Rebekah’s Second Heart Transplant

When Rebekah’s heart began to fail, her body took on nearly 60 pounds of water weight. She couldn’t walk. Within a day of her arrival, Northwestern Medicine doctors performed a paracentesis procedure to remove all the fluid in 20 minutes. Then, they saved her life.

Rebekah was diagnosed with cardiomyopathy when she was eight months old. She was in and out of hospitals as doctors told her mother it was just a cold. Eventually, someone did an X-ray. It revealed her heart was the size of her entire chest cavity.

“I always had a heart issue in the back of my mind, but because it started when I was so little it was more like a normalcy for me,” Rebekah said, now 32. “Go to the doctor, take medicine every day.”

But her everyday was due for another change. Shortly after graduation, Rebekah began to feel funny. Still, she went to college that autumn. When she found herself unable to walk across campus, Rebekah came home for her first heart transplant.

“That heart was perfect up until it wasn’t anymore,” she said. “One day I just woke up and I couldn’t really breathe.”

Ten years after her first heart transplant, Rebekah went to the hospital – she picked the closest one. The doctors there promptly identified a heart condition in which the vessels in the heart harden, making it difficult for the vital organ to beat regularly. The diagnosis explained her trouble breathing and lying down. They recommended a cardiologist at Northwestern Memorial Hospital.
During her first visit to Northwestern Memorial Hospital, Rebekah learned that, in addition to the condition, her heart was failing and she would need a second transplant. It would be difficult to find a match, the care team told her, because of the amount of antibodies running through her blood from her prior treatments. Her heart was undoubtedly failing, but checking herself in to the hospital would have to be her decision, they could make no promises.

In the meantime, her Northwestern Medicine care team listened to her concerns and spoke to them. They gave her answers and confidence in her care.

“I always felt like they knew what they were doing,” Rebekah remembered. “My nurse practitioner was like a human encyclopedia. It was like Google was inside her brain. Whatever I asked her about, whether it was heart related or not, she had an answer. They made me so comfortable because of their knowledge.”

Almost a year and a half after her first visit, Rebekah made the decision to check herself into Northwestern Memorial Hospital.

She would spend six months waiting for a new heart. But she never felt alone. She became close friends with her nurses and her incredibly close family made for constant support. With two dads, three moms, two sisters and one brother in the area, she had plenty of visitors. “My room was a revolving door,” Rebekah remembered. “I always had someone coming to see me. My two best friends live out of town, and they would arrange to just pop up.”

But a hospital stay isn’t quite every day. During the year and a half before she checked in, her daily life had deteriorated. She would swell, gaining water weight because her heart was not beating strong enough to pump off the fluid. Her belly made it hard to lie down, hard to sleep. To a stranger, she looked six months pregnant. Walking short distances began to feel like a marathon.

With a new heart on the horizon, Rebekah saw how it would impact the little things. Being able to walk from her bedroom to the front door, or eat a full meal. Being able to pick up her five-year-old niece and set her on her lap without the help of others.

“Waking up feeling like I have energy. That is such a big deal,” Rebekah explained. “I know that’s probably really small, but just that.”

Rebekah didn’t know what normal felt like until her first transplant. When her heart began to fail, she saw herself losing everything she was able to do.

“But now it’s back to normal,” Rebekah said. “100 percent.”