- Zuleyma Santos was diagnosed with peripartum cardiomyopathy 2 days after the birth of her daughter.
- The condition enlarges and weakens the heart, limiting the amount of blood and oxygen it can pump.
- Santos is awaiting a heart transplant and is speaking out to raise awareness of the disease.
Zuleyma Santos was breastfeeding her two-day-old child in hospital when she felt like she couldn’t breathe. So far all was well.
“I was able to carry the pregnancy, I had no symptoms, no swollen feet, I was able to sleep,” Santos, who was 35 at the time, told Insider.
But his shortness of breath was quickly diagnosed as peripartum cardiomyopathyWhere
at the time of childbirth. Santos, who also has a 4-year-old child and no family history of heart problems, had never heard of the term.
Now, about two and a half years, numerous hospitalizations and two surgeries later, Santos is awaiting a heart transplant. She shares her story as a volunteer for the American Heart Association’s Go Red For Women Campaign to raise awareness of the disease and encourage women to take responsibility for themselves.
“When we’re pregnant, we go to the doctor and all they want to know is how the fetus is doing,” said Santos, who lives in Los Angeles. “They don’t focus on us.”
Santos felt healthy for months after giving birth
Santos remained in the hospital for a few days after the birth of her daughter and was discharged with medication for heart function and fluid retention, and instructions to follow her cardiologist.
After about four months, Santos felt so well that she dropped her medication and her appointments. “I was like, ‘I’m just going to keep living my life,'” she said, including returning to the retail job she loves. “I thought I was fine, but it turns out I obviously wasn’t.”
In the summer of 2020, Santos was battling nausea and fatigue, but convinced herself it was the heat of the valley. By fall, she had been in and out of the emergency room with swollen feet and exhaustion. Then in late October, her late husband, Christopher Valdez, called an ambulance because Santos couldn’t breathe.
There she was intubated with stage 4 heart failure. She woke up the following week to find that she had undergone surgery to have a heart pump called Impella implanted, and would need a transplant.
“I was in shock,” Santos said. “All I thought about was, what is my mom going to do? What is my husband going to do? What are my kids going to do? I just couldn’t believe that it was me.”
“Because I didn’t take care of myself” by stopping his medication and doctor visits, she added, “now I need a heart transplant.”
Santos and her husband, who had cancer, alternated the roles of patient and caregiver
After two and a half months in the hospital, doctors replaced Santos’ Impella with a left ventricular assist device (LVAD). An LVAD is considered a transplant bridge and works with 10 pounds of cords and batteries that Santos carries in a purse. “I try to make it cute,” she says.
Equipped with the device, Santos was able to return home to take care of the children of Valdez, whose cancer had recurred. After helping Santos gain enough strength to lift their children and drive, Valdez checked himself into the hospital. He died in March 2021.
“I didn’t know people went through that at our age,” Santos said. You think about “heart failure and cancer when you’re in your 60s, where your adult children come to see you,” she added. “But that was not our case.”
In the coming months, Santos will undergo treatments to reduce the antibodies that ccould reject a foreign organ. Then she will go from a status 4 to a status 2 – absolute priority, with status 1 – on the waiting list for a heart transplant.
But for now, she is focusing on today. “I’m happy everyday, I live in the moment, I live for my kids, for myself,” Santos said. “I really think being happy, just being positive day to day, can make a big difference.”
Peripartum cardiomyopathy limits blood flow from the heart
Peripartum cardiomyopathy, which can occur before or within months of childbirth, is rare, affecting between 1,000 and 1,300 women in the United States each year. American Heart Association says.
During CMPP, the heart’s chambers widen and the muscle expands, reducing the amount of blood – and therefore oxygen – that the left ventricle can pump through the body.
It is not known what causes PPCM, but people who are obese, with a history of
and smoking or alcohol abuse are among those most at risk.
Most patients recover some or all of their heart function, depending on the Cleveland Clinic, and treatments range from temporary medications to heart transplants. “Heart disease and stroke kill 1 in 3 women,” Santos said. “I’m just happy to be here to tell my story, and I want to keep doing the same so that number can change in the future.”