RockBottom_Lungs

Even After Two Lung Transplants, I’m Still Waiting to Die

‘An ambulance came, I went to the ER, and then I woke up from a coma five months later. It was probably the lowest moment of my life’

Every person has a lowest point: A moment in their life where, whatever the cause, it seems impossible that things could get any worse. These intensely personal experiences come in many different forms, but they all share one thing in common: The question of, how will I ever dig my way out? In this series, we’ll be talking to the people who somehow managed to pull themselves from the deepest depths and once again find steady ground.

Name: Christopher Nalley
Age: 39
City: Richmond, Virginia
Rock-Bottom Moment: Being on the organ transplant waiting list for lung transplants — twice 

Picked Last in Gym Class

I was born with cystic fibrosis. I tell people all the time I was the cliché kid picked last in gym class. But I was literally the kid who came across the finish line last, because I couldn’t breathe. I was always wheezing. As a kid, other kids would always ask me if I was sick, because with cystic fibrosis it’s like constantly having a lung infection.

The only way to treat it as a kid was airway clearance, where they do percussion clapping on your back and your chest to try to force that stuff loose so you can cough it up. As I got older, in my teens and 20s, they had technology like this device called the vest, that reverberates air inside and out of the vest so it kind of shakes you a bit. And obviously antibiotics and breathing treatments like albuterol.

When I was 25, though, I got pneumonia really bad. I went to the emergency room and the doctor was like, “We’re gonna admit you.” But I was like, “I can’t — I gotta work tomorrow.” He basically told me, “Okay, I can send you home with some antibiotics, but you’ll be back here at midnight. That’s how sick you are.” 

Still, I blew it off. 

Around two in the morning, while my roommate and I were both sleeping in the living room in front of the television, I had to throw a shoe at him to wake him up because I couldn’t breathe. An ambulance came, I went to the ER, and I woke up from a coma five months later, hooked up to a ventilator and feeding tube. It was probably the lowest part of my life.

I became addicted to morphine — I’d stare at a clock all day because I couldn’t wait till my next dose: It was very calming, and it relaxed me. I went to a ventilator rehab place after I got out of the hospital and had to learn how to walk, talk and other basic motor skills. Ever seen Kill Bill? She wakes up from a coma and her legs didn’t work. That’s kind of how mine were, they were just like really heavy pieces of weight.

The Waiting List

At the University of Virginia, the closest trauma center to where I lived, they told me I was only working on 17 percent lung function and that the only way I’d get better is if I had a double lung transplant. But before they could put me on a list, they had to get me infection-free and healthy, which is pretty complicated. I was on all kinds of antibiotics, such as rifampin, which makes your sweat and urine bright orange — like, orange soda orange. They told me not to wear white T-shirts unless I wanted an orange sweat stain. They even told me if I wore contacts, it would stain the contacts orange. 

They test everything — from your bone density, to psychological testing because they want to make sure you’re able to remember to take the rejection meds that you have to take every day. Then I had to put on some weight for the surgery. Once that was accomplished I was on the UNOS [United Network for Organ Sharing] waiting list.

The month I got listed was the same month they changed everything. It used to be first come, first served. But they changed it based on need, so if you had 50 percent lung function and I had 17, I’d obviously get a transplant before you, all other things being equal. I’m also 6-foot-1, so they had to find someone that’s tall too, because you couldn’t put a 5-foot-5 person’s lungs inside of me.

You go into a registry, then if somebody passes away at a hospital, an organ procurement company is contacted, they call UNOS, and then there’s an algorithm that goes into finding the perfect match. It was scary at first to be told I needed a transplant, but after the coma, life kind of got put in perspective for me.

At that time, I lived with my parents because I was on 24/7 oxygen and couldn’t really work or fend for myself, which is somewhat humbling for a 26-year-old. I was the guy that my friends took out to bars that was carrying an oxygen tank around. It was a little awkward, but I’m also pretty outgoing, so people would ask me about it. The most common question was, “Oh, you smoke too much, right? You did this to yourself.” I was like, “No, I was gifted this by genetics.” But my social life suffered — I didn’t really have relationships with females. Nobody wanted to get into a relationship with someone who’s gonna pass away.

During that time I got mentally prepared to die. It’s cliché, but I was very carpe diem. I lived for each day. I’d go to the beach. I’d go to bars. I’d wake up with hangovers even though maybe I wasn’t supposed to be drinking, but I didn’t want to limit my final time here to just sitting in a room staring at a television. When I first got out of the hospital, I couldn’t even walk down the hall to go to the bathroom without feeling like I ran a marathon. Then at some point I was on so much oxygen it was burning the inside of my nose, and I’d get bloody noses all the time, which is awkward being out in public and getting a random nosebleed.

The most difficult part of being on the waiting list? 

It’s gonna sound like a minor irritant, but your entire life is on hold. I couldn’t find a job because, as a retail manager before, I could no longer be on my feet and couldn’t do the job I used to do. Everything’s just on hold, your life’s on pause. Some people would say, “Oh cool, you’ve got a vacation.” But I’m a very driven person so I wanted to do stuff. I couldn’t fly or go on trips. I was on liquid oxygen at my parents’ house: This giant tank that looks like two kegs stacked on top of each other. I had a really long oxygen hose so I could go all around the house. It felt, though, like I was on a leash all the time. Not to mention, if I left the house, it had to be in four- to five-hour increments because I had to have enough oxygen with me. It was almost like being in space: You can only leave the space station with a certain amount of oxygen, then you gotta come back. 

