is squashing stress. Northwestern Medicine has a psychologist Gail Osterman PhD on staff to help.
“That’s a huge part of stress, accepting what’s going on in your life,” Osterman said. “And that’s the first step – you accept what’s going on, you change what you can change and you have to let go of the rest.”
“I am not as strong as I thought I was, but in so many ways I feel like I am ten times wiser,” Erin Ivory said.
“Get your check ups like you were supposed to,” Demetrius Ivory said. “Whatever the doctor says, whatever all the guidelines say, get everything exactly when you were supposed to do it. Don’t push it. Don’t just say, ‘I’m fine.’”
“I was given a second shot, that’s how I see it,” Erin Ivory said. “Instead of having everything, what I am hoping to my kids take away from this is it’s okay to be okay with what you’ve got.”
She is still recovering at home. The clots in her legs appear to be dissolving and Vorovich says she hopes to have Erin’s heart function back to more than 50%.
Sadly in this country 50% of people in heart failure do not survive five years. Doctors say that is mostly because of other underlying conditions and a lack of commitment to making a meaningful change in their lives.