You Can Stop Humming Now

by Daniela Lamas

  The video did not sugarcoat. There were no transplant recipients extolling the virtues of transplantation. The time for that would come later. Here, patients learn that they will take more than a dozen different medications daily. They’ll need a full-time caregiver for at least the first few weeks after transplant because they can’t be alone, not even while asleep, and they’ll need others who are willing to commit their time to pick up food or drive to appointments. They learn that in most cases, the primary goal of lung transplant isn’t to make life longer, but instead to improve its quality. Nearly half of all lung transplant recipients die within five years. Moving forward would mean exchanging a known set of problems for an unknown set that we all hoped would be better but understood might not be.

  When I first learned about this clinic, I had thought my job would be to make sure that my patients knew precisely what they were getting into before they moved ahead. To some extent, that’s the right idea. We give survival statistics in the video, explain how many medicines our patients might have to take, and warn them and their families that for the first months or even a year or longer, recovery can be harder than they would have ever imagined. We tell them that even if they are facing complication after complication and their bodies do not feel like their own any longer and they have not been home for months, their doctors will encourage them to move forward until they have reached the true limits of possibility. They have a responsibility not just to themselves, but also to the transplanted lungs that now live inside them.

  If they have specific questions about the nature of the surgery or the side effects of the meds, we answer those or we refer them to someone who can. Most important, I think, beginning with that video, we explain that transplant is not a panacea. None of the things we do are, not an ICU stay or an implantable device or a state-of-the-art medication. If our patients think that modern medicine can make things perfect, they’re doomed to disappointment. What we offer is never a true cure but a different sickness, albeit a preferable one, we hope, to the one they are battling. So we lay out these broad expectations. We realize that they might not even really hear them today, on the first visit. There will be countless conversations over the coming weeks, months, even years. But if we do it well, maybe there’s something familiar when they hear it again. Maybe that’s the best we can do.

  The video ended. The group was quiet. One of the clinic staff led each person down a hall and into an examining room, and I left to scan their charts. I gathered some details about my first patient: she had a dog; her adult children lived across the country; she smoked marijuana when she was in college but just a few times, because it didn’t agree with her; she ate a scoop of ice cream for dessert but not every night; and she had been on oxygen for four years. I tried to hold those little details she had chosen to share with us in my head so that I would make her feel as though this doctor she had never seen was someone she could trust.

  I glanced at my watch. I had been reading slowly, and I was seven minutes late. I thought of her sitting in the examining room for those seven minutes, uncomfortable and nervous, perhaps wondering if she should just leave, and I told myself to hurry. I gathered my papers, doused my hands with Purell, and swung open the door. My patient was looking at her phone. She began to stand when I walked in, but I could see the oxygen tubing already half tangled around the legs of the chair, and I told her not to worry. I shook her hand. Mine was cold, and hers was hot and a little bit sweaty from waiting in the stuffy room.

  “I’m Dr. Lamas. It’s good to meet you,” I said. “The way this clinic works is that we talk about what’s going on and I’ll ask you some questions, and then I’ll examine you and we’ll talk about transplant and see if moving forward with the evaluation is the right thing for you.”

  She nodded.

  I asked her to tell me her story. Though I had just read through her notes, I preferred to hear it from her. She hesitated—telling it might take a while, and she didn’t want to use up too much time—but I assured her that she should go ahead. We weren’t in a rush. So she took a deep breath and started to talk. She told me about the cough, the visits to doctor after doctor; the misdiagnoses of asthma, reflux, and allergies; the inhalers, the pills, and the oxygen; and finally the diagnosis of pulmonary fibrosis that had landed her here. As she was talking I listened, asked questions, nodded and typed. Whatever I wrote would follow my patient in her medical record, copied forward from note to note, perhaps forever. I would try to get it right.

  “So, do you think I need a transplant?” she asked me.

  Even though she had been on oxygen for years, and she could see the dial cranking up and feel her strength winding down, the entire idea of being evaluated for a lung transplant must have still sounded preposterous. Perhaps she hoped that I would take one look at her and tell her that she didn’t belong there at all, and that she should come back when she was actually sick. But instead I told her that for people with her disease, we generally recommend starting an evaluation for transplant as early as possible. So the answer was yes, she would likely need a transplant. Even though she didn’t need it right now, she might in the future, and her doctors had done the right thing in sending her to our clinic. “With your disease, your lungs could fail quickly, and we don’t want to get caught in a situation where we have waited too long,” I explained.

  “Oh,” she replied.

  “What other questions can I answer?” I asked.