Plus, you never know where you are on the list, so it’s not like I was told on Tuesday I was going to get a transplant so I could plan something for Wednesday or Thursday. For me it was like, I can’t plan the rest of my life for months and months. And even if I could schedule an oxygen company to drop some oxygen off at a hotel, I had to stay within a certain radius of my hospital because if I got a call, I had to be able to get to the hospital on time.

The First Transplant

I got the phone call at 6 a.m. I was super pumped. So much so that I cursed at the doctor. They asked, “Are you ready to get a transplant?” I told them, “Hell yeah.” My parents were still putting their shoes on, and I was already in the car.

They rolled me into pre-op and my parents were saying goodbye to me. I’m not religious at all, but I was very much thinking, I wouldn’t have been brought to this point to die on the table. I’d been through so much, with a coma and the recovery and rehab and all the prep work and medicines, I just had this feeling that I wasn’t gonna die on the table for all this.

Surgery was 12 hours long. When I woke up, there was a tube down my throat and then they slowly let me breathe on my own. The first real breath I took without that tube in my mouth was like the longest, deepest breath I’ve ever taken in my life. It was like if you’ve ever put minty gum in your mouth and you’ve gone outside on a winter day and you take that first breath. I’d never taken a very long breath before — it was always labored, short breaths.

Getting an organ transplant is a range of emotions. I have a lot of survivor’s guilt because I’ve met both of my donor’s families and I saw how much of an impact they had on their families’ lives, and I can never replace that. In terms of self-preservation, though, you’re obviously happy to be alive. But I still feel really bad that these people are missing their loved ones. I tell people all the time that I don’t get mad at normal things like traffic and cold coffee because I got to leave the hospital and two other people didn’t — so I have to be forever grateful for that.

The funny thing is, I went to a party five days before my first transplant, and unbeknownst to me, there was a girl flirting with me. I wasn’t picking up on it because I’d been out of the game so long. At the end of the night, she asked me out. I was like, “What?” I wasn’t thinking of anyone being sexually attracted to me. So I said, “Sure, let’s go out this Friday.” Then I got the call Wednesday morning, and she was literally the third person I texted that morning when we were driving to the hospital. I was like, “We’re gonna have to cancel the date for Friday. You’re probably never gonna have another person cancel a date like this, but I have to have a lung transplant.” She came and visited me, and I walked out of the hospital 10 days later with a girlfriend, and a new beginning in life. Eventually I moved to Richmond to be with this girl. We don’t date anymore, but in Richmond, I met the woman I’m married to now, so it was all a path.

Five months after my first transplant, I ran a 5K and haven’t looked back since. When I turned 35, I ran 35 races in honor of being able to turn 35, because as a kid, doctors told me I wasn’t going to make it past 18 or 21. But when you’re 9 or 10 years old, nobody wants to hear that shit. So yeah, I ran that many races to celebrate reaching 35 years old.

The Second Transplant

I needed a second lung transplant because a guy at work got me sick with pneumonia, which made my body reject the lungs I’d had from the first transplant. My lung function went down to 27 or 28 percent. I wasn’t as sick as I was ahead of the first transplant, but I definitely wasn’t out running races and living my life to the fullest. My relationships were hindered again with the opposite sex: You can’t really perform in the bedroom if you can’t breathe. For the second transplant in 2013 I was on the list probably about nine or 10 months. 

During the second surgery I had more complications because of all the scar tissue from the first transplant. They cut through all of that, so I had a bunch of bleeding and my kidneys and my pancreas failed, and they put me in a coma for 10 days. Then I was on dialysis and all kinds of stuff. I was in the hospital for three weeks, whereas for the first transplant I was only in hospital for 10 days.

Reaching Out

After my first transplant, I didn’t reach out to the donor’s family. Two and a half years had gone by when I met another donor mom. I told her my main concern was that I didn’t want to write a letter to the family and rip off a Band-Aid if they’d gotten peace with their loved one passing away. But she was like, “No, this person wants to hear that something good came out of something bad.” So I wrote a letter. Two weeks later, I got a response, and we had a great relationship. She passed away a week before my second transplant. 

After the second transplant, as soon as I was out of the hospital, I wrote a letter to that donor family, because I didn’t want to wait as long as I did before. I have a great relationship with that mother. That said, I don’t think the father has come to terms with his son’s death yet, so he doesn’t want to know who I am.

In Hindsight

I’m happy for every day I have, but I also have a pretty morbid sense of humor. I ask my wife all the time whether she’s picked out a new husband for when the day comes and I’m not here anymore. I take medicine that’s basically killing me because it’s keeping my immune system low enough that my body won’t reject my lungs, but it also makes me very susceptible to illness. Cold and flu season is the worst time of the year for me.

Somebody was asking me, what it’s like to be 40 when you weren’t supposed to be 40? I said I’m kind of the milk in the back of the fridge — I’ve already hit the expiration date so I’m just waiting to get thrown away at this point. People tell me I have a very bright perspective: I do, but I don’t — I’m always waiting for the other shoe to drop.

The whole thing is a mindfuck because, like I said, for most of my life, people were telling me I was gonna pass away early. I get pretty much to the brink of death when I’m 25, and then it’s just a constant back-and-forth of: You’re gonna die… No, you’re fine… You’re gonna die… No, you’re fine. 

I’ve pretty much been waiting for this bucket to kick for a very long time, so I didn’t do any planning in my life. I don’t have a 401(k). I don’t have any savings — I’m a check-to-check guy. My wife and I do travel a lot. In fact, once we got married, she told me I was going to have to get a passport, and that was probably the happiest I’ve ever been. Because despite the fact I’m still waiting to die for whatever reason, I’m really trying to see the entire planet before I pass away.

We’re leaving for another trip next Thursday.