Wednesday, January 15, 2025
For nearly 30 years, 58-year-old Karen Rochester, of Baldwin, has been fighting a life-threatening heart condition, diagnosed after the birth of her first son, Jahlani, when she was 28. She developed post-partum cardiomyopathy, a rare form of heart failure triggered by pregnancy.
Eventually, the former nurse said, her condition improved, with the help of medication, and she was under the impression that she had recovered. Last year, however, she had a major scare, beginning with the symptoms of a stomach virus accompanied by intense indigestion and cramping.
While at home in August 2023, Rochester experienced respiratory distress and difficulty standing. She called 911, but when first responders arrived, they told her the symptoms would pass and advised against going to the hospital. But she was convinced that something was wrong, and was eventually taken to Mount Sinai South Nassau.
The cardiologist in the E.R. performed a scan of her heart, which revealed that the right side of the organ wasn’t functioning, and the left side was functioning at just 5 percent. She was on the verge of death.
“It was very dire, because I thought I was going to die,” Rochester recalled. “It was very scary.”
She was transferred to Mount Sinai Hospital, in Manhattan, for more advanced care, and was admitted to the intensive-care unit. Once she was stabilized, the doctors there, including Dr. Johanna Contreras, an advanced heart failure and transplant cardiologist, said she needed a heart transplant.
Rochester was placed on the transplant list on Sept. 4, 2023, but the situation became more worrisome, complicated by the fact that she has rare type O negative blood, like only 7 percent of the U.S. population. On top of that, she tested positive for the coronavirus.
“She was dealing with her condition, and on top of that was dealing with Covid-19,” Contreras said. “Patients with cardiomyopathy that get Covid do poorly. So, really, our first initial thought was very concerned, because she had a very significant, advanced cardiomyopathy.”
Depending on where you live, according to the Cleveland Clinic, cardiomyopathy roughly affects as few as 1 in 20,000 women, but as many as 1 in 100 in countries like Haiti and many in Africa.
Nonetheless, just days after she was placed on the transplant list, she was told that there was a heart for her, and she had the surgery on Sept. 7. But her body struggled to adapt. She had complications, and was eventually intubated — placed on a ventilator after being intubated to assist with breathing.
“Going through what I went through, you don’t feel like you’re going to survive,” Rochester recounted. “I started feeling like, wow, did I make a mistake? because it wasn’t until I had the transplant that I felt sick.”
Rochester said she doesn’t remember much of the four months she spent in the ICU, during which she suffered two strokes.
“Every day was like, I didn’t know if she was going to make it,” Contreras said.
Finally, four months after the transplant, Rochester came home, but was still sick and had a weakened immune system, which preventing her from spending the 2023 holiday season with her family.
Now, 15 months after the procedure, she is fully recovered, and as she reflects on her experience, she is considering becoming an advocate for increased awareness of post-partum cardiomyopathy, a condition that rarely receives attention. She also emphasizes the importance of standing up for yourself when something feels wrong.
Contreras agrees.
“There’s a lot of maternal mortality with African American and Hispanic women who have cardiomyopathy but don’t get the care they actually need,” Contreras said. “People don’t realize how sick these patients are.”