  I thought she might want to know what would happen if she never got a transplant, and if she did get new lungs, whether she would be able to tolerate the surgery, and what her life would be like afterward. Or maybe she was wondering whether her husband would be able to take care of her without resenting her disease or, worse yet, resenting her for having it. Perhaps she was thinking about the house, and how they would be able to keep it if her husband had to leave work; or if it was too early to tell her children what was going on, and when she did tell them, how she would be able to do that without pressuring them to drop everything in their lives and come to Boston. Later on, when she understood more about the course her disease might take, she might want to know about the limbo of ventilator dependence, whether she would regret her decisions if that’s how things ended up, whether she’d be angry. I imagined that even though she wished I could answer those questions for her, it all felt unbelievable, so far away. She was just at the beginning. So she said no—thank you, no more questions right now.

  We moved forward. Regardless of what choices she would ultimately make, this was the only direction we could go. I helped her up onto the examining table. She slowly unbuttoned her shirt so that I could place my stethoscope on her back to listen to her lungs. I noticed as she unbuttoned that the skin on her chest was smooth and unmarred by the scars of surgery. I held and inspected her hands, recording the way that years of low oxygen had left her nails curved and misshapen. I traced the shape with my fingers. I pushed up her pants to feel her shins for swelling, and palpated the joints of her arms and legs. Then I sat back down. There was nothing in her exam or her file that should keep her from moving forward with the evaluation. She wasn’t obese, she wasn’t hooked on narcotics or high-dose steroids. And she had an incurable lung disease. I told her that she would need to bring three people with her for an hour-long meeting when she came to the hospital overnight for all the tests. These people would make up her support team. She told me this wouldn’t be a problem.

  Then I was done. It would take time to grow accustomed to this part of my job. I left the room to review my patient’s history with the pre-transplant nurse who would be her point person moving forward. She was smart, funny, and kind, and I knew my patient was lucky to have her. She would schedule all the necessary testing. Quite possibly, I would never see this patient again. My role was just to meet her this one time, at the gates, to lay the foundation before she launched into the unknown.

  Shortly after my first session in the transplant evaluation clinic, I started my atte
nding rotation at Spaulding, the long-term hospital where I had first met Charlie Atkinson. The Spaulding shifts are less sought after than those in the intensive care unit, so they are often given to first-year attending doctors like me. Spaulding is a good place for a writer to gather stories, that much I knew. But I suspected that it would also be a rich place for a doctor to better understand the limits of prognostication, to see what life actually looks like for patients who have not died but are not yet truly better, either: these survivors in the middle.

  I had grown used to walking those halls as an observer and writer, so it felt a bit strange, that first day, to enter Spaulding as a doctor. It was familiar, but in a way it was foreign, too. I printed my patient list and began my morning rounds. A sign on my first patient’s door said that I had to wear a mask and a yellow gown to enter, so I dutifully donned the protective gear. I knocked—which I would later learn drove my patient crazy, since she was on the ventilator in the morning and as a result couldn’t make herself heard even if she didn’t want someone to enter—and was met with silence, so I stepped in. Cards covered the walls like wallpaper. My patient, a woman in her early twenties, sat in a chair next to the bed in shorts and a T-shirt, with her thinning hair done up in two braids.

  “You don’t have to wear the mask,” she mouthed, after my introduction. Even though her tracheostomy tube was connected to the ventilator, rendering her voiceless, I was relieved to find that I could easily read her lips. “Unless you have a hacking cough or, I don’t know, are planning to lick me or something.”

  I smiled. “Probably not,” I said.

  I placed my stethoscope on her chest, listened to the air move in and out of her scarred lungs, and confirmed that she would try to breathe without the vent later that day, as she did each day with intermittent success during her physical therapy session. Then I checked her name off my list. I had nearly thirty patients to see. On the first day, all I could do was get to know a little bit about each of them.

  My roster included a gentle, childlike older woman who was on too much oxygen to be able to go home, and who spent her days working diligently on adult coloring books. Her roommate on the other side of the curtain was a sarcastic, highly anxious New Yorker with lung cancer whose darting eyes and grimace made clear that she was furious she wouldn’t be able to talk until we removed her tracheostomy tube. Down the hall from them, an obese man whose obstructive sleep apnea left him hooked to a ventilator at night told me that I was beautiful like a movie star and asked me each morning whether I was married (“Still not married,” I said, long after it had stopped being funny).

  There were also patients who couldn’t interact in a way that I could understand at all, those who had suffered major brain injuries or who were profoundly delirious as a result of recurrent infections. Some of these people had family members who visited every day and sat by the bedside; others spent their time locked in endless solitude. One ventilator-dependent woman had turned eighty-five there, in her room at the end of the hall. She had been transferred from a rehab hospital that had closed down, and she was never going to be able to go home. Likely, there was no longer any home for her outside these walls. She passed the time doing electronic jigsaw puzzles, with an occasional visit from her son or a trip outdoors once every few weeks when the respiratory therapists had time to take her. Even on my lightning-fast rounds through my patient list that first day, I think I knew that if I let myself feel deeply for each of them I might drown. I definitely would never get to finish my notes.

