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Tiara Johnson

Source: Tiara Johnson / Tiara with daughters Aranee and A’zuri

Like most mothers Tiara Johnson is seeking to build a bedrock foundation on the tenants of faith and family.

Over the past five years she’s endured one of the most emotionally taxing, yet transformative years of her life as a survivor of cardiovascular disease.

“The biggest thing in my opinion, is your mental strength,” Tiara, 31, told NewsOne. “My faith honestly is what still has me here. My faith is what’s fueling me, what’s keeping me going.”

As a Black woman and mother, a population that suffers disproportionately in terms of health disparities especially relating to heart disease and the maternal mortality rate, Tiara is working to use her voice to shine a light on her condition which often goes undetected.

The journey has been one that has also affected, yet strengthened her loved ones, which includes her husband Gvon, and daughters A’zuri, 5, and Aranee, 13. Her sister Latoya Swift, who she calls “her right arm,” is also someone she turns to for support.

In August 2015 after giving birth to her youngest daughter A’zuri, Tiara developed Peripartum cardiomyopathy, also known as postpartum cardiomyopathy (PPCM), a rare form of heart failure that develops during the last month of pregnancy or up to five months after giving birth.

“My pregnancy with A’zuri was really normal,” Tiara said, expressing that she worked as a volunteer at her oldest daughter’s school until she was eight months pregnant.

“My last month of pregnancy is when things started going down south. My blood pressure just got really, really out of control,” resulting in her being induced.

Tiara described the birth as “grueling,” an experience she thought would be easier several years after birthing her first child. Five days after birthing A’zuri she noticed that her health was severely declining during a routine shower.

“As I’m in the shower I literally can feel fluid like I’m drowning every time I inhale and exhale,” she said, prompting her family to rush her to the hospital. When she arrived, she was told that her experience was “normal.”

At her urging that something was indeed wrong, physicians conducted a heart scan which discovered a function rate of 45 percent. Months later in October, her heart function declined to less than 10 percent.

“It’s a gratitude moment, a humbling moment to just be thankful for everything that has been given to me.”

She was hospitalized and diagnosed with severe heart failure. At the time she was only 25-years-old.

“That’s so surreal, when you think of heart failure, you think of older people and your grandparents or something like that, I wouldn’t associate it with someone like me,” she said.

Tiara Johnson

Source: Tiara Johnson / Tiara with her husband Gvon

“I was at the hospital for a couple weeks and they had to send me home on what’s called a life vest as a defibrillator just in case my heart stopped,” said Tiara.

A year later Tiara underwent surgery to implant a heart defibrillator because her heart rate function never moved past 10 percent.

In between that time before receiving the defibrillator, she worked 50 hours a week as a program manager at a non-profit, as well as standing in her role as family matriarch.

Tiara feels extremely hopeful as she awaits a heart transplant after receiving a HeartMate LVAD or left ventricular assist device, In March 2019. The LVAD functions as a vessel to help her weakened heart pump blood.

“If I didn’t get the LVAD I wouldn’t be here talking to you. That’s how sick I was,” she said.

The LVAD has significantly improved her quality of life, and she’s grateful that technology has increased her access to creating a new normal.

While she has a loving family who stands in the gap during her roughest times, she expresses that there are surely difficulties in adjusting to her diagnosis.

Physically, her condition limits her to certain activities that she previously enjoyed partaking with her family like skating and biking.

The frequent, long term hospitalizations are also difficult, which keep her away from her loved ones.

“I missed my daughter’s (Aranee) birthday three years in a row,” she said. “I felt really bad about that but I had to reassure her that we want mommy to get the best possible help, the best possible care so I can be here for you. I want to be alive.”

Tiara also fought COVID-19 in March of this year, but stated that while she was concerned due to her underlying medical condition, she did not develop debilitating symptoms after contracting the disease.

“It’s a gratitude moment, a humbling moment to just be thankful for everything that has been given to me.”

With all of the changes in her life, Tiara said she leans into self-care and community care as an avenue to develop healthy coping mechanisms. She indulges in getting curious about herself, which she learned through visiting a therapist over the last two years, as well as prayer and meditation.

“I had to take a step back and say, ‘Tiara what are you doing for you?’ You can’t be here for everyone else and save everyone else if you’re not taking care of you. You have to grab that mask first for yourself.”

One of her proudest moments was launching her advocacy organization “Pretty Red Engine,” on Valentine’s Day this year in hopes of helping others who may be experiencing her particular lived experience.

“I didn’t see anyone who looked like me, that was young like me, African-American like me, nobody I could relate to,” she said.

The blog references the engine of a car, which aligns with how the heart operates in the body.

“The same way you would take care of your vehicle and you get maintenance and you get an oil change, you have to do that same maintenance on yourself and your health.”

“I just wanted to make it cute,” she said with a laugh. “I hope it’s catchy.”

“You can still look cute, you can still get your nails done get out here and enjoy life and restore hope into people that have been diagnosed. Normalize discussions around cardiovascular disease.”

“I had to take a step back and say, ‘Tiara what are you doing for you?’ You can’t be here for everyone else and save everyone else if you’re not taking care of you. You have to grab that mask first for yourself.”

Through blogging about her experience, Tiara says she’s able to reach others who are living with heart failure.

“You have to find your why to keep going and use that as fuel to motivate yourself to not get down in the dumps and stay there,” is a message that she often shares with her supporters.

Tiara Johnson

Source: Tiara Johnson / Tiara Johnson

“You have to advocate for yourself and it’s so very important to be educated on those things. I truly just want to use my time spreading awareness on PPCM and how to promote a great cardiovascular system. It’s definitely needed. We’re losing too many people younger and younger.”

Tiara also feels that along with advocating for oneself, there’s a reckoning that must occur among physicians and the medical industry. Black women are dying at unprecedented rates postpartum and during their pregnancies due to preventable health issues going undetected. Systemic racism which induces high stress levels, also affects the outcome of Black birthing people despite their level of education or economic status.

“It’s time for people to wake up and see what is happening. This data has been going on for years undetected and it’s time,” Tiara said.

When talking about the maternal mortality rate and how it affects Black women, Johnson believes that the discussion around PPCM should be prioritized and included in those circles of conversations.

“That should be standard at the very minimum, let’s normalize that. Because if you know you’re serving a population that is encountering all of these diseases and conditions in addition to other things you have to do your due diligence as a physician, as a medical profession. And if testing early, the success rates are phenomenal if you can catch it early.”

“My Mother’s Day wish for Black mothers as a whole is to genuinely love on themselves. We try so hard to be superwomen and wonder women that we neglect ourselves so much,” she said. “I hope that this mother’s day that mommies all around will really be able to sit and enjoy life and being a mom and their families, to just relax. We don’t have to have on our cape 24-7.”

“For me, I want to keep fighting, keep going,” she continued. “My story has the power to save lives. In addition to really doing more with my kids and my family, I want to get better. Keep moving forward. I know my heart transplant is closer than I think and I’m so excited and looking forward to what God has in store.”

SEE ALSO:

Cori Bush Pushes Back After Using Gender-Inclusive Language During Powerful Testimony On Black Maternal Health

App Focused On Black Maternal Health Receives $200K Grant

‘My Story Has The Power To Save Lives’: A Black Mom Living With Heart Disease Shares Her Mother’s Day Wish  was originally published on newsone.com

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