Twelve Patients: Life and Death at Bellevue Hospital (50 page)

Jared from the Organ Donor Network was on his cell phone outside Room 14 and gestured toward the closed door that led into the OR suite. I pushed open the door, gingerly walked to the front of the OR table, and stood on a footstool beside the anesthesiologist. The music in the OR was a Mozart horn concerto. It smoothed the rough edges of the beeps,
metal-on-metal clangs, and murmurings of the half dozen teams in place. Several surgeons were bent over the table dissecting the small intestine and its blood supply. The heart pumped vigorously covered by a dampened gauze pad, and the lungs expanded and contracted with each whoosh of the ventilator. Several steel tables were parked around the OR table. Each had several large blue plastic containers filled with ice. Teams of surgeons and their assistants from different hospitals fidgeted with receptacles and vacation-size coolers for the organs, which would be prepped and delivered by car, ambulance, or airplane to a computer-matched recipient prepped and under general anesthesia in a distant hospital.

From my little perch on a stool the crescendoing rhythm of the hospital finally caught up to me. We called it “organized chaos” when all the cylinders were firing, from the clinics to the outer reaches of the inpatient units and everything in between. We weren’t perfect, we made mistakes and were frustrated and angry by moments. But I marveled at my colleagues, all of them, who were mission-driven to provide great care to anyone, no matter. It had been an exhilarating dozen-plus years. The woman’s heart beat two feet beneath my surgical mask. My mind went blank.

I got home before I realized we had a dinner that night with the Matta family. Diana was changing into formal wear and getting ready to go when I walked in, depleted from the day. “You’re kidding,” I said as I remembered. Diana smiled. She knew I’d get my second wind. I always did. The Matta family, the entire clan, was back in New York for their annual pilgrimage to Broadway, the opera, the restaurants, the Metropolitan Museum of Art, the Guggenheim, a Yankees game, and endless rounds of shopping. I would have to change into something fancy to get into the restaurant. I had received emailed photos of Diego playing tennis on his titanium leg with his brother Augusto.

We did have a good time. It was great to see Diego doing so well—there was life after a devastating accident. He had a remarkable attitude. His girlfriend Gabriela, now his fiancée, was as gloriously decked out as ever.
His mother, the matriarch, sat in aching primness as she kept an eagle eye on her progeny. But we enjoyed ourselves. Diego gave us a beautiful silver vase, in gratitude for everything I had done for him. From then on, Diana took to calling it the one-legged vase. She can be terribly macabre in her attempts to deal with the pain associated with my profession.

The celebration was also personal. My PET scan the day before was normal. I was down to an every-six-months schedule plus the obligatory monthly endoscopies to check around my throat for a recurrence or a new primary. The fibrotic band around my neck like a dog’s collar was annoying, and the choking on food left me with tears running down my face in the middle of any random meal. My emotional vibrations had equilibrated at a new set point, but I was back with my family and making up for lost time and hurt feelings on a journey no one really had a handle on except Diana. I was still putting pieces together from extreme illness. But I was walking the halls of the hospital, fielding the never-ending incoming issues, and developing new projects and new relationships. I wasn’t done yet.

I realized, as if for the first time the next morning when I arrived in my office, that my window view was completely obscured by the new reflecting-glass building that had been going up in front of me. It had taken out the UN and Roosevelt Island sitting in the East River, leaving only a tiny sliver of Queens. The past day was reverberating in my head and my body as I sat back in my chair for a few moments. What would the legislature decide? How many lives would be affected by their decision? Our patients were like canaries in the coal mines, the living warning signals of the visible and often invisible lethal global transactions and tribulations. All patients came in with their medical issues and a particular history that we assembled, analyzed, and treated. They were by themselves incomplete stories of much larger and deeper events, geopolitical cataclysms, social dislocations, fraying societal contracts, tribal genocide campaigns, overpopulation, and climate perturbations. Just barely scratching surfaces opened up layers without end of diasporas, family sagas, lone narratives of victories and tragedies frequently one and the same.

I was running late. It was time to get ready for the new day.

Because of the sensitivity of the identities of both patients and their families, the circumstances of their lives, and the impossibility of getting informed consent from many who have moved on, passed away, or whose existence is fraught, I have deliberately disguised the identities in this book while leaving intact the essential circumstances of each chapter.