  But the young woman I saw first drew me in. She spent around six hours each day off the ventilator, and during that time I could hear her voice. It struck me as a cruel irony that such a talker spent so much of her day unable to make a sound. I liked listening to her. She made me laugh with her candid, perceptive observations about the other doctors and nurses and with stories like the one about the running bet she’d had with her mother over whether she could get a particularly serious doctor to crack a smile. (It had taken months, but she’d succeeded. After all that, she couldn’t remember precisely how.) I spent more time in her room than I had to, and as the days passed she told me her story. She had been a college student who felt kind of run-down and assumed she had a cold or maybe mono, which turned out not to be a cold at all, but acute leukemia. She had to leave school to get started on urgent chemotherapy. She had gone into remission, even returned to school, thinking things might be okay after all, but she had relapsed some months later. Now, more than five years had passed, and her cancer was gone. She’d been cured of her leukemia, but she was left with a progressive lung disease as a long-term side effect of her successful treatment.

  “Pretty crazy, huh?” she asked. I nodded. I didn’t know what to do with stories like these, other than to shake my head and begin to worry that each cough meant I had lung cancer or each freckle on my leg was actually an early melanoma. “There’s a lot more to it. Those are just the bullet points,” she told me. “But it’s still more than you’d get from the chart.”

  It was. I asked her how she spent her time. She responded that she had tried it all. There had been a Netflix period, but she’d tired of that. She surfed the Internet, looked at what her friends were up to on Facebook, and when she was feeling better, she had even gone through a knitting kick. She was running out of ideas. Often, when I came into the room I found her sitting on her chair, looking at her phone or out the window, daydreaming. A few of her close friends visited from time to time, and if she was off the vent she talked with them as much as her breath allowed. Otherwise she mouthed and gestured so they could understand. A week before I met her, she had been able to go outside, for the first time in months. She and her physical therapist had walked down the street to a medical supply store to try out new rolling walkers. It was exhausting, but good.

  One morning, when I came in on my daily rounds, she asked me a question. She wanted to know if she was on life support. The question took me by surprise and I paused behind my mask. I wondered if she would say more, if she would ask me what that meant and whether she would ever get home, and I would have to tell her that I hoped so but couldn’t promise it. She was quiet, though, so I replied, “Well, you need the ventilator, which is a form of life support. So I would say so.…Why do you ask?”

  She gave a small shrug. “I was just wondering, but that’s what I thought,” she mouthed. “I’m connected to life support through the hole in my neck.”

  She then shifted her body forward in her chair and pulled up the back of her T-shirt so that I could examine her as usual. I felt her question and the weight of its meaning sit there, heavy and silent, as I placed my stethoscope on her back and listened to the quiet sounds of her breath.

  On a Friday evening a few days later, I came in to tell her about a small change we were making to her ventilator settings for the night and found that her room had been turned into an Indian buffet. Her parents were there along with one of her friends, and I hesitated in the doorway. Ideally, I’d let them eat and come back, but it was already getting late.

  My patient looked in my direction, beckoning me into the room.

  “Help yourself,” her mother said, and offered me a plate. I shook my head, explaining that I just needed to update my patient about the ventilator settings. I would be quick. “We’re planning to go up a little on the pressure on your vent tonight,” I told her. We hoped this might help her spend more time off the vent during the day. She nodded, clearly distracted, and then gestured to the food and mouthed, “Okay. Have some.”

  I paused. I have never been sure of the protocol in these situations. As I hesitated, I found myself listening to the familiar sighing sound of my patient’s ventilator. I could still hear it in the background despite the dinnertime chatter. Thinking about life support, about the question my patient had asked me that recent morning, and all the many questions she had not asked, I took the plate. “Thank you,” I replied.

  I lowered my mask to have a bite. It was the f
irst time I had breathed comfortably in that room. The food was warm and spicy. I stood against the wall with my mask around my neck, surprised by how nice it all felt and hoping I hadn’t spent too long interrupting their dinner, before I said goodnight.

  Back in transplant clinic a few weeks later, I was walking through the waiting room to see my first patient of the day when a young woman in a wheelchair stopped in front of me. She had short hair and big hoop earrings and was neatly put together in a silky blouse and dress pants. I didn’t know who she was at first, but when she spoke I recognized her voice immediately. She was a woman I had first met in the hospital some months back, when she was waiting for a transplant. At the time I had talked with her a bit about what it was like to live while waiting. She told me that she watched a lot of television, tried to read but couldn’t focus, and that her mother sat at her bedside every day, leaving only to buy her cards and trinkets from the hospital gift shop. At first she didn’t seem to mind my being there, so I fell into the habit of stopping by every now and again, mostly in the afternoon or evening, just to sit in her room and hope that she might tell me more about her experience. But as the weeks passed without a transplant she grew more withdrawn and less animated. I began to worry that I was burdening her with my presence, and my visits became less frequent. Then, a surprise—one spring morning the surgeons entered her room with the news. Lungs.