Mother awaiting heart transplant shares her story
Mother of two, Zuleyma Santos, works with the American Heart Association to raise awareness of the dangers of heart disease in young adults.
On paper, you’d think that now 37-year-old Zuleyma Santos had it all.
Two new children born in as many years. A retail career she loved. A devoted and loving husband who, despite cancer, was always there for her and a huge, close and supportive family.
This should have been the time of his life.
But within those events came a blockbuster: Santos developed a rare and often fatal heart condition caused by the pregnancy.
That’s why today, she smiles as she adjusts the still-there backpack on her shoulder that holds 10 pounds of batteries, constantly working to keep the device that keeps her heart going while she waits for a heart transplant.
Although there were signs – and a diagnosis – after the birth of her second child in 2019, no one understood the gravity of the situation, and Santos, immersed in the beginning of his life as a parent and concentrating on her husband’s cancer treatments, did not push.
“I think there were symptoms that went unaddressed,” she told Healthline. “I have always been a strong person. You will never hear me say “oh it hurts”. It is not me.
This “go for it” attitude could have proved fatal with the birth of her second child.
But it also propelled her into a space she never thought she would be in – spokesperson for the American Heart Association.
“I felt I needed a way to reach people. To help them know how to speak for themselves.
“I never thought I would have heart failure or my partner would have cancer, at least not when our kids are babies with dirty nappies lying between my hospital bed. But I’m here. And if I can be the voice they hear – knowing 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 baby, something’s wrong with me!” she remembered. “I couldn’t 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 occurs in the last month of pregnancy or the first few months after giving birth.
The baby went home, but Santos remained in the hospital for four more days. She was stabilized and told to rest and see a follow-up cardiologist once home.
She did, but as at every cardiology visit she was told that she had passed all the exams and that she had been given medication 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 although it was hard to lose her job, it was great to be “home and s ‘taking care of the children’ while her husband returned to the hospital to fight his cancer. As stressful as it may seem, she said, she felt good at home and confident in her health.
Then summer came. In July, she was struggling,
“I felt tired, exhausted and couldn’t eat well,” 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’s wreaking havoc. »
Then it got worse. “I couldn’t even lift my daughter’s legs to change a diaper,” she recalls.
She went to the emergency room – in the middle of the pandemic – with swollen legs, nausea and exhaustion. Although she was told of the earlier diagnosis, she said, they sent her home and told her to try eating differently.
Worried, she tried to get in touch with a cardiologist, but the pandemic shutdown also made that difficult. She got an appointment for the end of October and was hoping for the best.
Five days after that ER visit, she suddenly plummeted and realized she was in trouble.
“I told my husband to call an ambulance,” she said.
The last thing she remembers is being intubated. She woke up on November 3 and was told she had stage four heart failure and needed a heart transplant.
“It was very hard to hear,” she said. “I didn’t understand how I, at my age, got to this.”
It’s not an uncommon way for someone his age to think.
“It underscores the importance of recognizing this disease and heart disease in general,” Dr. Eugene DePasquale, a cardiologist at USC’s Keck Medicine, who treats Santos, told Healthline.
“The leading cause of death in the United States [based on data gathered pre-COVID-19] is heart disease,” he said. But when people look [based on their symptoms] they search for ‘cancer,’” he said.
He said the data suggests that less than three per cent of people looking for symptoms search online for heart disease.
The media, he said, reports on suicide, terrorist deaths and cancer, but not so much on heart disease.
Also, he said, younger heart patients tend to have different symptoms that are more focused on the gastrointestinal tract.
“Younger patients, in particular, can be missed,” he said of the cardiac diagnosis. “Not only by the patient but by the [medical experts] as well.
That’s why he and his team are thrilled to have her share her story while working on a heart transplant.
“She’s a special woman,” he said. “We are very grateful to him. She’s been through a lot, but she still does things like that. She is part of our family and vice versa.
Santos went home with this backpack charging her HeartMate pump, which will do the work of a heart until she receives a transplant.
DePasquale said because Santos developed antibodies during that second pregnancy that spurred heart disease, making her pool of donor hearts very small. The Friday before Mother’s Day, they were supposed to start working on getting those antibodies out of her.
She came home hopeful about it and grateful to be alive, as well as ready to take over from her ailing husband, who had taken care of the children with the help of his family during his recovery. to the hospital.
“I could feel he was waiting for me – clinging to his health to take care of things until I could,” she said.
She was right. She arrived home on December 29. On January 16, they threw a happy third birthday party for their son.
A week later, her husband went to the hospital. On February 27, he was at home in hospice care where he died shortly after.
Still, Santos is grateful and positive.
‘He gave me the strength to do it,’ she said of raising two children as a widow, battling heart disease while waiting for a transplant and being a doorway. -word of heart health.
“He did it for me, and now it’s my turn to do it for him. I’m going to support this family, keep these children happy.
She works hard with her doctors to get the heart transplant and speaks out.
Says DePasquale, she makes a difference in more ways than she realizes.
“We are very grateful to him,” he said. “She helps put this into perspective and encourages others to be proactive and fight for the symptoms to be recognized.”
It also, he said, gave visibility into how heart pumps work. The HeartMate pump has been used by people as high profile as former Vice President Dick Cheney, he said, but the powerful image of an ordinary woman living with someone could help many.
“It’s not as scary as some people think,” he said. “She can help people to accept that better.”
Santos looks to the future and a new heart with hope.
Doctors told her she probably had signs of heart disease after the birth of her first child. And while that might have meant avoiding some of the extreme diseases, it would have changed something else as well.
“They would have told me not to have any more children,” she said. “I might not have had my daughter. And you know, I wouldn’t change that for the world.