How did we get here? I wonder. I’m six days shy of my sixteen-month anniversary—well outside of the most common period for rejection within the first year after transplant. I thought I was safe.
“Charity Tillemann-Dick?” calls a nurse.
She takes my blood pressure and tests my oxygen levels. They’re lower than I’m used to seeing. Then Dr. Budev opens the door—
“I’m so glad you’re here,” she quickly moves on to my prognosis. “I think there’s an infection in your lungs. I have an appointment in the bronch suite for you, but something looks off. There’s a strange sort of . . . mothiness in the lungs which shouldn’t be there,” she explains. “First things first, we’ll get a clearer picture with a CT scan. Then, you’ll go for the bronchoscopy.”
We race to fit in a CT scan before heading to the bronch suite. This will be my fifth bronchoscopy. Before they snake the camera down my throat and into my lungs, I have to inhale a lidocaine nebulizer for twenty minutes to numb my trachea. Puffing away on the soap-flavored gas, I lament. They used to say I wouldn’t need to have these procedures anymore. Now I wonder if I’ll ever reach a new normal.
When my gag reflex is totally numb, I’m rolled into the surgical suite. The space looks straight out of a sci-fi flick: stark white and gray interrupted by screens, medical machinery, and tubes. It’s cold, so I’ve been wrapped in thin blankets. The nurses and doctors strap on their colorful aprons, confirm my name and date of birth, then administer anesthesia. As I drift off, I’m not nervous about surgery; that’s become routine. I am nervous about what it might reveal about my lungs.
The scene blurs to black. I wake up hours later in the hotel room.
“Hey, honey, you want something to eat?” Yoni asks, sitting beside me.
I’m starving. I haven’t eaten a real meal since we left Denver. But nerves combined with nausea mean I’d rather forgo food than throw it up an hour from now. Instead, I fall back asleep. At 2:00 a.m., I wake again, disoriented. My temples feel like they’re being squeezed together as a giant lead ball rolls back and forth between them, banging into my skull on either end. Saliva pools in the back of my mouth and I start to hiccup uncontrollably. Yoni rolls out of his bed on the other side of the room.
“Chary,” he says groggily, “what’s the matter?”
He stumbles after me as I run to the bathroom, grabbing my hair for me as I retch into the toilet. Pulling my hair back into a ponytail, he calls the hospital.
We drive to the ER in the faint morning light, where we’re rushed into a dark room. Doctors inject painkillers, but nothing helps. For three days, there’s no relief. The constant pounding shatters inside my head, sending shards of pain to the farthest reaches of my body.
“I think she may need a lumbar puncture. We’ll go into the lower back to extract fluid from your spine,” explains the young doctor on call. “If it’s meningitis, we’d like to deal with it immediately.”
I’ve never heard of a lumbar puncture before, but—even in my desperate state—it sounds like something I want to avoid—
“Is there anything else we can do?” I ask faintly.
“Well, we can do an MRI. It will rule out a number of other potential causes—like a brain tumor,” suggests the doctor.
I nod my head in consent.
Around midnight, the nurses arrive to take me for an MRI. Loading me onto a gurney, they roll me into an impossibly white room, then transfer me to a narrow plastic plank curved to cradle a body. The machine hums to life and my body slowly descends into its sterile white maw. Once inside, deafening knocking, buzzing, and pounding surround me. But somehow, as these noises cancel out the rest of the world, my pain breaks. It’s not gone, but there’s a decrease in pressure. The nausea and discomfort abate. A nurse returns me to my hospital room and, for the first time in four days, I sleep.
Early the next morning, I hear a familiar voice—
“Good morning, sweetheart.”
My eyes flutter open. Mom is here.
“Honey, I’m sorry about everything,” says Mom. “I was just so worried something like this would happen . . . Don’t worry. Yoni’s resting back in the room.”
A few moments later, Dr. Budev walks in.
“Well, it’s not acute rejection,” she starts. “But you have a terrible infection in your lungs. It looks like it’s been growing for weeks.”
