You Can Stop Humming Now

by Daniela Lamas

  After the tracheotomy, Cindy woke slowly. At first, still trapped inside the swirling delirium of her mind, she saw babies crying on her bed, imagined rain coming from the ceiling, and believed that her husband had cheated on her with the nurses. When the meds started to clear, she found herself in a different sort of nightmare. She opened her mouth but made no sound. There was a tube in her neck connecting her to the ventilator, and slowly she pieced it all together; she had taken care of patients with tracheostomy tubes, and now, while she’d been unconscious, she had become one of them. Unable to talk, too weak even to write, Cindy was “heartbroken” and maybe even a little angry with Derek because he had given the okay for this to happen to her. But she didn’t tell him that. She knew him well enough to know that under his police officer’s controlled exterior, he was in over his head. They both were. Besides, he hadn’t been offered any acceptable alternatives. So she kept her thoughts to herself. And she waited.

  Waiting sounds static, safe, almost. But really, it was as if she were balanced on a tightrope: the smallest perturbation could mean disaster. And while she waited, just as Derek and the kids were getting ready for her to come back home, though now with a trach and a ventilator, Cindy spiked a fever. Her oxygen needs skyrocketed. Back in the intensive care unit, doctors gathered around Cindy’s bed, their movements crisp and language sparse, stripped of the casual jokes that so often pepper conversation. Derek paced the windowless hallway outside the ICU for minutes that felt like hours, so nervous he was almost vibrating, until one of the doctors, Phillip Camp, emerged to talk with him. Camp is a burly man who’s both a transplant surgeon and a lieutenant colonel in the U.S. Air Force, and he has the reassuring, unwavering confidence of someone who has actually seen it all. I imagine him leading Derek to a small conference room, the type with plastic chairs and a table sticky with pastries other families had nibbled on the worst days of their lives, to tell him about something called ECMO.

  Even with the ventilator at its highest settings, Cindy’s oxygen levels were teetering. So Dr. Camp explained that if Derek gave the okay, he would place two catheters in Cindy’s largest veins, one in her neck and one in her groin. Cindy’s blood would leave her body through one of these catheters and run through a machine next to her bed. After the machine had done its job, which was to take the place of Cindy’s lungs, the healthy blood would return to her body through the other catheter. The surgeon told Derek that once his wife was connected to this machine, she might not need the ventilator any longer, so she could wake up and maybe even talk. If things went well, the surgeons would replace the catheter in her groin with a single two-part catheter in her neck. With her legs free, Cindy would be able, and required, to walk. This was important, Derek would learn. Walking would be necessary if she was going to stay strong enough to remain on the lung transplant waiting list.

  Sometimes it’s hard to decide whether to start ECMO—if it seems too early in the course of illness, maybe it’s not worth the risk; if it seems too late, the patient might already be too far gone. With few strict rules to govern this decision, it’s a difficult judgment when someone is on the border of being too old or too sick with other diseases to benefit. But for the team taking care of Cindy, the decision was about as clear as it gets. Already, she’d been on the list for lung transplant, which meant that a group of doctors had methodically considered her case and deemed her body and mind able to withstand one of medicine’s most aggressive interventions. Besides, Dr. Camp knew Cindy. He had seen her in outpatient appointments, he had been the one to take her to the OR when she needed the tracheostomy tube, and he knew she was stubborn and “exquisitely focused” on doing whatever she had to do to stay alive for her children.

  When Camp talks to families about starting a loved one on ECMO, and about the lines and tubes and repeated bronchoscopies that come with it, he knows he is talking to men and women in the midst of incomprehensible crisis who might not remember much of what he says. He is honest in these conversations, but he is gentle, too, as he lays the groundwork for what might come.

  A patient whose life is being prolonged by this machine can bleed or she can clot. Either of these outcomes can be devastating and possibly fatal. And unlike the VAD for the heart or dialysis for the kidneys, ECMO isn’t designed to support the failing lungs indefinitely. Think of ECMO as a bridge, Camp explains. A bridge goes from one place to another. That means the bridge has to end somewhere, either at recovery or at transplant. So if at some point things aren’t going the way everyone hopes, and those goals are no longer achievable, Dr. Camp and his team might decide that ECMO needs to stop.

