Tiara Johnson’s second pregnancy went well – until last month.
“My fingers were so swollen that I couldn’t wear my wedding ring,” she said.
The problem was his blood pressure. And the increase in blood pressure is due to preeclampsia, a complication of pregnancy that usually manifests in the last few months.
Tiara, who lives in Fraser, Michigan, received medication to control her blood pressure. It didn’t work, so a few days later she was sent to the hospital for induced labor.
After giving birth to her second daughter, Azuri, Tiara’s blood pressure remained elevated. When she returned home a few days later, she could not get comfortable.
“I didn’t feel well,” Tiara said. “Sitting or lying down, nothing was better.”
She returned to the hospital. She was treated for fluid retention and sent home. She continued to feel tired but attributed it to postpartum recovery and living with a newborn.
Two months later, Tiara passed out in the parking lot at work. Taken by ambulance to another hospital, she received a different diagnosis: peripartum cardiomyopathy, a rare form of heart failure that occurs during the last month of pregnancy or within the first five months after childbirth. A doctor said his heart was functioning at 10% of its normal function.
“I was confused and distraught,” she said. “When you think of heart failure, you don’t think of someone who is 26.”
For the next three and a half years, Tiara was constantly in and out of the hospital as doctors worked to relieve the pressure on her heart. Then, in August 2018, doctors wanted to implant a left ventricular assist device, a machine that basically does the work for the left side of the heart. An LVAD is often used before a patient is put on the waiting list for a heart transplant.
However, there was another obstacle. Tiara had to lose weight to become eligible for the list.
Working with a nutritionist, she learned to cut out fried foods and fast foods. She ate more meals at home, many of which included more vegetables than before. She also tried intermittent fasting. During this time, she began the process of getting an LVAD. She received it in March 2019 and continued her weight loss journey.
By April 2021, she had lost 110 pounds. She had reached the acceptable range to receive a heart transplant, so the listing process began.
She received a place on October 14. Two weeks later, she was hospitalized with a severe aortic valve leak. Doctors feared she would soon need open-heart surgery. Instead, on November 5, she was moved closer to the top of the transplant list. She too was sent home.
The next day, Tiara was waiting in the car while her husband, Gvon, drove to a store to buy cold medicine for their eldest daughter when her phone rang. Caller ID showed it was the University of Michigan Hospital in Ann Arbor. Within an hour, she was on her way to the hospital.
“I couldn’t believe this was happening,” she said. “It’s what I had worked hard for all this time and now I was going to have a new heart. Even when I got to the hospital, it was hard to deal with.”
Several days after the transplant, Tiara was doing laps around the unit. She even tidied up her hospital room.
“Once I got up it was like, ‘Let’s go. I’m not going to lie in this bed being miserable,’” she said.
Then came learning to get used to having a properly functioning heart.
“When I started walking, I was like, ‘Tiara, you better slow down or your heart is going to race.’ But the monitor was normal. I was just normal,” she said.
Tiara went home on Thanksgiving. But the party quickly ended. Azuri, now 6 and visiting Tiara’s godmother, had a high fever and was struggling to breathe. She tested positive for COVID-19 and was admitted to hospital with pneumonia.
Azuri was hospitalized for five days, then quarantined in her room at home for another two and a half weeks as a precaution due to Tiara’s weakened immune system. Tiara then caught the flu, sending her to bed for two weeks. Once healthy, she returned to cardiac rehab.
Tiara always finds herself automatically reaching for her LVAD only to find it’s not there. “I have to remember that I’m free, I don’t need that anymore.”
“Just to see her smile, that’s all,” Gvon said.
Now 32, Tiara continues to focus on her recovery and her future. She’s taking classes to complete her associate’s degree in social work this spring before pursuing a bachelor’s degree.
“I feel amazing now,” she said. “I know I can do it.”
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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