When Jane Nelson, 30, dates, she can’t meet for sushi. Girls’ nights out no longer entail a bottle of red in a cozy Manhattan wine bar. And – a blessing and a curse – Nelson’s days of navigating New York City’s teeming subway system are over.
A culinary school grad who works in the wine industry, Nelson – the picture of health as a kid – never dreamed a nagging, dry cough would lead to months spent homebound tethered to an oxygen tank, and then a double lung transplant. Now, two years after taking an emergency flight to get her new, donated lungs, Nelson is still figuring out how to navigate one of the world’s largest cities as an immune-compromised woman who wants to date, socialize and move up in her career.
“I’m at that age when everyone’s getting married around me, they’re having babies and they’re buying a house,” Nelson said from her home office in midtown Manhattan. “The biggest part of my life is taking care of my lungs. You feel derailed.”
It’s a feeling Nelson acknowledges, but she doesn’t let it consume her. She won’t feel sorry for herself. Not when she forgoes a movie night at her sister’s in Brooklyn because she can’t spend $60 for cab fare there and back. Not when she feels awkward explaining to acquaintances she can’t shake their hand. And not when she passes a deli craving a crisp apple or thick pastrami sandwich. She won’t touch fresh fruit and veggies and cold cuts; they’re ideal hosts for bacteria and can easily get her sick.
“I never really had the sense of, this is so unfair, why me,” said Nelson, who graduated from the Culinary Institute of America at Greystone in Napa in the midst of her health journey. “I’m lucky my mind didn’t go there. My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?”
“My mind immediately went to, what do I do now, how do I minimize the effect of all this on my normalcy?’
Nelson, who’s always had a passion for cooking, planned to work in the food industry in California after graduation. But then her lungs gave out and she moved back to New York to be closer to family. Accepting their help throughout her surreal journey didn’t come easy. As the fiercely independent middle child in a family of five, she struggled with admitting she needed support. But without it, she said, she wouldn’t be here today.
It was 2011 when Nelson took the train home to upstate New York for Christmas with a chronic cough. At the time, she was working in finance in Manhattan. She spent hours in her parents’ kitchen making a cheesecake, mixing cocktails and coughing. Her parents and siblings were concerned, but her doctor said it was likely allergy-induced asthma.
Back in the city, Nelson started noticing she was out of breath when running. Then, in February, her left lung collapsed. A biopsy revealed no clear cause. Doctors said sometimes lungs collapse in tall, lanky people. They operated on her, attaching the top of her lung to her chest wall, and then sent her on her way.
“I remember asking, ‘Do I need to change anything about my lifestyle?’ and they said ‘No, go on living your life.” So five months later, Nelson picked up and moved to California to pursue her culinary school dreams.
Four months after her move, Nelson was carrying a sheet tray with 20 pounds of Boston butt across the culinary school kitchen when she felt a crackling in her chest. She made her way to urgent care to find out her other lung had collapsed. They performed the same surgery to reattach her lung. This time, they found the cause.
“I was coming out of sedation, and the pulmonologist was standing over me. He said, ‘You have something very serious. You have interstitial lung disease.’”
Nelson’s condition is actually a group of lung diseases that cause progressive damage to lung tissue. In many cases, exposure to toxins like asbestos or coal acts as a trigger. Nelson had neither. After diagnosis, life expectancy is three to five years.
Lying there in recovery, Nelson was silent. She stared up at the doctor. “He went on, and he said, ‘The last time I saw someone with a case this serious, it ended up with a lung transplant.’”
Over the next several months, Nelson continued to deteriorate. It was hard to breathe. But she was determined to graduate. She booked doctor appointments with specialists in San Francisco in the mornings, then drove back to Napa for school in the afternoons and evenings. “Missing class was not an option,” she said.
Four months after graduation, she flew home. “I was trying to face it all myself, but then I recognized I needed support,” Nelson said. “It’s okay to need help.” Her lungs were so weak she couldn’t fly without an oxygen concentrator, which helped her breathe. On the flight, the machine prompted fellow passengers to stare. Her heart raced. What if the machine’s battery died?
“It’s okay to need help.”
In New York, she found a job at a wine company and saw a new doctor. Her lungs got worse. “Everyday activities were getting harder and harder,” she said. “Different pieces of my life were being stripped away.” A year after moving back to New York, Nelson needed extra oxygen while exercising and sleeping. Her sister and brother-in-law pushed her to go to the gym with them; exercising would help her lungs.
Soon, she needed oxygen 24-7 and was tethered to a machine the size of a mini-fridge by a 50-foot tube. “I never left the house,” she said. She was using so much oxygen she couldn’t cook; turning on her gas stove would have been dangerous. By this point, Nelson was on a list for a double lung transplant at Columbia University, but her chances didn’t look good. She was running out of time; her doctor suggested she try another facility. She chose Duke University.
The December morning Nelson, her mother and sister planned to drive to Duke to get Nelson tested and added to their transplant list, she couldn’t breathe. Her left lung had collapsed, again. An emergency flight took her to Duke, which added her to their transplant list on Christmas Eve 2015. Two weeks later, she had two new lungs.
It’s been two years since her surgery, and Nelson no longer needs oxygen. She was promoted and she’s dating again. She’s stopped worrying about potential suitors’ reactions to her condition. She hopes to get married. Having children is another matter.
She doesn’t want to pass the disease on, though it’s unclear whether it’s genetic. She’s also nervous her health could falter again, leaving a child motherless. “That’s something that gnaws at me,” she said.
Since her surgery, she’s organized events to raise money for the Pulmonary Fibrosis Foundation (PF is a type of interstitial lung disease), has spoken about the shortage of organ donors—New York has the third lowest organ donor rate in the country—and is writing a memoir. She’s taken vacations to Paris and Nashville, and she applied to get her MFA. She’s stayed in New York to be close to her family. “I want to get everything out of life that I can,” Nelson said. Her disease took her lungs, but it’s not stopping her from living.