  But at the moment, one fact was clear: Cindy’s doctors needed to do something. Her small ICU room was transformed into a makeshift OR. Operating room nurses arrived bearing sterile surgical trays and headlamps. There was barely enough space for all the people and their equipment, and from outside the room it must have looked like chaos, but once Dr. Camp prepped Cindy’s groin and neck and made the first incisions, time slowed. He felt the room go quiet as his concentration intensified. He didn’t know if Cindy would live to make it to transplant, but he did know that if all went as well as it possibly could, ECMO would buy Cindy something she didn’t have otherwise—time to wait for lungs.

  Days later, Cindy awoke to a new constellation of horrors. She was scared to move her head, worried that she would dislodge the ECMO catheter in her neck and die while her blood cascaded from the tubing. Though she didn’t want to move, she soon learned that if she didn’t get up and walk, if she let herself be paralyzed by panic, she could be taken off the transplant list.

  Just lifting her head was a struggle; I can’t imagine the effort it must have taken to stand. But even though she was tired and in pain and scared, she placed one foot in front of the other, with nurses and physical therapists behind and in front to make sure she didn’t fall and injure herself or the machine that was keeping her alive. On the few days when she felt that it was all too much, Dr. Camp would come to her room and stand at the foot of her bed and tell her that she had a choice: “Either you get yourself up, or I’m going to have to make you.” It wasn’t just a walk. He knew the stakes. One day would slide into the next, and if she didn’t get out of bed and grew too weak to tolerate a transplant, or ended up with a complication, the transplant team would have to take her off the list and it would all be over. So it was a walk or “a drag,” he told her, and she would walk just to spite him. That daily walk was the price she paid for the uncertain hope of freedom.

  She held on to bits of routine. In the morning, if she felt good, Cindy applied mascara and eye shadow while the news played in the background. Her nurses washed her hair. The guys at work had all donated their sick time to Derek, so he spent each day in the hospital, with walks to Dunkin’ Donuts across the street for a break if Cindy was feeling good enough for an iced coffee. During the day and into the evening, other family members stopped by. Her youngest child was terrified at first and would sit on Cindy’s sister’s lap for comfort rather than approach her mother in the hospital bed. In the afternoon, another relative or friend would drive the older kids over. They’d do their homework and watch television. Sometimes Derek blew air into the hospital gloves to turn them into balloons that the girls could bat around the room. There were lots of food deliveries, maybe frozen yogurt one night, Olive Garden another. When everyone had left and it was Cindy and Derek alone again, they’d turn on a movie and try to concentrate. Derek would sit in a chair at the bedside, and he’d wait there until Cindy fell asleep. Then he’d slip out, careful not to wake her, to close his eyes for a few hours or to go to the bar near the hospital for a couple of beers to calm his nerves.

  As Cindy’s weeks in the ICU became months, the carefully cultivated distance that keeps us doctors from our patients began to disappear. There were little things, like the time one of the doctors went to Walmart late at night to buy Cindy a huge water gun so she could surprise Dr. Camp when he came by on rounds. Or t
he way a resident burst into tears when she saw Cindy’s youngest child jump onto her hospital stretcher, so excited to see her mother that she no longer seemed to notice the lines and tubes and blood. Or the time the anesthesiologist on the ECMO team surprised Derek with a room at a fancy hotel in downtown Boston, just to give him a break from night after night curled up on a couch in the ICU family waiting room.

  But what Cindy’s doctors could not get for her was what she needed most—a set of lungs. And after weeks on ECMO, Cindy started to bleed. First she bled into her abdomen. It took the surgeons a long time in the OR to control the bleeding, and then, because she was still on blood thinners to tolerate ECMO, she bled into her chest. Again and again, blood accumulated around her lungs, necessitating trips to the OR to open the chest, drain the blood, and look for the source. She would return upstairs to her ICU bed sedated, and when she woke she’d find herself in pain, her body swollen from the fluids she’d received in the OR. Each time, she was determined to get up and start walking as quickly as she could. But a few days later, she’d start bleeding from somewhere else.

