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No Breath To Spare

Jane Nelson's chronic breathing disorders might have required a dual lung transplant, but it hasn't stopped her from living her life.

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.

Nelson on stage at a conference for the Pulmonary Fibrosis Foundation.

“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.

After her transplant, Nelson is happy and healthy.

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.

Essays

There’s No Such Thing As A Free Lung

A lung transplant sounds good on paper, but Annie Stein has found it hard to make friends with this new body part living inside of her.

Happy Holidays! Folks is taking a break until January 2nd. In the meantime, enjoy this story from our archives. Originally published on June 20, it is one of our favorite pieces from 2017.


A miracle is not always what it’s cracked up to be.

Don’t get me wrong, I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

Several years ago, I was diagnosed with pulmonary fibrosis: a nasty disease where fibrous scar tissue spreads through the lungs and smothers you to death. Imagine being choked to death from the inside by a writing rat king of your own scars.. Nasty. And there is no cure.

Annie Stein before her transplant.

The disease can progress slowly over the course of several years, like mine did. But when it gets moving? Hold onto your hats.

One day, you’re breathing on your own–admittedly huffing and puffing, as if you’d just ran a race, but still doing fine. Then, the next day, wham! You’re on oxygen, 24/7, and going downhill like a racecar.

By last June, my disease had progressed so quickly that I was given the choice: lung transplant, or die within a year… and a painful year it would be.

With a husband I adore and two daughters in their 20s, for me, that wasn’t much of a choice at all. But then I went to my first appointment.

I believe in miracles. I’ve prayed for them. But there’s always a trade-off.

First of all, it turns out getting a lung transplant is hardly an option for most people. In fact, it’s harder to get on the transplant list than being accepted as a member of the Pebble Beach Golf Club, except unlike Pebble Beach, it has nothing to do with money or who you know. It’s about the strength and health of your heart, your liver, and your kidneys; it’s about your age, your home care situation, and your emotional and mental health. Luckily, I scored well on all the tests–a first for me and tests of pretty much any kind.

Even if you’re a good candidate, though, that first appointment gives you the lowdown on the potentially ugly side of post-operative life. Downer statistics like transplant success rates, life expectancy rates, and the full monty of side effects you can expect from the flotilla of meds you’ll need to be on to keep your new lung functioning.

The big guns in this army are the immunosuppressants. Our immune system’s job is to fight foreign invaders, which includes colds, flus, viruses, and–yes–new body parts, like a foreign lung inserted into your chest cavity. So unless the big guns keep blasting, your immune system will try to get rid of your new lung… even if you don’t have a functioning original lung to do the same work.

Either way, they can create some gnarly side effects. Whether doctors are bound by law to fully disclose them, or my particular doctor was closer to the ultraviolet end of the doomsday spectrum, I’m not sure, but by the time I left the office, I was no longer convinced that “get a new lung” was the only choice available to me, because it came with a very good chance of getting every cancer and infection that came down the pike.

It got me thinking about that husband of mine, those daughters I adore. I would give anything for more time with them, but was it better for them if I went cleanly, sooner rather than later? My husband is still young enough and attractive enough to find an energetic, fun-loving companion, I thought. And my girls… perhaps I’ve given them my best?

Forget Sophie’s Choice. This one was all mine.

Forget Sophie’s Choice. This one was all mine.

It’s been seven months since my transplant, and the fact that I’m sitting here writing this tells you which choice I eventually made. But it wasn’t without cost.

Most people assume that the transplant surgery, and the recovery period of a month or so after, was “IT” with a capital I-T. Get past that and you’re home free: breathing like a champ, climbing stairs, walking the dog, making love, living life as you knew it. Wishful thinking.

Annie, her two daughters, and her husband.

Before I got my transplant, one of the doctors on my team told me–several times, in fact–about a patient of his who was playing tournament tennis eight weeks after his transplant.

God bless him, because eight weeks after my transplant, I was pulling fists full of hair out of my hairbrush with hands that never stopped trembling. My hair was falling out due to just a couple of the two-dozen meds I have to take every morning. As for the shakes, or tremors as they’re called, they came from my daily dose of steroids… steroids which also give me perpetually cracked lips that no amount of Chapstick has cured.

What’s tremors, or cracked lips, or going bald even, compared to dying? Nothing, right? Bupkas!

