Heart failure was plaguing a young Wisconsin mom named Kathleen Shores when she flat-lined in Froedtert Hospital's ICU last year.
Shores had been suffering from hypertrophic cardiomyopathy - a thickening of the heart tissue - for years. As a teenager, her congenital heart issue had been misdiagnosed and so her condition went untreated for years, resulting in a lot of damage. She needed a new heart, but transplant wait times are growing longer across the country.
When her "heart failure finally got the best of my heart," Shores says her doctors knew implantable devices would be the only option - medicine would no longer work.
The problem was that there were no such devices for Shores. Most heart failure patients get a ventricular assist devices (VADs) to treat one side of the heart; both sides of Shores' heart no longer worked. The devices that could help both sides pump blood were made for larger people - not an option for the small-in-stature Shores.
So last November, her doctors at Froedtert, including Dr. Claudius Mahr and surgeon Robert Love, took drastic measures and removed Shores' organic heart. They replaced it with a device called a Total Artificial Heart. Two hoses go through her abdomen and attach to what remains of her heart tissue. A battery-powered machine pumps compressed air into her heart to determine how much blood is pump, at a rate of 130 beats per minute.
"It's kind of like one of them small vacuum cleaners that you have at your house that you can put your attachments on, it's about the size of it," she says. "In a backpack, it's 15 pounds."
It's a rare and risky treatment. Though she spent months in the hospital recovering from the surgery, Shores says she wasn't giving up on life and so she didn't have time to be scared.
"They pretty much said, 'This is your only option,' and thank goodness this option was out there," she says. "I didn't have reason to be scared, because I didn't know anybody who had been through it. Anything had to be better than what I was going through at the time."
Describing heart failure as simply "miserable," Shores says before the artificial heart replacement, she had "unbelievable" fatigue, light-headedness, dizzy spells and heart palpitations. She couldn't drive, walk or eat. Each day was a struggle for the then-new mom.
"I would get up in the morning and give them their sippy cup of milk and I'd have to lay down on the couch," she says. "Then I could get up and get them breakfast, and then I'd have to lay back down on the couch."
But since the surgery, life has changed.
"It's amazing, I haven't felt this good in years, because I'm finally getting all the oxygen I was supposed to have that I haven't had for years," she says.
Today, the 45-year-old Shores is one of only 100 or so patients with the device who have continued their recovery at home while waiting for a transplant. Using a stroller to move her device around, she spends time with her now-teenage children, goes shopping, visits with friends, and lives her daily life.
Shores knows she is still in desperate need of a new heart. Doctors don't actually know how long artificial hearts can last in the body; so far, the longest surviving patients have had their devices for three years.
"There's definitely days when I get up and think, 'I can't believe I have to lug this thing around again, it's so heavy,' and then the thought's gone, because without it I wouldn't be here," she says.
She hears the reminder of her artificial heart all the time.
"What you're hearing is the sound of life. It sounds like galloping. It sounds like a baby's ultrasound when you heart the heartbeat," she says.
And she is constantly running on power - either by battery or by plugging in at home or to her car. "It's really amazing, it's like being plugged into my smart car, but I have a smart heart."
As she waits for her new heart, Shores has become active in urging women to be their own medical advocates, citing her own misdiagnosis.
"Women need to take care of themselves and not just the home and their husband and their kids," she says. "I put foot down and was raring to go to get a doctor who was going to listen to me."
