What's the easiest way to save a life? Pledge to . You could be an angel to someone like Jane Nelson, who needed a double lung transplant at only 26.
It started with the kind of cough that sounds like you're clearing your throat. "Just cough up whatever's in there," my family would say, annoyed by the noise, that spring of 2011. But it was a dry cough and, according to my doctor, nothing more than allergies or seasonal asthma. Then the cough got worse, and one morning a year later, I woke up with intense pain in my chest. The urgent-care doctor said it was probably pneumonia and if I wanted to be extra careful, I should get an X-ray. I said yes.
Minutes later he rushed back into the room. "The good news is, you don't have pneumonia," he said. "The bad news is, your left lung is 95% collapsed and is balled up like a fist inside your chest." I was rushed to the hospital. Sometimes a person's lung can collapse for no obvious reason, and they didn't see a reason in my case. I had to have surgery to reinflate it.
Then, months later, my right lung collapsed. This time I had a biopsy along with the surgery. When I woke up, one of the doctors told me I had a form of interstitial lung disease, and it turned out to be pulmonary fibrosis, a progressive scarring that leaves people increasingly out of breath and usually kills them within just a few years. "The last time I saw lungs like this, it ended up in a transplant," the doctor told me.
I barely heard his words. I just kept thinking, No. No. No.
By then, I was 26 and living in San Francisco. I had moved there to go to culinary school and be close to my boyfriend, whom I'd been dating on and off for six years. But now I was too sick to stay, and in the summer of 2013, I moved back to New York City to be near my family. By October 2014, I was on the waiting list for new lungs. I had read about organ donation, of course, but who ever thinks it will affect him or her personally? I never had.
Every month I went for a checkup at the New York-Presbyterian Hospital/Columbia University Medical Center for Advanced Lung Disease and Transplantation. The waiting room there can be upsetting: Patients are being evaluated for transplant, are waiting for lungs or have had a transplant and are following up, sometimes just a few months after surgery. I was sick but still functional, walking and breathing on my own, but there were people in wheelchairs, hooked up to oxygen tanks. One day I overheard a man who had just learned that his wife needed a transplant say, "I don't know if I can do this." It made me wonder, Am I not taking this seriously enough? Should I be as scared as he is?
I started to realize the answer was yes. It wasn't a matter of when I'd get new lungs, but if I would get them. With each passing week, I was getting more breathless, more inactive and sedentary. Even sneezing and yawning were painful. Still, I didn't look that sick, and I sensed that people in the waiting room thought I didn't need a transplant. That's what happens in the waiting room: There's a visceral sense of competitiveness about who is sickest and who needs lungs most, because so few become available.
Glued to My Phone
Normal daily activities like walking became harder and harder. By August 2014, I had started breathing oxygen through a nasal cannula when I exerted myself and while I slept. The tank was small but noisy, and I was very self-conscious about it. I didn't want my disease to define me.
I worked for a wine retailer, and my bosses knew I was sick, but I hid it from everyone else. I arrived early so I could walk up the flight of stairs and rest along the way without anyone seeing me. I'd then get to my desk, plug in the tank and inhale some oxygen before hiding the tank in my bag under the desk. I brought lunch from home so I never had to leave in the middle of the day. And by 5 p.m. I was so tired from not using the oxygen that I never went out with my colleagues. Exercise was part of my lung therapy, but even riding the stationary bike at the gym with my tank made me self-conscious; I always rode the bike farthest in the back.
This sufficed until I got so sick that I needed continuous oxygen (even in the shower) and had to work from home. Luckily, I lived near my sister and her husband, and they were constantly checking in on me and coming to help me. The little oxygen tank wasn't enough anymore — I was using an oxygen concentrator, which plugged into the wall and was the size of a mini fridge.
Your odds of getting an organ any time soon can go up and down, depending on lots of variables — including how urgent your need is relative to other people's. It's scary. New York State has one of the lowest donor sign-up rates in the U.S. That's partly because a lot of people in Manhattan don't have driver's licenses, and the DMV is the largest source of donor registrations.
I had my phone with me at all times, in case I got The Call. If I missed it — if I didn't have service or was in the bathroom and didn't get back to the doctor soon enough — the lungs would go to someone else. I was obsessed, always checking my phone, leaving the ringer on as loud as it could go. I've heard most people receive the call in the middle of the night, as that's when a lot of car accidents happen. When called, you must get to the hospital ASAP because, body to body, lungs are usable only for four to six hours.