This book has been fermenting for many years. Many more years than I thought when I first sat down to put pen to paper. A writer friend from my days in New Hampshire, after an evening deep in political talk, said to me casually, “Why don’t you write a book?” I thought about it many times over the years, too busy most of the time to get home on time, keep up with my work, spend time with my kids, and think through a complete thought uninterrupted. Fifteen years ago I started to keep handwritten journals, a new one every three or four months. Thoughts, incidents from dozens of diverse sources, travels, conversations with friends, ideas from books, magazines, newspapers, overheard comments, fragments that triggered old memories or that clarified gestating formulations made it into these notebooks, complete with references, diagrams, and color codes. I am omnivorous in my interests so there were no entry criteria. September 11 alone became the subject of a few volumes of collected feelings and the evolution of a signature narrative as the events raced on in directions predictable only in hindsight except for a few clear-eyed Cassandras aware of the burdens of history (and empire). Several hundred pages of
Going Critical
was a first cut I began in early 2008. It was interrupted for over a year by forces beyond my control. Deep into 2010 I sat down again, determined to tell the stories of some of the remarkable human beings I have been privileged to take care of over three decades.

Several people asked me, “How did you decide who to put in the
book?” I was always interested in my patients’ stories. Illness was only a part of the story for each—never the entire story or even the most important one. After all, patients are not coterminous with their illnesses. For me what has always been the most important part of any story, however dramatic and compelling, is the story behind the story, the backstory. For me history, sociology, and anthropology have been essential complements to medicine. Only within a multidimensional context are a patient’s stories understandable. Teasing out the ripples of the past and the blowback of apparently remote events is as satisfying as a complex diagnostic dilemma. Just why is this Fulani-speaking Mauritanian sitting on the TB ward? So my answer was that I chose the patients that illustrated different aspects of what are arguably among the critical contemporary issues in our society—those with global implications. The lens, of course, is Bellevue Hospital. By selecting a few cases out of hundreds, if not thousands, my hope is to illuminate through real lives the effects of social, political, and economic forces like moving tectonic plates, the structural elements that are so often lost in the discussion of an individual case. Most disease as we understand it is the product of these forces interacting with the genome and the episome, making nature and nurture a quaint concept.

This book literally has a cast of thousands and has been informed by innumerable conversations and events over many years. To all of the many patients I have been so fortunate to meet and to get to know under extreme circumstances, and to their families and friends, I cannot thank you enough for your generosity and remarkable resilience, which I only glimpsed through a small and often transient opening in a life.

The public hospital system in New York City is blessed with a remarkable group of dedicated individuals. I can only thank everyone who has graciously worked with me under the difficult and stressful circumstances organizing and delivering medical care in always “interesting” times.

Bellevue has an enormous number and range of physicians, nurses, social workers, aides, secretaries, technical staff, and administrators, all impressive in talent and energy. I know just about everyone and
have benefited immensely from the support and sheer delight of working with a professional group of dedicated providers of care at every level. I would like to mention some of the people whose conversations and commentaries assisted me in deepening my thinking about what I was really about and what was happening to our patients. Out of the multitude, Lynda Curtis, Machelle Allen, Steve Alexander, Aaron Cohen, Lin Lombardi, Moftia Aujero, Don Lee, Howard Kritz, Ivy Natera al-Lahabi, Lindora Dickenson-Walker, Irene Torres, Liliana Rodriquez, Keith Kerr, Karen Hewitt, Barbara Else, Steven Bohlen, Minerva Joubert, Jean Carlson, Hannah Scherer, Ines Suarez, Carla Brekke, Danielle Elleman, Peggy McHugh, Benard Dreyer, Alan Mendelsohn, Linda van Schaick, Shona Yin, Mary Jo Messito, Keith Krasinski, Melissa Castro, Lauren Campbell, Amita Murthy, Ming Tsai, David Keefe, Greg Ribakove, Norma Keller, Mayra Mercado, Mera Djokic, Nafija Musovic, Belinda Nieves, Esther Ammon, Pam Pamamdanan, Sally Jacko, Omar Bholat, Spiros Frangos, Chris McStay, Marion Machado, Laura Evans, David Chong, Jeff Gold, Eric Liebert, Bill Rom, Judy Aberg, Dena Rakower, Alma Lou Brandiss, Cora Larroza, Manish Parikh, Ken Rifkin, Levon Capan, Tom Blanck, Leon Pachter, Joe Zuckerman, Noel Testa, Nancy Genieser, Mike Ambrosino, Nirmal Tejwani, Budd Heyman, Frank Spencer, Aida Yap, Rob Todd, Steve Ross, Jennifer Wu, Mary Lynn Nierodzyck, Jen Havens, Jan Nelson, Fadi Hadad, Romina Ursu, Pat Fonda, Susan Cohen, Rob Smeltz, Rob Roswell, Angelina DeCastro, Glenn Saxe, Melissa Massimo, Anil Thomas, Samoon Ahmad, Marilia Neves, Danielle Kaplan, Bob Hoffman, Elizabeth Ford, Roslyn Mayers, Randi Wasserman, Susan Marchione, Harold Horowitz, Karen Hendricks-Muñoz, Max Koslow, Steve Russell, Neal Bernstein, Mike Attubato, Lisa Park, Joan Cangiarella, Maria Aguero, Rebecca Weis, Kate Zayko, Edith Davis, Kate Hogerton, Kim Tran, Elias Sakalis, Rich Cohen, Miquel Sanchez, Helen Javier, Amit Rajparia, Diana Voiculescu, Diana Han, Cherry Siriban, Umut Sarpel, Asher Aladjem, Vivian Sun, Laura Alves, Aaron Elliot, Gary Belkin, Nathan Thompson, Ana Peña, Laura Furtansky, Manuela Birto-Fortes, Neal Agovino, Marcy Pressman, Mirian Villar, Alyssa Tsukroff, Richard LaFleur, Hawthorne Smith, Allan Keller.