Same with the insomnia, or the two-month long bouts of flu, that have come from my ‘big gun’ immunosuppressants doing that huge, important job of keeping me from rejecting this gorgeous new lungs. What can I really do about these drugs that are robbing me of my hair, my sleep, and sometimes even my sense of humor except take them and try to be grateful?

That’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it…

So I do. I think about what I’m going to wear to my daughter’s college graduation next year. I look forward to Stand Up Paddle Boarding again. I go wig shopping. It’s all about my “new now”–the trick is to make friends with it. I think that’s the trick for anyone blessed enough to receive a life-saving body part. To make friends with it, and get into gratitude as quickly as you can.

The truth is, there ain’t no such thing as a free lung. Once I understood that, I began to warm up to my new now. I can’t say that we are BFFs yet, but there’s warmth and respect. And maybe, one day, true friendship will grow between us.

Essays

My Airless Nation

They told her she needed a breathing machine. Instead, she got a radiator.

They told her she needed a breathing machine. Instead, she got a radiator.

Kind. The delivery man was preceded by his kindness.

Wheeling the oxygen machines to my house, he rang the doorbell, and as my dogs barked and jumped all over his legs, smiled pleasantly through the whole hair-shedding, slobbering event.

Maybe it was a job requirement, being kind. After all, he brings oxygen to people who need help breathing. If there’s one thing we need as much as oxygen, it’s kindness.

But when I saw what he was delivering, I was not kind.

“You have the wrong order,” I said to the kind man, pointing to the big blue thing he was delivering that looked like the radiator my aunt had in her house circa 1955. “My doctor didn’t order that. And I surely don’t need that tank you have there.”

Kind man: “But you do. This tank is your portable oxygen for when you leave the house”.

My doctor said he’d ordered me a small portable machine. Unobtrusive. Stylish. (“Oh, go on,” I said to that.) Nothing cumbersome.

I trusted him. He’d diagnosed my Pulmonary Fibrosis seven years ago, talking me through my CAT scans, and the periodic episodes that sent me to bed for a few weeks at a time. Nothing I couldn’t handle. But two years ago, my disease got aggressive. Breathing became harder. Then the cough arrived last summer, and so far, shows no sign of leaving.

“It’s time for supplementary oxygen!” said my good doctor, sounding like a favorite uncle. “Don’t make that face, it’ll be fine.”

Except this was not fine.

“Oh no no no,” I said, all in one labored breath.

I wanted that big blue monster and that fucking cylinder tank out of my living room.

“Really,” I insisted. “You have the wrong order. Would you like a glass of water or a cup of coffee?”

Those of us who can’t breathe, we’re all one Airless Nation.

I asked him this, because schlepping to Malibu with the wrong order may have made him thirsty. I wanted to quench his thirst and make him get that shit out of my living room before I started tearing up.

But the kind man refused water or coffee. “You may have been expecting something else, but this is what your insurance approved,” he said. “I’m sorry. I can tell you had something else in mind.”

“My doctor told me he was ordering a small discreet portable machine for me… not these.”” I could feel the wet drops threatening to roll down my cheeks.

“He probably did,” said the kind man, “but insurance never covers those. You’d have to pay for one of those privately.”

“Okay, I will. Can you take these back and bring me one? How much are they, a couple hundred dollars?”

“Ah, afraid not,” said the kind man, looking at me with both amusement at my medical equipment naïveté and a true concern for my emotional well being. “They start at three thousand dollars.”

“Are you sure you don’t want that cup of coffee?” I said, instead of screaming “Fuck!” Which is what I really wanted to do.

In the end, I kept the chunky blue radiator, which fits into my bedroom closet as long as I remove the clothes hamper.

But I sent back the tank. It was a silver cylinder on wheels that I’d seen so many patients carting around the respiratory hospital in Denver. They all looked like they came from the same nation, where the air is thick and brown from cigarette smoke, where the national cuisine is Mickey D’s. They were comfortable dragging around that tank, treating it like a puppy on a leash, in a way that I never could be.

 

The kind man looked more than slightly appalled when I said I would rather die than drag that tank around behind me. But I’m not from that nation. My tribe takes daily beach walks, is lucky to breathe fresh ocean air, and yes, eats kale — that overrated “It” food — with every meal.

I won’t drag that tank around, because my nation is different from their nation. Or so I tell myself. In my heart, I know the truth. The only thing separating me from them is my fear, and it allows me to stay in denial.

Those of us who can’t breathe, we’re all one Airless Nation. It’s just that right now, I am lost, and searching for the state of Grace.

All illustrations by Shannon Wheeler.