Heart Failure at 25: An Unexpected Journey

Tiara Johnson is 31.

But there was a time, not very long ago, that she feared she might not see 27, because time seemed to be running out just when she needed it most.

In July 2015, 25-year-old Tiara was far too busy to be ill. She and her husband Gvon were expecting a second child, while raising her first and working a full-time job. Then, a week before her due date, "My blood pressure just got really out of control. During the labor I knew something was wrong because it was nothing like my delivery with my first daughter, Aranee. It was gruesome, painful, but A'zuri arrived healthy, with seemingly no complications for either of us."

"It Felt Like I was Breathing Underwater."
"The day after we went home, I noticed that I couldn't breathe and it wasn't relieved by lying down or sitting up or anything else," Johnson said. "I went to take a shower and it felt like I was breathing underwater when I was inhaling. You could literally hear the gurgling of how much fluid I had in me. We ended up calling 911 and returning to the hospital.

"The fluid was removed and I was sent home, but from August to October, my heart function declined tremendously. In August, my ejection fraction was at 45% which was below what it should be, but by October when I returned to the ER it was less than 10% (note: ejection fraction is a measurement of the percentage of blood leaving the heart each time it contracts, with a normal range being 50-75%, according to the American Heart Association¹). That's when I was diagnosed with postpartum cardiomyopathy, a pregnancy-induced heart failure. It was my birthday weekend…"

At a time in her life when the young mother's biggest health concerns should have involved something like one of her daughters catching a cold from the other, Johnson was in full-blown congestive heart failure. "They didn't know that I would recover or what was going to happen."

Next came a series of interventions designed to improve her heart health but none made a substantial impact. While her friends were talking about their jobs and children's milestones, Johnson was learning about echocardiograms and assorted interventions that might save her life. "I had a life vest for six months or so, followed by a biventricular ICD (implantable cardioverter defibrillator), but after a year, the situation hadn't improved.

"I kept thinking, I'm 25. I'm young. Next time I go to the doctor, they'll tell me I'm better. Well, oh, was I wrong," said Johnson. Like a lot of people, Johnson thought serious heart conditions were reserved for the elderly.

But that is not the case.

She learned all too soon. "My heart function wasn't getting better and I was working 60 hours per week as a program manager. My husband was telling me to stop, that I was killing myself, because I would literally be at the hospital for a week, be discharged and go back to work right away."

"Then in October 2018, I was shopping when I went into cardiac arrest and by December I had another defibrillator implanted. Things didn't improve and I returned to the hospital within a couple of months."

"I am Talking to You as a Mom…"
"While I was at the hospital, the staff wanted to work me up for an LVAD (left ventricular assistive device), but at first I was told I wasn't a candidate. I got upset and I left the hospital."

About an hour later, she received a phone call that may well have changed her life.

"I'll never forget. Her name was Val. I kept the recording all these years, just to remind me what I went through. She called me and she was almost in tears. 'If you don't come back to this hospital, please, you have to go somewhere because you're too sick to live at home at this point. I'm talking to you as a mom. Not as a nurse, not as a medical professional. I'm just talking to you as a mom. You need to get help.' And so I got right back in the car and went to the University of Michigan Hospital. A few days later, I had my HeartMate 3 LVAD^TM."

Marching to a Stronger Beat
The HeartMate 3 is a mechanical heart pump implanted in the chest, attached to the native heart, to help pump blood for the weakened muscle. The device allows more oxygen-rich blood to flow throughout the body, resulting in easier breathing and less fatigue.

The impact was immediate. "In the three years prior to the LVAD, I had over 150 hospital stays. In the two years since the HeartMate 3 was implanted, I've had zero heart failure-related hospitalizations.

"I tell people who are discussing getting LVADs with their physicians, to make an informed decision, but it's the best decision I ever made."

But she's not giving sole credit for her renewed cardiac health to the HeartMate 3.

She also has an implantable heart failure monitoring sensor that is clinically proven to significantly reduce hospital admissions when used by doctors to manage heart failure². "My CardioMEMS is small, but powerful because it has also helped keep me out of the hospital."

These remarkably compact devices are just two of the innovative technologies that Abbott has developed to treat serious medical conditions. This Tiny Tech can have substantial human impact on patients like Tiara Johnson.

Tiara Johnson

You're Never Too Young to Teach
The combination of the heart pump and heart monitor has given Johnson a renewed energy that fuels her passion to help others. Her journey has been an education and one that she is eager to share. She and Gvon are blessed with Aranee, now 13, and A'zuri, who just turned 6 and has shared every minute of her mother's medical highs and lows. She is grateful to see her girls grow happy, healthy and wise (each has been double promoted at school) and is eager to teach others the lessons she has learned.

Johnson started a new site this year. It's a faith-based advocacy and awareness organization that focuses on three key areas for women and cardiovascular disease, especially congestive heart failure and postpartum cardiomyopathy:

• 1. Prevention: Dismantling the myths of the disease, like that it only impacts older people.

• 2. Response: Restoring hope in women who have been diagnosed, nurturing them toward better overall health and teaching them how to deal with challenges.

• 3. Education: Normalizing, and encouraging, more discussion about women and cardiovascular disease.

"My mission is to help women so they won't need a transplant or LVAD, if they can be avoided, and just to be a hub where women can get information and learn more about the disease. I'm not a medical professional. I can only speak from my experience and how important it is to develop a healthy relationship with your cardiovascular team.

"A lot of women don't have the support they need. I want to create a community of women that empowers others and spreads awareness."

Tiara turns 32 later this year. She did not spend her time growing up thinking that she would need to face down a series of critical health issues in her mid-20s. But she is now making the most of her time, and renewed good health, by taking care of her family and a community of women she has not met in person, yet understands so well.

References:
¹ https://www.mayoclinic.org/ejection-fraction/expert-answers/faq-20058286
² CardioMEMS Sensor Reliable, Safe; Hospitalizations Reduced by More Than Half - American College of Cardiology (acc.org)