You Can Stop Humming Now

by Daniela Lamas

  Knowing this, I was initially hesitant to meet Cindy. Choosing to tell her story, of all stories, might be to ignore the darker aspects of this machine and the way that it can destroy a person, prolong an inevitable death, and devastate a family. I was concerned that Cindy might have been too lucky, that her story was too perfect and therefore not representative. But then in that first conversation, she showed me her scars. Survival wasn’t as smooth as it might have looked when she walked in, coiffed and smiling, with her husband beside her.

  And it occurred to me that even with her transplanted lungs, she was still holding her breath, waiting. Indeed, soon after Cindy and I first met, I learned that she was back in the hospital. It was her first hospital stay since her transplant, and she ended up on the same floor where she’d spent weeks after being transferred out of the ICU. She knew all the nurses and it was good to see them again, but it was disconcerting, too. This was the floor where she had come off the narcotics and anxiety meds she relied on while waiting for her lungs. She had been in pain there. When she left, she thought she had closed that chapter of her life for good. But there she was, once again hooked up to supplemental oxygen, the feel of the plastic prongs in her nose eerily familiar.

  Derek spent the nights in the recliner next to his wife’s bed, slipping into his habit of watching the peaks and valleys of her oxygen levels on the monitor. He did not sleep. It took them both back to the weeks and months of waiting for the transplant, to the fear and uncertainty that had characterized every moment. Cindy’s children panicked, as if they believed their mother would never come home again. Though Cindy reassured them, she, too, felt on edge. She underwent a bronchoscopy, this time to look for a source of infection or evidence that her body was starting to reject her transplanted lungs. She tried to tell herself that she had taken good care of the new lungs, that she hadn’t missed a medication and she had avoided infection, and things would be okay. But after all that had happened, she knew that none of it was really under her control.

  It was only there in the hospital that Cindy ever mentioned the specter of rejection to me, and with it the reality that her transplant won’t last forever—that no matter what she does, she might one day leave her children motherless. She had always known this, but something about that first admission since the transplant made it real. And even though Cindy was ultimately sent home feeling better and once again off oxygen—there was no rejection after all—she found that it was hard to bounce back. I wondered if she’d started to realize that this would be her new reality, stretches of relative normalcy punctuated by hospitalizations, each cough a reminder of the possibility of rejection.

  “Maybe I’m just in a rut,” Cindy told me one Saturday, a few weeks after her hospital stay, from the living room of the comfortable home where her family gathered for their usual weekend meet-up. The painful neuropathy that had plagued her since her transplant was at its worst that day after a few recent med changes. Her feet were numb and tingling, and searing pains shot through her legs when she touched them. She couldn’t even sleep close to her husband at night. Cindy’s youngest daughter, who had recently turned five, hung off her mother’s arm, hesitant to leave the circle of adults even though her choice of cartoons played on the television upstairs. Cindy touched her daughter’s hair gently as she tried to keep the child from lying on her legs. Her daughter had learned to be careful around what she called “Mommy’s broken leg,” although she’d occasionally forget.

  Perhaps Cindy would feel better if she could get back to work. She had always enjoyed that part of her life, and found herself longing for the independence that came from making her own money. But she had been a geriatrics nurse who cared for patients in a nursing home, likely one of the worst jobs a new lung transplant recipient could possibly have. One of her older daughters had half jokingly suggested that she could become a school nurse. Cindy considered the idea briefly, but she worried that being exposed to sick kids wouldn’t be any better. Maybe she could do paperwork in a doctor’s office, if her transplant team gave her the okay. It would not be great but it would be something, at least. She would have to remember to call her doctors to ask.

  There was a framed photo on the mantel under the television in Cindy’s living room. In it, she stood in the ICU with her transplant surgeon, Dr. Camp. She was so weak back then that the surgeon had to use his arms to hold her body up. Cindy had returned to the unit where that photo was taken a few times, to see the doctors and nurses who had cared for her, but also to talk to patients on ECMO, waiting as she once was, to show them that things could get better. She brought them crossword puzzles and Sudokus, anything to keep their minds busy, and she tried to make them smile. It was hard for Cindy to be back there, but it felt important to do this, so she went.

  I glanced from the woman in the photo to the woman across from me. She looked like a different person back then, and I told her so. I meant it as a compliment, and she smiled momentarily, but then she shook her head. She wasn’t comfortable with the way she looked, she told me, not anymore. Even though she tried not to dwell on what she described to me as “these little things,” it was jarring for her to see her body. She had recently met with a plastic surgeon to ask if he could do anything about the worst of the scars, the one on her abdomen from when she was bleeding there, but he said that after so many surgeries it would be risky to operate on that area.

  There had been too much risk already. Cindy set the idea aside. She would wait, and maybe the scars would fade over time. Or perhaps she would grow accustomed to them until, little by little, they became a part of her.