As the months wore on, I grew more and more isolated. My nine-year relationship had disappeared into the ether, and my mom, who lived two hours away, was my primary caregiver. I'd always been such an active person, the one who woke up early on Saturdays to cook everyone pancakes. Now my friends were getting married, earning job promotions and buying houses, but here I was just trying to breathe. And the constant flow of oxygen and my gas stove were a dangerous combination, so I had to give up cooking, which had been my therapy.
The hardest part was adjusting my expectations. I was such an ambitious person that it was hard sometimes not to feel cheated. Once I rode past a flower market in a cab and saw couples holding hands. How can I expect someone to be with me, knowing that my life span is limited? I thought. Or that I'm always going to appointments, or in the hospital?
I told myself, You can't be emotional about this. You have to power through it. And I did. But I had some terrifying days when I couldn't walk the 12 feet between my bed and my desk without resting. Breathing was so basic that I didn't even think about it until I couldn't do it anymore.
My Shrinking World
Over the next year, I became a complete shut-in, sometimes not leaving my apartment for two weeks at a time — what if my oxygen ran out? But I just couldn't miss the wedding of my first friend from college. I'd been there when she'd met her fiancé, and now I was a bridesmaid. My sister and her husband knew how important it was to me and took me to the ceremony with all my tanks. Everyone was so helpful; my friends' husbands brought me club sodas all night. I didn't want to be needing things, but I needed help. I hated not being whole.
In fall 2015, my doctor told me I needed to go to a transplant center in another region where I was more likely to get a set of lungs. (Because lungs have such a short life span, there is no time for major travel. Other organs survive longer: a kidney remains viable for 24 to 36 hours, a pancreas for 12 to 18 hours and a liver for eight to 12 hours).
Knowing that someone had to die so I could live was a crisis of the mind. I was desperate. I was hopeful. I panicked when I got short of breath, which made breathing harder. My mind sped to the worst place: I'm on the verge of dying! This is going to be my last breath. When I thought about new lungs, all I could think was, I need them. I need them. I need them.
I knew I couldn't live like this much longer, so I decided to register at the transplant center at Duke University Medical Center in Durham, North Carolina, where my chance of getting lungs was much better. But the day my mom, my sister and I were set to drive south in December 2015, while I was in the shower, I got very short of breath. I stepped out and sat on the toilet, naked and dripping. My sister was nearby, and I asked her for my oxygen mask. Somehow I made it to the bed. I was gasping for air. I told my mother, "I need 911." My left lung had collapsed again.
The ambulance rushed me to a hospital, and I skyrocketed up the waiting list. When a bed became free at Duke, I took a medical plane from New York to Durham that flew at sea level so my lung wouldn't collapse again.
Thankful Beyond Words
Every time I saw, through my hospital room window, a medical helicopter landing on the roof, I wondered, Did something bad happen to someone? I didn't wish for that, but if it was true, I always hoped my lungs had come. On January 12, 2016, amazingly, I got my call.
Recovering from my double lung transplant was grueling; I had a lot of complications. But now, two years later, I can't believe my life. Before my transplant, I wrote a list of things I'd do if I got my lungs. The most exciting one was going to Paris, and I finally went last fall. I often walk instead of taking cabs. I'm even running a little again. I'm dating someone who saw me at my worst in the hospital — in an ugly gown with a bedpan at my side — but still wants to be with me. And two Thanksgivings ago, my sisters and I cooked the meal. Think about that. Three years ago at Thanksgiving, I was dying.
Obviously, things aren't perfect. When I was young, I wanted a family — now it's too risky. Lungs are the most delicate of transplanted organs, in part because they're at risk of infection from being exposed to outside air. I have only about a 33% chance of living another 10 years. I'd feel guilty leaving a child motherless at a very young age and causing that kind of pain. Accepting that my life expectancy is limited allows me to live in the moment and enjoy the days I have.
I don't know where the lungs inside me came from. I don't know if they belonged to a man or a woman, how old the person was or how he or she died. But I do know that I want to do justice to his or her life, to honor that person, which pushes me on the days I don't feel so great. I tried many times to write to thank my donor's family and finally was able to. It's so complicated. I expressed my gratitude and also my condolences, and I let them know I wasn't wasting their loved one's organs. I wanted them to know that because of them, I can breathe.
Visit to sign up to be a donor.
This story originally appeared in the February 2018 issue of GolfHr.