“I’ve been blessed with really great doctors. We would always talk about whatever needed to be done. I’m part of the team. I think that’s a really big factor at Columbia. They make you part of the team.”
When Emily Gorsky, 26, was five-months old, her mother, a registered nurse, was the first person to pick up the clues that Emily might have cystic fibrosis. “It wasn’t a typical diagnosis where it presented through my chest; it actually presented intestinally.” Her mother was also the one who found NewYork-Presbyterian for Emily’s care when her condition worsened years later.
“When I was in high school the CF really progressed. I used to dance a lot and had to stop,” notes Emily. “I just kept getting sick. It wasn’t just the CF; something else was wrong, but we couldn’t put our fingers on it. I had lots of tests and loads of antibiotics, but unfortunately, we didn’t find the remedy for my problem. So, my mom started to do some research and she came up with NewYork-Presbyterian. And there I met the wonderful Dr. Emily DiMango. That was a huge step in saving my life.”
Over the next few years, Dr. DiMango, a pulmonologist and Director of the Adult Cystic Fibrosis Program at NewYork-Presbyterian/Columbia, managed Emily’s care. When Emily’s lung function dipped below 30 percent, her physicians began to present the idea of lung transplant. “From there we started the process with evaluation and signing consent forms,” says Emily. “I really didn’t think at that point I would be getting a transplant. We had a treadmill in our family room, and my dad would bring down multiple oxygen tanks. I would just walk and walk on the treadmill. It was a snail’s pace, but I’d do it for hours. I’d go upstairs and shower, and every single time I ended up coughing up blood. I still had the mindset that I wouldn’t need a transplant. I would tell myself, ‘I can work my lungs back out.’”
But Emily’s cystic fibrosis was progressing inexorably. Housebound, unable to climb stairs, she became limited to a single floor. The inevitable return to NewYork-Presbyterian came with the discovery of a hemorrhage. Though briefly controlled in the Hospital’s critical care unit, life support would be needed.
Emily recounts seeing a girl, close to her age, walking down the hallway hooked up to a complex set of tubes and wires. It was an ECMO (extracorporeal membrane oxygenation) machine, an innovative technology, found in few hospitals, which provides support for the lungs and the heart when one or both are unable to carry out their vital life-sustaining functions. “I never thought that would be in my future,” Emily says. A nurse slowly introduced Emily to how the ECMO system worked as her resting heart rate reached 170 beats per minute and her blood oxygen dangerously low.
Emily needed, in addition to ECMO, a tracheotomy and a respirator. Long before, Emily told her mother she never wanted a tracheotomy. “That was my biggest fear. I was open to ECMO, but the trach really scared me.” Emily had to decide whether to consent. “If we waited more than 10 minutes, I would have permanent brain damage.” Emily recalls. “So, apparently I consented!”
A few days after ECMO placement, sufficiently stable to test lung function, Emily’s lungs were performing at less than seven percent of capacity. “They deemed that my lungs had totally failed,” Emily says. This placed her first on the list for a bilateral lung transplant. Because of her many complications, Emily’s doctors estimated that they had two weeks to accomplish the transplant. She weighed 70 pounds.
“That’s why ECMO was so important,” she says. “The trach and the respirator were important because they helped in other ways. But without ECMO I wouldn’t have made it to transplant.”
“If my doctors told me to do something, I would do it,” notes Emily. “I trust my doctors; I’ve been blessed with really great doctors. We would always talk about whatever needed to be done. I’m part of the team. I think that’s a really big factor at Columbia. They make you part of the team.”
After a long post-surgical rehabilitation, focused on getting Emily’s strength back, she returned to dancing and to the beach. “I was under the waves thinking, ‘I’m holding my breath this entire time. When I come back up, I’m going to be able to breathe.”