We speak for a few minutes. I should be relieved. Infections are treatable. But I can’t help but feel the doctor is skirting around something serious. A much more ominous diagnosis.
“Mom,” I whisper after Dr. Budev leaves, “she didn’t rule out rejection.”
“Don’t be silly,” says Mom. “She just said it’s not rejection!”
“She said it’s not acute rejection. But it could still be chronic rejection!” I say, almost frantic now. While I’m fuzzy on the pathological details, I know there’s a vital difference between the two types: Acute rejection is reversible. Chronic rejection isn’t. The latter implies cellular fibrosis of the transplanted organ—in other words, permanent damage. Some people live with that damage, using the rejected organs for years—even decades. But those are best-case scenarios. And once chronic rejection starts, there’s no stopping it.
Before Mom can respond, the door edges open—
“Knock, knock!” chirps the bespectacled doctor from before. “We’re here to perform the lumbar puncture!”
“You’re here to do what?!” demands Mom.
“A lumbar puncture,” he repeats. “We go into the lower back to extract fluid from—”
“I know what it is,” interrupts Mom. “Why on earth do you want to give my daughter a spinal tap?!”
“Well,” he says, “we think she might have meningitis.”
“Doctor, Charity has a history of vomit-inducing migraines after anesthesia or painkillers. She was numbed and put under for her bronch. This latest episode was an admittedly extreme case of a typical reaction for her,” explains Mom. “So I’ll repeat my question: Why on earth would you subject my daughter to this painful, unnecessary procedure? And after she’s already been through so much,” she finishes, finally taking her crystal blue eyes off the doctor to shake her head in exasperation.
“Look, miss, we’re going in circles. We still haven’t ruled out meningitis,” he declares more insistently. “So we’re going to do a lumbar puncture and we’re going to do it now.”
There’s a moment of tense silence.
“Then I refuse treatment,” I state calmly.
“You refuse treatment?” He raises his eyebrows at me, visibly peeved.
“Yes. I refuse.”
“Turn it around, folks,” he says to his nurse who is holding the medical instruments. “The patient refuses treatment.” They trundle out of the room.
Glad to avoid another battle, I am nervous about how I will make it to my next performance in California. Had it not been for the infection, I would have returned to New York after Christmas. I am supposed to fly out of JFK to San Diego for a performance in Balboa Park. Changing the ticket will be complicated and expensive. And there’s no way Mom will let me go alone now.
I ask for my phone to text Yoni about scheduling. Glancing at my email, there are over one hundred new messages. “Congratulations!” reads one subject line. “You’re amazing!” says another. Facebook reveals that the video of my TED talk was released two days earlier when I went into the hospital. People seem to like it—it already has nearly a quarter million views. I should be thrilled. Instead, I wonder if Dr. Barst has seen it. When she does, will she forgive me?
“Charity,” says Mom, almost shaking me from a trancelike state, “they’re going to release you tomorrow. Isn’t that wonderful?”
Looking up, a doctor stands in the doorway, smiling. But darkness clouds my senses; there’s something missing. I smile back uncomfortably, trying to think of what could be wrong. “There isn’t anything else I should know?” I ask, hoping he may relieve my sense
of foreboding.
“You just need to make sure you’re taking those new antifungal meds,” he says seriously, referencing a noxious slurry I swallow to protect my lungs from infected spores. “Frankly, I don’t know why they stopped that in the first place. It probably could have prevented this infection before it started . . .”
A knot forms in my throat. I pled with my doctors for months to remove the antifungal from my regimen. It tasted awful and I had to eat fourteen grams of fat with each dose—equivalent to nearly half a stick of butter every day. That was fine back when I was a hundred pounds soaking wet. But, edging my way toward a fifty-pound weight gain, I was eager to rein it in. Now once again sitting in a hospital bed, guilt washes over me. I’ve done this to myself. Could my vanity lead to chronic rejection?
“You think you can handle that?” asks the doctor, recapturing my wandering attention.
