Marcus and Danita first came to see me in North Carolina in the mid 1990s. He stood 6’1”, weighed in at 185 pounds, and had brown eyes and blue skin. Marcus’s first words to me set the tone for our visit: “Listen, Doctor Ely, I’m blue ‘cause I was born with holes in my heart, and I’ve had one foot in a casket since I was a lil’ boy. Many ‘all knowin’ doctors have told me I’m ‘bout to die. They’ve all been wrong so far, but now at 32, I’m wundrin’.” Marcus had cyanotic heart disease, and his skin told the tale. Lips blue as faded jeans, he lived his life deprived of oxygen, with sats in the death-defying range of 60% to 75%. He came to our nascent heart-lung disease program that day with his wife, Danita, to inquire about a new heart and lungs to enable him to help Danita raise their children¾Kristie, Ty, and Ariel¾whom he cherished above all else.
They told me about the scores of doctors who had pronounced his days on earth numbered, and how the family had completely lost confidence in “high-and-mighty” physicians. This made me nervous. Here were a man and woman who had descended that day from a mountain “holler” that bore the family’s name, bringing with them heaps of raw courage and a desire to fight for life. Seeking answers and hope, they had happened upon a green-behind-the-gills, newly-trained transplant pulmonologist. One main question hung palpably in the air: When, if ever, should Marcus have his chest opened and life-giving organs sewed in?
Though normally cool under pressure, I noticed that my forehead had begun to perspire, and beads of sweat formed on my chin and neck. My stomach began to tighten and the room seemed too small for the three of us as I tried to remain poised. I considered Marcus and Danita in their mountain home, Ariel and her 1,050 Barbie dolls stuffed into their closets (a staggering collection), and thought about Ty and Kristie needing a dad during their teenage years. Then my head echoed the vacuum of confidence they had in physicians who had continually been wrong about his longevity. Having lost much of my internal composure, my external composure likewise crumbled. In a wave of flushed confusion, I began sweating as if I’d been sprayed by a hose. In an attempt to shut down this involuntary response, I sought a momentary escape from what seemed a suddenly collapsing examining room.
Upon my return, sporting a dripping wet shirt and mumbling something about the heat, I examined Marcus thoroughly and made some cursory comments: “Your profoundly swollen ankles call for adjustments of the diuretics.” And, “you need to continue the use of the oxygen even though it doesn’t change your sats, and you should avoid physically taxing activity.” These were boiler plate recommendations; they were not what the Cobbs were seeking when they trekked down the mountain that day. My shortcomings seemed so transparent that I was sure I’d added my name to the list of physicians who had failed this hopeful couple. Having convinced myself that our new transplant program needed to start with very straightforward “cases,” I suggested Marcus, whose disease was exceedingly complicated, see another transplant team. And with that, I thought I had successfully ended my awkward relationship with this brave man.
Not long after that fateful visit with Marcus and Danita in North Carolina, my family moved to Tennessee. I didn’t hear from the Cobbs for a couple of years until the day I walked into a clinic room and saw their uncharacteristically sad faces peering up at me. Marcus’s health had gone south, and his lungs and ankles were packed with intractable edema. I was grateful that for all of us this second visit was completely different from our first encounter because several items were resolved. Primarily, all of us knew that Marcus was now unequivocally qualified for and wanted to pursue heart-lung transplantation. Secondly, we were sitting in an established center that could handle someone of Marcus’s complexity. And finally, I had learned to be more comfortable with my limitations as a physician and therefore no longer felt like an imposter. But, one question loomed that I did not understand: Why had they gone to all the trouble of tracking down, across state lines, that bumbling, insecure, sweating doctor they had met in that suffocating exam room? It seemed illogical to me. Danita told me that they walked out that day in North Carolina believing that they’d found the right fit with me. Apparently, it was precisely because I had so candidly revealed (though at the time involuntarily and regretfully) that I did not know the answers to most of their questions. A friend recently told me that monks are taught to “not know” so that they might begin to learn. Certainly, I knew what I did not know, and in the very instance that I thought it had made me unfit to serve, it made the Cobbs want to stick by my side even years later.
After Marcus became my patient for the second time, months of waiting slowly ticked by until the night I called with the news for them to come to the hospital. They flew from Cobb Holler over the Smoky Mountains to our operating room. Following a bloody, 9-hour surgery with numerous predicaments due to collateral vessels as large as ropes, Marcus’s oxygen saturations were soon in the 90s on room air for the first time in anyone’s memory. His recovery was brisk, furious, and astounding. He and Danita soared with ease into the new life of immunosuppression. Marcus looked handsome and healthy yet caught me off guard when only several months post transplant he announced while beaming broadly, “Hey Wes, I want to go parachuting!” He did not pose it as a question.
Years after Marcus’s transplant and following his days of hiking through the mountains, toting kids, and who knows what else, Marcus developed chronic rejection that was recalcitrant to all modifications of his medical care. He slowly drifted back into a state of inexorable decline. Months into this demise, I was standing at a podium in San Diego waiting to speak to a large crowd when my cell phone rang. Danita sighed, “Wes, Marcus is dyin’ and askin’ for you at the bedside.” She had no idea that I was on the other side of the country. I was compelled to try¾the distance was unimportant. “Jesse,” I said to a colleague, “can you give my lecture for me? I need to get back to Vanderbilt.” Marcus had been admitted with a horrendous bout of pneumonia and septic shock, which rapidly progressed despite aggressive antibiotics and resuscitation. Since he had elected not to undergo life support, I felt sure he’d die quickly. I ran towards the airport, dragging a suitcase and tripping over curbs, hoping to catch an earlier-than-planned flight home to see Marcus Cobb alive just one last time.
After boarding the last airplane back to Nashville, I watched impatiently as the miles and states passed endlessly underneath, and I wondered if he could hold on long enough. Once on the ground, I hopped into a cab and sped toward the hospital, letting Danita know I was near. As I approached Marcus’s hospital room, I saw a huddle of people pressed closely around the bed; there was a single space between their shoulders near the door that was apparently being held just for me. I slid into the circle of nine other people and looked down at Marcus, whispering “thank you” for having been called. And that was it. Within just a few minutes, he sauntered quietly out of life right there in front of his beautiful children, his loving wife, and the rest of us fortunate enough to be there. Truly a lifetime later than every doctor had predicted, but it was finally time. His lips had returned to their previous pale blue, and this time there were no looming questions about what needed to be done for Marcus. As for me, more than any other patient in my career, Marcus Cobb continues to keep me grounded in the truth of the statement “when I am weak then I am strong.”
By E. Wesley Ely, MD, MPH
Professor of Medicine and Critical Care
Vanderbilt University, Nashville TN