Sudden cardiac arrest. Age 13. In seventh-grade gym class. The words seem incongruent.
But that’s how Fabiola Garnett’s heart journey began, when she lived in Toledo.
“I was training for a 5K in school in seventh grade,” said Garnett, now 32. “Every seventh-grade class had done this. I was walking because I had difficulty running.”
It was an early sign, but no one picked up on it at the time. Back then, in 1999, Ohio doctors diagnosed her with exercise-induced asthma.
“From what I was told, I was with my teachers at the end of class and I ran up to meet up with my friends,” Garnett said. “That’s when I went into arrest. I just dropped. My gym teacher performed CPR. She is my hero. And I was lucky enough that my school was only a few minutes from the hospital.”
That’s where Garnett woke up. In the hospital. Unfortunately, she awoke to a lifelong nightmare.
“They kept me in a medically induced coma,” Garnett said. “When I woke up they told me, ‘You have a heart condition and we put in a cardiac defibrillator and this is what your life is going to be like.’”
The defibrillator took care of her heart problems for many years.
Fast forward to fall 2015.
A failing heart
“I felt fatigued and had trouble breathing,” Garnett said. “I had a lot of dizziness. I assumed I wasn’t getting enough sleep and was working too much. I didn’t think it was anything serious, but in 2016, I started to decline.”
She couldn’t get through a workout without stopping. She’d get dizzy doing squats.
“I had some bad heart days,” Garnett said. “I couldn’t get out of bed some days because I was so fatigued and so tired.”
Garnett sought out the only person she thought could help her—her cardiologist.
“I thought maybe I had to get back on medication,” she said. “I thought I had to get back to something to normalize my heart.”
By this time, she noticed swelling in her feet. She coughed frequently. She had trouble sleeping.
Next came a nightmare.
On a warm July day in 2016, as she walked through an Ann Arbor grocery store with her boyfriend, Jake, she suddenly felt sick, nauseous and dizzy. She fainted in the parking lot. Jake caught her.
“I came home and went to sleep,” she said. “I took it easy.”
As a then-30-year-old, she felt like she’d become stuck in the body of a 90-year-old.
She saw a cardiologist at a medical center on the east side of the state who ordered a stress test, echocardiogram and EKG.
The results were not what she wanted to hear.
“She said, ‘I’m worried about you,’” Garnett said. “She said I had gone into heart failure and she thought I was on the road to a transplant. I was not expecting that news at all. I was devastated, I was shocked. I thought the condition had plateaued. I was not expecting to hear that my heart was failing.”
Although it hasn’t been precisely determined, Garnett suspects there’s a genetic realm to her heart condition. Two of her mom’s brothers died before age 30.
She didn’t want to carry on the family tradition.
She visited a heart failure specialist near her Ann Arbor home. She tried several medications and underwent heart catheterizations.
Her condition worsened. She’d feel nauseous after eating and her chest would hurt. Working as a licensed esthetician, performing facials and waxing services, she often had to lean on something while she worked.
I had that moment to look into myself. I knew there was nothing more I could do. I had to let go and have faith in the surgeon and faith in the team. I just had to let go.
Despite her increasing difficulties, her heart failure specialist did not want to put her on the heart transplant list.
“His biggest reasoning was that I was so young,” Garnett said. “My quality of life was going down. How much more sick would I have to be? I didn’t want to get so sick that I couldn’t recover.”
At the beginning of 2017, Garnett took her health into her own hands. She called the director of the Hypertrophic Cardiomyopathy Association in New Jersey.
“She looked at all of my test results and paperwork,” Garnett said.
She then got a referral to see David Fermin, MD, a Spectrum Health Medical Group cardiologist specializing in advanced heart failure. Within a month, Garnett made it in for an appointment.
“He went through my echo, every single part of my testing,” Garnett said. “He believed I would need a transplant.
“He was concerned my heart was failing at a fast rate and concerned there were things they couldn’t see because they couldn’t do an MRI on me,” she said. The defibrillator she received at age 13 precluded her from getting an MRI.
“I was amazed at how he listened to me and my symptoms,” she said.
Dr. Fermin said Garnett’s hypertrophic cardiomyopathy, a genetic disorder, caused abnormal thickening of the heart muscle.
“It can cause a variety of problems, including obstruction of blood flow, heart failure or sudden cardiac arrest,” Dr. Fermin said. “In her case, the first symptom leading to her diagnosis was a cardiac arrest at age 13. She had a defibrillator implanted and lived with it for many years. Eventually, the abnormal heart muscle became stiff and scarred, leading to end-stage heart failure.”