“Yes,” I reply distractedly. “Yes. But will a nurse go over everything again before my release? I’m not feeling quite like myself right now, and I wouldn’t want to miss anything.”
“She’ll be fine,” Mom declares. “She’ll come back to Denver where we can take care of her properly.”
We say goodbye to the doctor before I begin to protest.
“Mom, I can’t come back to Denver. I have a performance in California in two days.”
“Charity, this morning you were going to get a spinal tap! You’re not flying to California the same day you’re discharged from the hospital to perform the day after that. That’s insane!”
I know she’s right. But that doesn’t mean I’m wrong. Sometimes when life refuses to be reasonable, you’re forced to respond in kind. I am so constantly dogged by drama that my situation will probably never be ideal. If I try to relaunch my career by canceling after every medical mishap, there soon won’t be anything to cancel in the first place. I can either take opportunities as they’re given to me, or resign myself to sitting in a hospital bed forever.
I pause, trying to read Mom’s mood. Then I pull out my phone and show her the video of my TED talk—
“Mom. I’ve been given a second chance. But you know show business—if I can’t perform, I’ll be written off. Nobody will be willing to risk booking me.”
“You’re crazy,” she reiterates, unmoved. “I am calling whoever is putting this on to cancel. Give me the number.”
“I don’t have it here,” I stall. “Look at it this way: it’s January. It’s cold everywhere except for San Diego. You know how much I love performing—this will be more like a vacation than work!” I see her softening, so I keep going. “Either I have to leave now and drive cross-country—”
“No way.”
“. . . or I have to fly.”
Mom averts her eyes in frustration.
“Mom, what’s the difference between flying to Denver or California? I’ll wear a mask. I’ll wear three!” I assure her.
“. . . Well, I’m coming with you,” she declares after a pause.
“Mom, I’d love that, but tickets are really expensive,” I start to protest.
“Then you’ll use the money you’re making from this performance to get me one.”
Stopping for a moment, I feel my blood pressure rising. Can’t anybody treat me like a grown-up? But the more I think about it, the more sense it makes. I call Yoni and ask him to book the tickets. This time, Mom’s right.
San Diego is a big success, leading to two more performances there less than a month later. Following those, I meet Yoni in Cleveland for my follow-up appointment. When we arrive, a camera crew from the hospital’s PR department shadows us. They’ve been trying to schedule a sit-down for months and now that my TED talk has gone viral, they’re more eager than ever to include my story in their media package. I don’t mind it. I’m feeling somewhat better—my spirometry has stabilized, though it’s yet to return to its pre-November levels; I’m still coughing up blood, though with less frequency than before.
We go through the usual routine, but this time with film cameras recording each step. Then—
“Charity?” calls the nurse.
We follow her into the checkup room and I squeeze Yoni’s hand. The film crew follows behind us. Pushing open the heavy wooden door, Travis, my transplant nurse, enters.
“Would you please excuse us?” Travis asks the film crew. As they leave, he turns to face me.
“I’m worried about you and noncompliance,” he says sternly.
“What are you taking about?” I flinch at the suggestion.
“You’ve asked me to change your Monday blood draws at least two times—maybe more.”
“Yes,” I respond. “And you’ve always said yes. I don’t see how that’s noncompliance.”
“Compliance would be getting your blood drawn on Monday. Not Tuesday or Wednesday.”
“Wait,” Yoni interjects. “You’re telling us that when you say, ‘Sure, Charity. You can get your blood drawn on Tuesday!’ getting her blood drawn on Tuesday is actually noncompliance? That makes no sense.”
“Look. All I’m telling you is—And look at you!” Travis interrupts himself, gesturing at my feet. “You’re crossing your ankles!”
“No one ever told me not to cross my ankles!” I say, my voice rising.
“Well, that can lead to rejection.”