  Cindy and Derek didn’t talk about the possibility that a transplant might not come in time, but as each day passed and the complications became more frequent, they couldn’t help but think it. When Cindy had fallen asleep at night, Derek lay awake in the family room. He made promises. If Cindy got a transplant and she lived, he’d be the perfect husband. He’d never get annoyed. He’d be endlessly patient. When a doctor or nurse entered the family room in the night, he’d feel as if his heart had stopped, and he would wait there, unmoving, terrified that something had happened to his wife. Only when the footsteps veered away from the couch where he slept and toward someone else could he start breathing again.

  Cindy asked anyone who happened to be in her hospital room whether she would make it. She didn’t want to talk about her fears or engage in a conversation about the possibility that she might not get lungs. She just wanted someone to tell her that she would be okay. So the doctor or nurse or even the family member who heard her request would give her the response she was looking for: “Cindy, you’re going to get there.” She’d nod, trying to make herself believe the words, and for a second she would feel safe. But alone with her thoughts, Cindy couldn’t shake the fear that the lungs would never come and that she would never again see her children outside that hospital room.

  Derek could tell that Cindy, despite her insistence on continuing to walk and put on her makeup and see her children, was growing weaker. He knew she kept bleeding, and each time she went down to the OR she’d come back up with more tubes and drains attached to her. Though he never admitted his fears to Cindy, he started to suspect that they were near the end, and in spite of himself he began to think about the fact that he might lose his wife. He would sell the house they’d bought together, he figured. He’d move with the kids to a town closer to his work so he could see them during the day. But if he followed that train of thought any further, his chest got tight and he couldn’t breathe, as if he were about to have a heart attack.

  Even the unfailingly optimistic thoracic surgeon, Dr. Camp, began to wonder whether Cindy was reaching the end of the bridge and if it was time to shift the course they had set out on so many weeks before. He could make more trips to the OR, find something to patch, and then cross his fingers until she bled again. But he felt increasingly uncertain that this was in Cindy’s best interest. “You see the pain you’re causing her, and you have this horrible dilemma, wondering if you have changed from doing this for somebody to doing this to somebody,” Dr. Camp told me. “I was starting to worry that we had come up to that line.”

  Shifting course would mean acknowledging the very real possibility that Cindy would not get lungs. It might mean deciding not to return to the OR the next time Cindy bled, focusing instead on treating her pain and her fear. Ultimately, it might mean stopping ECMO.

  I’ve removed a breathing tube from a person who will die without it, and I have stood just outside the room, looking at my feet as I waited for the last slow breaths to stop and the monitor to go flat. But in these cases the person has been unaware and death has been imminent, unavoidable with or without the tube. With ECMO, we are talking about something different. We are talking about removing a life-prolonging machine that is no longer serving its purpose from someone who is awake and able to interact with the world, knowing that without it, that person will die.

  Dr. Camp’s team had taken care of Cindy in the hospital for more than two months. They’d seen her and Derek and the children every day and they had become close, maybe too close, but that’s where they were. “If you’re too far away, you sometimes don’t appreciate why you should go the extra mile for a patient,” Dr. Camp reflected. “But if you’re too close, you might not see why you should stop.”

  Just before sunrise the day before Halloween, Dr. Camp was still at home when he got the page. Cindy was bleeding again. He rushed back to the hospital to examine her and to make a plan. There in the intensive care unit where Cindy had lived for more than seventy days, he and his colleagues considered their options. He could take her back to the OR. He could open her chest and stanch the bleeding, knowing that it would start again. Or he could explain to Cindy and Derek that they had come up against the limits of what was possible, and this was the time to stop. With some hesitation, early that morning Camp booked an OR. He called Derek to let him know that he would take Cindy back down to try to stop the bleeding. It might be the last time.

  Soon after he made plans with the OR, his pager went off. Lungs. It had happened to him before, this sort of eleventh-hour notification just when it seemed the tides had turned against his patient. He logged on to his computer and started digging through the available information. The lungs looked good. He called his team. The next call went to Derek’s cell phone. Derek was on the way to the hospital anyway, but he recognized the number and picked up quickly.