  7

  Networking for a Kidney

  Eddie Beatrice moved quickly, without hesitation. He gripped my hand and gave it a strong squeeze. As we sat, he pulled his smartphone out of his pocket and laid it on the table so he could keep track of the time. He had a doctor’s appointment across the street and did not want to be late. I watched him for a second as he took a quick sip of his coffee. Eddie has a salesman’s easy familiarity and a kind face, and as he set down his cup, I found myself wondering whether I would be willing to give this man a kidney.

  I know. But it’s not that strange a thought, in context. When Eddie was facing years on dialysis and the grim prospect of climbing a transplant waiting list, he had decided to take matters into his own hands and secure himself a kidney donor. A Google search, a few well-phrased e-mails, and a good deal of luck later, Eddie encountered a stranger across the country who said that she was willing to give him one of her organs. I found Eddie on the Internet as well, but we were meeting for a different purpose. I wanted to know what it took to do what he did—to consider the undesirable future his doctors had laid out for him, fistulas and fatigue and waiting, and to find another way forward.

  In medical school, my classmates and I had the opportunity to sign up for two days with the transplant pager hooked to our belt. This meant that if someone in our geographic area died and that person was an organ donor, a shrill beep would sound. The lucky med student who was carrying the pager when it went off would travel with the surgeons to pick up the organ and return with it to New York City.

  When it was my turn with the pager, I clipped it carefully onto the waist of my pants. I knew, somewhere within me, that I was waiting for someone to die, but I was excited nonetheless. And I was disappointed when the pager stayed silent for the entire forty-eight hours. Months went by before I finally saw a transplant.

  Early one winter morning, outside the operating room, I pushed my curly hair into a cap, put on a mask and goggles, and scrubbed my hands with an uncharacteristic degree of fastidious attention. When I finished, I followed the surgeons into the OR and watched their choreographed movements as the scrub technicians dressed them in sterile gowns and gloves. The patient was already on the table, breathing tube in place, sedated by the milky white medicine that hung from the intravenous pole behind his head. I watched the surgeons carve a long incision into the patient’s lower abdomen. I
hadn’t yet felt the sensation of using a knife to split flesh, and I found myself mimicking their motions with my own hand and wondering how much force they had to use. Then I watched as they divided the muscles that made up the abdominal wall and carefully dissected down to reveal blood vessels and bladder. I stood on a small metal lift, but even so, I had to crane my neck over the surgery fellow’s head to see what was going on.

  As I peered into the abyss of the abdominal cavity, the donor kidney appeared from somewhere behind me. I didn’t know where it had come from, and when my view became obstructed again, my mind started to wander. I wondered about the man who lay there on the table in front of us and what sort of illness had brought him to this point. I wondered, too, about the kidney that was being sewn into his body and whether it had come from a friend or a family member or a stranger whose life had, perhaps just hours before, ended in tragedy.

  “Make sure the med student gets to see this,” I heard one of the surgeons say, and the gowned and gloved bodies in front of me parted so I could break from my daydream to observe the final step. “That’s cool,” I said, as the surgeons connected the donor’s ureter, which is the tube that carries urine to the bladder, to the patient’s bladder. These are a medical student’s reflexive words of appreciation, but this time, thinking less about the surgical feat than about the fact that an organ had just been moved from one body to another right in front of my eyes, I meant it.

  Soon after, on a similarly dark early morning, I observed an organ harvest. A man lay on a stretcher in the operating room. He was brain-dead. The OR staff placed sterile drapes around his chest and abdomen. Then the surgical teams assembled. They were all from different hospitals, and they’d traveled here to take this man’s organs back to patients waiting in their own institutions. I watched the surgeons as they opened the man’s body with an incision running from his chest down to his abdomen, identified and clamped the vessels that had circulated his blood in life, and moved quickly to dissect out his organs and place them on ice. I saw his heart, his lungs, liver, and kidneys. I was transfixed.

  It was cold in the operating room, and by the time the surgical team had sewn closed the body and left, the man was empty inside. I hesitated for a moment, alone with the gutted body and the organ donation coordinators, who by this time were debating whether to grab an early lunch at the Italian place down the street or go to one of the falafel trucks parked outside the hospital. When they settled on the Italian spot for subs and left, I stayed in the empty room alone. I was shivering.

  Standing there, and then more fully later, I realized it wasn’t the surgery itself that had grabbed hold of me. It was awesome, to be sure, and part of me will always love the routine and the theater of it all, the way the surgeons twirl around to close their gowns, the way the one in charge strode in wearing cowboy boots and selected his music—that day, classic rock. But what really held me captive there in the OR was something else. It was the weight of what had come before and what would come after. I wanted to understand what happened when an organ passed from one person to another, intertwining the lives of complete strangers. I wanted to learn about the odd relationships forged over kidneys, livers, and blood types, the messy place where illness, need, and inexplicable altruism coexist. Surgery was sterile, yet what intrigued me as I stood alone in that cold, empty operating room, and in the months and years to come, was anything but.