Life being what it is made me a patient in my own book, not by design, but by chance. I was the recipient of the most professional caring support any patient could hope for from a team that I knew and respected, making it easy to choose to be treated by the “home team.” I never had to worry about trust, competence, or mutual respect. Thank you, Bobby Bearnot, David Hirsch, Nick Sanfilippo, Silvia Formenti, Beverly Smith, Stuart Hirsch, Jamie Levine, Cathy Lazarus, Bob Glickman, Deirdre Cohen, Sally Habib, Dan Roses, Rena Brand, Kepal Patel, John Golfinos, Bill Cole, Bill Carroll, Leon Pachter. You cannot find better doctors or better people.

Turning an idea that could have been three or more books into a focused manuscript took some great advice and editing. I am very fortunate to have both extremely capable and fine people as agents in Jim Levine and Lindsay Edgecombe. They had the imagination to see where this book was coming from and where it could go. My editor John Brodie helped a new writer stay focused and not feel that vital organs were being excised when a cut was suggested. There would be other opportunities.

It has never been clear to me exactly where my work begins and ends or for that matter why I should be worried about that imaginary line. This is also true for my amazing polyglot friends, who are as immersed in their life’s work and work life as I am in mine. We all share enthusiasm for exquisite meals, theater, movies, a worship of great books, incessant travel to distant lands, telling stories and hearing tales about battles fought and won, lost, or drawn. We learned to celebrate often since you never know. To Faye Ginsberg, Fred Myers, Leo Spitzer, Marianne Hirsch, Barbara Kirshenblatt-Gimblett, Max Gimblett, Alexis Jetter, Annelise Orlick, Silvia Spitta, Gerd Gemunden, Renato Rosaldo, Mary Louise Pratt, Diana Raznovich, Jesusa Rodriquez, Liliana Felipe, Mario Bronfman, Sylvia Molloy, Catharine Stimpson, Liz Woods, Eduardo Zarate, Milada Bazant, Margo Krasnoff, Sue Varma, Alyshia Galvéz, Josana Tonda, Ben Chu, Donna Moylan, Sandy Petrie, Nancy Miller, Lorie Novak, Arnie Arnison, Ed Fishkin, Marcial Godoy, Teresa Anativia, Marléne Ramirez-Cancio, Mary Brabeck, Mike Brabeck, Richard Schechner, Carol Martin, Nina Bernstein,
Andreas Huyssen, Agnes Lugo-Ortíz, Diane Miliotis, David Brooks, Susan Meiselas.

My brothers, Dean and Josh, and their families have been supportive and rooting for this to happen. My wife’s family has been a fan club for a long time between trips to Antarctica: Susie, Jim, and Erin, plus the Canadian side of the family, Randy, Wendy and George, and Marga Taylor. The Zantops, Veronica, Eric Ames, Max and Isaac and Mariana, Dan, Mia are extended family. We go back a long way. My parents passed away some time before this book was written but they are very much a part of every page and every story.

My family came to my rescue in many ways. When I was too doctorly they grounded me in their reality. As I became a little wiser, I realized increasingly what I did not know and learned to go with the flow of Alexei and Marina becoming warm and caring people, great friends deeply involved in so many things with love and passion. Our dinners are legendary, and they now are breaking in the next generation, Mateo and Zoe. They generously watched me disappear for a year to complete this manuscript—and not long after I had disappeared down a dark hole, they helped pull me out of it. Gladys and the Lowe family have been warm additions to an expanding family. Diana has been my life partner for many years. She read and reread the manuscript many times and with her amazing critical eye made innumerable additions and subtractions that were based on her own deep knowledge of where I had been, who my patients were, and what their stories meant in the deepest and widest sense. She has been part of everything I have done for a long time with her generous love through everything.