Health & Fitness

Mother Waiting for a Heart Transplant Tells Her Story

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After giving birth to her second child, Zuleyma Santos was diagnosed with a rare form of heart failure and placed on the waitlist for a heart transplant. Photography courtesy of Padilla Co

Mother of two, Zuleyma Santos, is working with the American Heart Association to raise awareness about the dangers of heart disease in younger adults.

On paper, you’d think Zuleyma Santos, now age 37, had it all.

Two new children born in as many years. A career in retail she loved. A dedicated and loving husband who despite having cancer was always there for her and a huge, nearby, and supportive family.

It should have been the time of her life.

But within those happenings came a blockbuster: Santos developed a rare and often deadly heart ailment caused by pregnancy.

That’s why today she smiles as she adjusts the always-there backpack on her shoulder that holds 10 pounds of batteries, constantly at work to keep the device that keeps her heart pumping in action as she awaits a heart transplant.

While there were signs — and a diagnosis — after her second child was born in 2019, no one picked up on the seriousness of the situation, and Santos, immersed in beginning her life as a parent as well as focusing on her husband’s cancer treatments, didn’t push.

“I feel there were symptoms that were unanswered,” she told Healthline. “I’ve always been a strong individual. You’ll never hear me say ‘oh I’m hurting.’ That’s just not me.

That “get to it” attitude could have proven fatal with the birth of her second child.

But it’s also launched her into a space she never thought she’d be in — spokesperson for the American Heart Association.

“I felt I needed a way to reach people. To help them know to speak up for themselves.”

“I never thought I’d have heart failure, or my partner would have cancer, at least not when our kids are babies with dirty diapers running around between my hospital bed. But here I am. And if I can be the voice they hear — to know there are resources out there — then so be it.”

Santos was holding her then two-day-old baby in the hospital when suddenly, she could barely breathe.

“I called the nurse and said ‘hold the baby, something’s wrong with me!” she remembered. “I could not breathe and thought I was losing my life.”

She was examined, tested, and then diagnosed. It was peripartum cardiomyopathy, they told her, a form of heart failure that happens during the last month of pregnancy or in the first few months postpartum.

The baby went home, but Santos stayed in the hospital for four more days. She was stabilized and told to rest and see a cardiologist as a follow-up once home.

She did, but since at each cardiology visit they told her she passed all the exams and put her on meds that stabilized her, she made a decision.

“It was time to get back to normal life,” she said. “I was like ‘I feel good. Why are you telling me I have this?’ So I went back to my life: working, taking care of the kids, and taking care of my husband.”

No one blinked or tried to steer her in another direction, she said.

In March, the pandemic shutdown hit, a “blessing,” she said because while it was hard to lose her job, it was great to “be home and take care of the kids” while her husband went back to the hospital to battle his cancer. As stressful as it all sounds, she said, she felt good being home and felt confident in her health.

Then summer came. By July, she was struggling,

“I was feeling fatigued, worn down and I could not eat right,” she said.

But the postpartum heart diagnosis didn’t cross her mind.

“I didn’t really think it was my body,” she said. “I thought it was the summer heat. And you know, taking care of two babies and a husband battling cancer. It takes its toll.”

Then, it got worse. “I couldn’t even lift my daughter’s legs to change a diaper,” she remembered.

She went to the ER — mid pandemic — with swollen legs, nausea, and exhaustion. Despite being told of the earlier diagnosis, she said, they sent her home and told her to try eating differently.

Concerned, she tried to get in with a cardiologist but the pandemic shutdown made that challenging too. She secured an appointment for late October and hoped for the best.

Five days after that ER visit, she suddenly spiraled downward and realized she was in trouble.

“I told my husband to call an ambulance,” she said.

The last thing she recalls is being intubated. She woke up on Nov. 3 and was told she was in stage four heart failure and would need a heart transplant.

“It was very hard to hear,” she said. “I didn’t understand how me — at my age — got to this point.”

That’s not an uncommon way for someone her age to think.

“This highlights the importance of recognizing this condition and heart conditions overall,” Dr. Eugene DePasquale, a cardiologist with Keck Medicine of USC, who is treating Santos, told Healthline.

“The number one cause of death in the United States [based on data gathered pre-COVID-19] is heart disease,” he said. “But when people search [based on their symptoms] they search ‘cancer’,” he said.

He said data suggests that less than three percent of people who are searching for symptoms online search about heart disease.

The media, he said, pushes information about suicide, terrorist deaths, and cancer, but not as much about heart disease.

In addition, he said, younger heart patients tend to present with different symptoms, more focused on the GI Tract.

“Young patients, in particular, may be missed,” he said of heart diagnosis. “Not only by the patient but by the [medical experts] as well.

That’s why he and his team are thrilled she’s sharing her story while working toward a heart transplant.

“She’s a special woman,” he said. “We’re very grateful for her. She’s been through quite a lot, but she’s still doing things like this. She’s a part of our family and vice versa.”

Santos headed home with that backpack charging her HeartMate Pump, which will do the work of a heart until she gets a transplant.

DePasquale said because Santos developed antibodies during that second pregnancy that spurred on the heart disease, making her pool of donor hearts very small. The Friday before Mother’s Day, they were to begin working to remove those antibodies from her.

She came home hopeful about that and thankful to be alive, as well as ready to take back over for her ailing husband, who had cared for the kids with family help while she recovered in the hospital.

“I could sense he was on hold for me — holding on to his health to take care of things until I could,” she said.

She was right. She arrived home on Dec. 29. On Jan. 16 they hosted a joyful third birthday party for their son.

A week later her husband checked himself into a hospital. By Feb, 27 he was home in hospice care where he passed away soon after.

Still, Santos is thankful and positive.

“He gave me the strength to do this,” she said of raising two children as a widow, battling heart disease while waiting for a transplant, and being a spokesperson for heart health.

“He did it for me, and now it’s my turn to do it for him. I’m going to keep this family going, keep these kids happy.”

She’s working hard with her doctors to get to the heart transplant, and speaking out.

Said DePasquale, she’s making a difference in more ways than she may even know.

“We’re so grateful to her,” he said. “She helps put this into perspective and encourages others to be proactive and fight to have symptoms recognized.”

She also, he said, gives visibility to how well heart pumps can work. The HeartMate Pump has been used by folks as well-known as former Vice President Dick Cheney, he said, but the power image of an everyday woman living with one could help many.

“It’s not as scary as some people think,” he said. “She may help people become more accepting of that.”

Santos looks to the future and a new heart with hope.

Doctors told her she probably had signs of heart disease after her first child was born. And while perhaps that could have meant avoiding some of the extreme illnesses, it also would have changed something else.

“They would have told me to not have any more children,” she said. “I would have maybe not had my daughter. And you know, I wouldn’t change that for the world.”

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