  On the Friday of Columbus Day weekend in 2011, the year I finished medical school and started my internship, Eddie Beatrice checked into his local hospital. He was in his late forties at the time, happily married and living outside Boston with his wife and teenage son and daughter. Things were going well for him overall. He had recently decided to make a go of it and build his own sales and marketing e-commerce business. In his spare time, he’d picked up a boot-camp workout regimen and was getting “pretty svelte” for his age. When he went to see a doctor about the bothersome twinge that had become an ache in his shoulder, he learned that the decades of softball and hockey he’d played with his buddies had taken their toll and he’d need to undergo rotator cuff surgery. It would be inconvenient, as this sort of thing generally is, but the plan seemed simple enough—surgery in the fall, rest and recover through wintertime, ready for softball season by spring.

  The surgery seemed to go smoothly, and he went home as scheduled. But he suffered through the weekend with an intense red-hot pain in his shoulder that was far more severe than he’d expected. He resolved to tough it out. By Monday, nauseated and retching until his stomach was empty, Eddie suspected he might be contending with more than simple postoperative pain. He continued to minimize his wife’s concerns, hoping he would get better on his own, until the next morning, when he found himself too weak even to stand. His wife, an MRI technologist, had already left for work. As his daughter prepared to head off to school, she called upstairs. “Daddy, I’m going to school. Are you going to be okay?” No, he said to himself. He wasn’t going to be okay at all. But he’d do anything to keep his daughter from worrying, so he told her to head to school, but to please give her mother a call on the way. By the time his wife walked through the door she found her husband pale, sweaty, and trembling. She helped him into the car and drove him straight to the emergency area of the local walk-in clinic. There, Eddie passed out.

  Bacteria cascaded through his bloodstream. His vessels dilated and his blood pressure plummeted. Doctors ordered escalating doses of medications that worked directly on his heart to lift his blood pressure to the levels necessary to send blood to his brain and other organs. Thinking the nausea and vomiting of the previous day might be a clue as to what was going on, surgeons rushed Eddie into emergency surgery and opened his belly. They couldn’t find any source of infection inside him, so they closed his body up again and transported the now unconscious man back upstairs to the ICU.

  Days passed. He didn’t improve. A priest came to administer last rites, and his children sat by his bedside, preparing to say goodbye to their father. Eddie’s wife and her sister, grasping for something they could do to help, decided he needed to be transferred from the suburban hospital near their home into Boston, to “the best hospital in the world.”

  Even there, doctors were at a loss as to what kind of infection had initially ripped through Eddie’s body, but slowly, his blood pressure stabilized. He could breathe without the tube. Eddie had lived. But as the haziness and delirium cleared, he learned that every other day someone would roll his stretcher out of his hospital room, into the elevator, and to another floor, where he would join a group of patients hooked to dialysis machines for hours at a stretch. He wasn’t really sure what was going on or why, until his doctors told him that his kidneys weren’t working. At first he assumed this, too, would pass. He resolved not to ask too many questions and to let the doctors do what they needed to do.

  Eddie’s doctors hoped that his kidneys had just been “stunned” by his devastating infection and shock, and that their function might return if they were given sufficient time to recover. The kidneys are sensitive organs, after all, and when the body gets sick and its blood pressure is low, they are often the first to show signs of damage. When Eddie started to make urine again, his doctors seemed excited. “That’s a good sign, Eddie. That’s a good sign,” they told him.

  Eddie relayed these optimistic updates to his wife and children. But the urine production was deceptive, and Eddie’s kidneys were still too damaged to do their job of removing waste from his blood. By the end of December, Eddie’s doctors had changed their message. They told him that his kidneys weren’t going to recover after all. He didn’t want to believe them, so for a time he underwent dialysis through a temporary catheter, unwilling to submit to the surgical procedure that would have connected an artery to a vein in his arm to create a fistula through which he could be dialyzed longer term. But despite Eddie’s good nature, hopefulness, and dogged belief that things would be okay, his kidney function didn’t come back. And slowly the reali
ty set in—it wasn’t going to.

  When he finally returned home that winter, three months after his shoulder surgery, Eddie had lost forty pounds. Forget spring softball and the promise of the new company he’d been trying to build: he was too sick to do anything much during the day except wait for his next outpatient dialysis session. When his wife went back to work, his friends set up a rotation, driving Eddie to dialysis and then picking him up to return home. At the dialysis center he entered what felt like an alternate world, with long stretches of boredom punctuated by moments of fear. You would think being on dialysis is just about sitting still and waiting until it is over. That is certainly part of it. But from time to time Eddie’s blood pressure would drop as his blood left his body to run through the dialysis machine, and he’d grow weak and his head would swim and he would end up in an ambulance on his way to the ER. Other times his body temperature would get out of whack and he would tremble so hard it seemed like a seizure. Most days, though, it was quiet. There was the television and the hope that he might be able to dull his mind and even fall asleep.