Garnett’s health declined as she continued to show signs of advanced heart failure—fluid retention, low blood pressure, passing out and limitations in daily activity.
“She compensated for these limitations for quite a while, which is common for young patients,” Dr. Fermin said. “But I often point out that they’re no longer able to ‘act their age’ when they can’t do exercise, dance or even keep up on a walk with their peers.”
But falling behind on a walk is minor compared to heart failure’s final destination. It typically leads to death in six months to two years, according to Dr. Fermin.
The only detour from death? Finding a new heart.
Hope for the heart
Instead of fearing transplant, Garnett actually felt relief.
It had been one of few stones left unturned in her search for hope and good health. She had tried medications and catheterizations. She lived a healthy lifestyle. She ate right.
A transplant gleamed bright—the only ray of hope she had left.
“At that point I had gotten so sick that transplant had become part of hope for something new, something different, so I could feel better,” she said.
Of course, she felt nervous. And scared. But most of all, grateful that she had an answer. And a path to follow. By grace, she hoped, a path that would lead to health.
Dr. Fermin admitted her to the hospital in March for four days of transplant workup. By the end of April she was officially listed on the transplant list.
“On May 6, I went in for a cardiac catheterization,” Garnett said. “I was in ICU. I needed to be on two IV medications to stay alive. I just knew in my heart as soon as I go in, I’m going to be there and won’t get to leave until I get this heart.”
But being on the transplant list doesn’t guarantee a timely heart.
“You don’t know if it will be one month, several months, a year,” she said. “You have to wait for that perfect heart to become available or you get so sick that they just give you the closest match.”
Garnett fell into the latter category. Medications no longer worked. She felt terrible. She tried her best to keep up with work, calling clients and updating websites. She colored. She read books.
Family visited and she enjoyed talking with her ICU nurses and staff at the Spectrum Health Richard DeVos Heart and Lung Transplant Center.
She tried anything and everything to keep her mind off what could be her fate if a heart didn’t happen.
But on May 25, her fate revealed itself.
“When they came in and told me they had found a heart, everything happened so fast,” Garnett said. “They’re prepping you. Then there’s a quiet time while you wait for them to say, ‘This is a go.’”
She reflected during that quiet time, doing everything she could to calm her nerves.
“I had that moment to look into myself,” she said. “I knew there was nothing more I could do. I had to let go and have faith in the surgeon and faith in the team. I just had to let go. That got rid of a lot of anxiety for me.”
Garnett doesn’t know what angel gifted her the heart that late May day. She just knows she is eternally grateful.
“I haven’t chosen to reach out to the donor family yet,” she said. “I’m just not ready. But I have recovered incredibly well. I’ve gained a lot of strength back. My life is pretty normal.”
She returns to Grand Rapids once a month for visits with Dr. Fermin.
She’s training for a 5K.
“I always wanted to be a more active person,” Garnett said. “I worked hard to find a way to be physically fit while working around my heart condition. I’m actually able to jog now. I walked and jogged my first 5K in September, which was huge for me. I never had done that before because of my heart condition.”
She plans to pay tribute to her heart donor on a meaningful weekend this May.
“I’d like to organize a 5K as a memorial for my donor,” Garnett said. “That’s something I will try to make happen in May. In Grand Rapids. That’s where everything happened for me, so I’d like to do it there.”
She speaks at American Heart Association events, teaching CPR and sharing her story.
She’s also trying to reach out to young people battling heart issues, much as she battled those conditions as a 13-year-old.
Garnett started a small business called “Heart Warrior,” which features branded apparel and plush lions that read, “I’m a Warrior.”
“I give those to kids with cardiac conditions,” Garnett said. “I had all these plans for such a long time. ‘Maybe one day I’ll get to do this, maybe one day I’ll get to do that.’ Now, I get to do this. I have a future in front of me that I was never sure of.”
Dr. Fermin said he’s confident in that future, too.
“Fabiola did very well post-transplant and has resumed an active lifestyle, including work and exercise, even completing a 5K within months after transplant,” Dr. Fermin said. “Her prognosis is excellent, measured now in decades instead of months or a couple years.”
Dr. Fermin said Garnett’s dedication to a healthy diet and exercise—and the teamwork of the Hypertrophic Cardiomyopathy Clinic, Meijer Heart Center and Transplant Clinic—all helped in her successful recovery.
He remains impressed with Garnett’s willingness to share her story, to help others.
“Fabiola is a great advocate not only for herself, but for others with HCM and congenital heart disease,” Dr. Fermin said. “It is generous of her to share her story so freely.”