I quickly uncross them, bewildered. All of a sudden I feel like there’s a secret checklist and, if I don’t guess what’s on it, something terrible will happen. In the wrong circumstance, almost anything can spur rejection, making guidelines for transplantees involved and convoluted. After discharge, patients are given a lengthy list of instructions: avoid large crowds, wash hands regularly, take your meds on time. Don’t eat grapefruit or soft cheeses, do use straws, don’t attend events where people buy tickets in advance, never wade in a lake. Some of the things are universal. Others depend on where a patient is transplanted. Some rules are written down, and others are left to the discretion of the coordinating nurse to communicate with their patient.
“I just want you to be safe. That’s all,” Travis says. But his words are far from reassuring. As he walks out, my brow furrows. Crossing my ankles causes rejection? Sitting beside me, Yoni looks as confused as I feel.
After a few minutes of perturbed silence, Dr. Budev walks into the room.
“Charity,” she says, sitting at the computer and pulling up that morning’s scans, “we need to look at the results of your CT. See these diamond-ring shapes?”
I nod. As she scrolls through pictures of my lungs, there are occasional silhouettes of a swelled-up diamond ring.
“Those are bronchial oblasions. They were there when we saw you last month, but we couldn’t do anything about them until the fungal infection was gone.”
“What can we do about them now?” I ask.
Dr. Budev looks at me seriously. “Charity, the oblasions mean you have chronic rejection.”
I put my face into my hands. Chronic rejection. The words roll through my head like a migraine. It feels like a family member has died and I’m to blame. I rescheduled the stupid blood draws. I was late taking my medication—more than once. I’d crossed my ankles. Clearly, I’ve done this to myself. I am responsible.
“What about retransplant?” asks Yoni after a long silence.
“It does happen occasionally. If candidates are young, well-qualified, and compliant,” she says, reaching over to squeeze my shoulder. “But that’s a long ways off.”
There’s a tap on the door. It’s the film crew.
“Could we get a few shots of you guys together?” they ask, unaware of what’s just transpired. In a daze, I watch as Dr. Budev points to different parts of my X-ray on a light board.
“So we’ll see you across the street at two?” asks the cameraman.
I nod yes listlessly as the crew packs up.
“Chary, are you sure you want to do this interview?” Yoni whispers. I nod again in a daze. “But . . . we need to call your mom—your family.”
“We’ll figure that out after my interview.” The gray clouds coordinate with my psychological state as we walk back to our dingy hotel room.
Sleet begins to fall. As I ascend the stairs to the interview, I feel the weight of my feet. By the top of the staircase, I’m out of breath. I sit in the large, sparsely decorated room and share the story of my transplant and recovery, barely even conscious of what I’m saying.
Afterward, Yoni hands me my phone.
“You need to call your mom,” he urges.
I start to cry. Yoni wraps his arms around me.
“This is my fault, Yoni. If I had just been more careful—”
“Stop, Charity. Don’t say that. Don’t even think that. Sometimes bad things just happen and no one can do anything about it. It’s awful. I know. But right now, you have to call your mom.”
“I just— I’m hoping if I don’t say anything, it will go away—that it won’t be real.”
He holds me in silence for a few minutes. After nearly a decade, I am so close to independence. I’m managing my own medications. My own health care. I am supporting myself with my performances and have a full schedule lined up. Now, everyone could respond just like Travis—entitled to point out all of the mistakes I didn’t even realize I was making. Inhale. Exhale. I press the call button.
I tell Mom first, then my brothers and sisters, then my grandmothers. They’re as supportive as they can be in the midst of the news. Yoni calls his family. He says, “It feels like we got the wind knocked out of us” over and over. If it were only that. For me, it feels like I’ve had my lungs ripped out of my body and someone else’s sewn in, all for nothing. If I had died quickly, at least my family could have gotten on with their own lives. Instead, I’ve tortured them through a decade of disease and disappointment.
We finish the miserable work and Yoni takes my hand. Back in our room, I shut myself in the bathroom to change into PJs. I brush my hair and floss, avoiding my defeated eyes in the vanity mirror.
Yoni tucks me in and kisses my forehead before crawling over into his bed on the other side of the nightstand. He reaches across the gap between us to grasp my hand.
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