Fatima Mathews knew something was wrong. She was more tired than she had ever felt in her life.
“You just had a baby,” her doctor reminded her. “It’s normal to be tired.”
She had been feeling tired – bloated and swollen – since the last months of her pregnancy. And now it was time to get back to work. Mathews figured she’d be fine.
But she felt unwell as she tried to get out of bed that February morning, six weeks after giving birth aged 30. She sat on her bed for an hour, eventually forcing herself to get dressed and head to the insurance office where she worked in Niagara Falls, New York.
She parked near the front door – only 400 feet away – and resolved to overcome the fatigue. “Within ten steps, I knew something was wrong,” she said. “My face started sweating. My shoulder hurt. My heart was beating fast.”
Mathews slumped into a chair just inside the front door. When she finally agreed to go to the hospital, tests confirmed that her problem was indeed pregnancy-related – but not because being a new mum tires you out. She had a rare condition known as postpartum cardiomyopathy. In her case, it left her in heart failure.
“I thought I was going to die,” she said. “And I was going to leave my two children without their mother. I was absolutely terrified.”
Doctors implanted a defibrillator, a small electronic device that monitors his heart rhythm and can correct any dangerous abnormalities, in Mathews’ chest.
For 10 years, the defibrillator did its job. Then the battery died. Replacing it should have been a simple procedure, said Theresa Giambra, who at the time was director of the Cardiac Rhythm Device Clinic in Buffalo, New York, and oversaw Mathews’ care.
“It’s really not a big surgery,” Giambra said. “Often patients go home within 24 hours.”
But Mathews did not return home that day, or even the next day. When she was given fentanyl to ease the pain of the operation, her heart stopped. She ended up in a coma, waking up more than a week later in a horrific state of confusion.
“I remembered my mother and my children, but no one else,” she said.
Unsure of what was happening to her, she fought with the nurses and ripped out her breathing tube, injuring her vocal cords.
When her head finally cleared, she got another shock: While she was in a coma, her family allowed doctors to implant a left ventricular assist device, or LVAD, in her chest. It’s a drastic step when a heart can’t pump blood properly on its own, often used as a way to keep someone alive until they can have a heart transplant, or as an alternative treatment when a person is not eligible for a transplant.
Mathews knew she was a candidate for the device but didn’t want it because the bulky device would restrict daily activities and be difficult to hide. And Mathews, who liked to wear pretty outfits and go out dancing, didn’t want to be permanently tied to all that gear.
“It was vanity. It’s scary when you see it,” she said. “And I didn’t want a hole in my stomach.”
When she came home from the hospital, Mathews had to rely on others. She became frustrated and depressed and refused to leave the house.
“Usually I’m the repairman,” she said. “I fix everything for everyone, but I couldn’t fix this for myself.”
A physiotherapist who came to the house pushed her to regain her health and her ability to function independently. Although Mathews hated the sessions, “if she hadn’t pushed me, I would have stayed in a place of neglect,” she said.
Slowly, Mathews regained his independence and, with it, his sanity. She’s even found ways to camouflage the LVAD gear, stuff it into fanny packs, and incorporate the set into her outfits.
“It helped me gain confidence,” she said. “I wanted to look a certain way.”
Above all, Mathews wanted to be there for his children. And now, with the heart-pounding LVAD, she can be.
They go on a cruise. They go to Disneyland. And, she finds herself with her friends. “I’m still going out and dancing and going to parties. I’m still living,” she said.
Mathews expanded his social circle to include other LVAD patients.
She started by chatting with people at the hospital where she had her procedure. Now the hospital calls on him to help give a patient perspective.
“I tell my family, my friends, anyone about what it’s like to live with an LVAD,” she said. “I tell them about the medications I take. How I live, how I sleep, how every night I plug into the wall and put my batteries in a crate.”
Then his doctor recommended that he volunteer with the American Heart Association. She now shares her story at various events.
Giambra likes to call Mathews “Wonder Woman” because of all she endured “with grace, strength and triumph” and her commitment to maintaining a positive attitude and standing up for others.
“Even when she receives horrible news, she says, ‘Oh, I’m blessed. I just want to be here for my kids,'” Giambra said. “I tell him, ‘You must be the face of surviving heart failure.'”
Mathews, now 43, realizes that going from anti-LVAD to LVAD advocate gives her a unique perspective.
“God gave me a second chance so I could help someone else,” she said. “If it’s just one person I’m helping, I’m grateful.
“Now I’m happy. I’m living life. We’re making memories.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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