Dilated Cardiomyopathy, Heart Failure, Heart Transplant, Heart Transplant

Alin Heart Transplant Story
“On December 21, 2018, I almost died.” That’s the first line of Alin Gragossian’s blog, A Change of Heart.

Alin was a 30-year-old emergency medicine resident who, in the weeks leading up to that day, had been feeling a little rundown. As a resident working long hours, it didn’t seem too abnormal. The persistent cough she had developed was annoying but not unbearable.

Even when one of her attending physicians noticed she was short of breath from talking, Alin shrugged it off. “I went for a run just last week. How bad could it be?” she thought. But over the next couple of days, it became harder for her to ignore that she was having trouble breathing.

When her boyfriend who hadn’t seen her for a few months confessed that she looked sick, they headed to her ER for a chest x-ray.

“My heart looked big. My heart rate was in the 140s, and I wasn’t breathing well,” Alin says. “They thought it could be pneumonia.”

Still, Alin’s focus was on her shift the next day. If she could just get some antibiotics, she thought, she should be able to salvage some sleep and make it through another day. Instead, one of her attendings insisted she stay overnight for observation.

Which proved to be a lifesaving measure.

That night, Alin went into heart failure. She doesn’t remember much after the rapid response team arrived at her bedside. She was intubated and put on a ventilator. And then she was put into a medically induced coma in an effort to stabilize her and buy her doctors some time to figure what was going on.

Racing against a deteriorating heart

Alin Pre - Transplant

Over the next 48 hours, her doctors zeroed in on her heart, but they still weren’t sure what was causing her condition. She was taken to the catheterization lab, her heart failing from minute to minute. She was put on medications just to keep it pumping.

Alin was ultimately diagnosed with dilated cardiomyopathy, a condition in which the heart chambers dilate or enlarged, preventing the heart from pumping blood as well as it normally would. If it goes on long enough, it can lead to heart failure, as it did with Alin.

“My dad has dilated cardiomyopathy, but his isn’t as severe as mine,” Alin says. “And his father died in his late-thirties, early-forties from a heart condition, but we’d never put it all together before.”

The cause of dilated cardiomyopathy isn’t generally known, but it’s estimated that up to a third of cases are inherited from parents.

With the diagnosis, Alin was transferred to the Hospital of the University of Pennsylvania. “I knew where it was headed at that point: heart transplant,” she says.

On January 15, 2019, 11 days after Alin was placed on the heart transplant waiting list, she was, as she writes on her blog, “reborn with a new heart, all thanks to a selfless organ donor who was likely from around the area and happened to have a matching blood type.”

Pavan Atluri, MD, director of Penn Medicine’s Cardiac Transplantation and Mechanical Circulatory Support Program, performed the surgery.

Making sense of a near-death experience

Alin started her blog seven days after her transplant, while she was still in the intensive care unit. She vowed to use it as a space to “advocate for organ donation, research, and charities.” (Within the first two months, she had already raised several thousand dollars for a national charity and she’d begun working with another, Philadelphia-based one.) The blog also helped stave off boredom— Alin is not someone who does well with sitting still—and served as an outlet for her thoughts.

Alin needed to explain the thoughts racing through her mind. After all, she was suddenly forced to confront the possibility of her death at the age of 30.

“It was very, very, very scary,” she says. “But I had a lot of faith in the system. I knew that my doctors and nurses would take care of me, and that ultimately made me feel better.”

She was also just beginning to process how she was going to proceed with the rest of her life.

“You see, there are several ways to interpret these ‘inconvenient’ life events (let’s call these ILEs),” Alin wrote in her first blog post. “You can genuinely see them as setbacks and let them take over your thoughts.

You can blame yourself or others (or even a higher being) and dwell on the reasons why such ILE happened to good, ol’ you.

“Me? I gracefully embraced my ILE. I am continuing to learn from it every day, even in my hospital room on Post-Op Day 7.”

Anticipating the next chapter

Alin was discharged from the hospital nine days after her transplant and was up and doing things for herself after a couple of weeks. By March, she had already been easing back into jogging—“slowly,” she qualifies—for a month. And she was itching to get back to work.

Before all this happened, Alin was preparing to move to New York to begin a fellowship in critical care. That’s been postponed for at least a year. If her follow-up care under Rhondalyn C. McLean, MD, MHS, associate medical director of the Penn Medicine Heart Transplant Program, continues to progress as well, and if her next couple of routine biopsies remain clear, Alin will be allowed to finish her residency in the coming months.

Until then, she’s continuing to process the whirlwind that was last winter.

“Even before all this happened, I was someone who’d try to take something and learn from it. It’s changed me in a lot of ways,” Alin says. “It’s got me thinking about taking full advantage of my time and making sure that I’m doing what I want to be doing. But I think it’s also going to make me a different clinician. I do think it’ll help me better empathize with my patients.”

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