  “I have some news for you,” Camp said.

  “What?” Derek replied, anxious. “How’s Cindy?”

  “We’re going to take her to the OR, but for something different.”

  “Is it going to help her?” Derek asked.

  “I think so,” the surgeon said. “We’re going to put some lungs in her.”

  Derek lost it. He was still driving, so Camp told him to pull over. On the side of the road, he collected himself. He had heard something different in the surgeon’s voice earlier that morning when he told him about the plans for the OR, a certain muted tone where before there had been optimism. But now, after everything, Cindy might get lungs. Derek drove to his aunt’s house and told her the news. Then he called Camp back. He wanted to make sure this was for real. “How certain is it?” Derek asked. “I wouldn’t be calling you if I didn’t think these were the ones,” the surgeon replied.

  When the doctors told Cindy that her trip to the operating room was postponed and that she would be getting her transplant later that night, she didn’t know how to react. She knew that she should feel overjoyed, but she was tired and she was in pain, and honestly, all she wanted was for someone to tell her that she would be okay. Her doctors reassured her, and then they asked an unexpected question. “What do you like to drink?” Cindy had never had much of a taste for alcohol, even before she got sick. But she did like a good margarita.

  The team would be awake in the OR all night, and so before the case started, Dr. Camp and David Silver, the anesthesiologist on the team, went out to dinner at the TGI Fridays across the street from the hospital. The doctors knew that the transplant would be risky; with all the bleeding and the prior surgeries, there was a real chance that Cindy would not live. No one should miss a chance to celebrate a transplant, and so they would bring Cindy a celebratory drink beforehand. Fridays serves great big margaritas, the kind that make you feel like you’re at the beach. As it turns out, you can’t order a margarita to go, at least not from Fridays, so the doctors settled on virgin margarita mix, and then th
ey swung by the liquor store to get Cindy a few small bottles of tequila. They brought the ingredients up to her hospital room in a brown paper bag. There, before her transplant, they opened one of the bottles and poured the smooth amber liquor into the margarita mix. Cindy, with the anesthesiologist’s blessing, took a sip. Derek pulled out his phone and took a photo of that moment, his wife in the hospital bed on the eve of her transplant, catheters sticking out of her neck, smiling hesitantly with a brown paper bag and a Styrofoam cup.

  When it came time to take Cindy down to the OR, Dr. Silver promised Derek that he would keep him updated. Cindy managed a joke for the doctors before they put her under—maybe they could do a quick breast augmentation while they were in there? It was dark by then. Derek lay back down on the couch in the family room where he had spent so many nights, waking every hour, panicked and wondering if he had missed a call. In the OR, the surgeon who opened Cindy’s chest with a horizontal incision under her breasts worked to clear the blood obstructing his view.

  Early on Halloween morning Derek woke to a call. The first lung was in, and the surgeons were starting on the second. This would be the final scar.

  While she was in the hospital, Cindy was transfused over 160 pints of blood. That is more than sixteen times the amount of blood in a human body. She would have died if not for this blood, if not for ECMO, if not for the uncannily perfect timing of her transplanted lungs. There are some surgeons who might not have started ECMO if they had known how long Cindy would wait, weighing the possible complications against the chance of a good outcome. But no one could have known that at the outset. So they did start ECMO, and Cindy got new lungs and she did not die.

  Before I met Cindy, her doctors had described her to me as a poster child for ECMO. There is more to this description than one might think. First, it told me that Cindy had come close to death and that she was still alive thanks to high-level medical interventions. Not only had she survived; she was doing well. And she still is. She can walk and talk and think. Her outcome is undeniably a good one. She looks forward to her daughters’ cheerleading competitions and sports games, she helps them with their homework, she and Derek can have entire conversations—days, even—that have nothing to do with sickness. Even the most mundane aspects of life, the fact that Derek has returned to work full-time and Cindy can brush her teeth at night and change into pajamas and wake up every day in her bed at home, are a daily testament to cutting-edge medicine and machinery. Cindy and her medical story are remarkable, the stuff of hospital fundraisers and made-for-TV movies. But being a perfect patient is work, and like celebrity, it is the kind of work that can wind up a burden.