As the laughter quieted, there was a break in our conversation. In the moment of stillness, I found that I was curious about Van’s pulse. I asked him if I could feel for it, and, seemingly amused, he offered his hand. I placed my fingers on his wrist, where I am used to feeling the rhythmic pulsations of the radial artery. Because the device moved blood through Van’s vessels at a continuous, stable rate of flow rather than the pumping of a normal heart, I couldn’t feel a thing. It was somewhat disconcerting, I admitted, and Van smiled. He and his family joked about this kind of stuff. When Van got on his sisters’ nerves, they liked to tell him that he’d better behave or else they would unplug him.
At first the goal had been to get Van a new heart. His doctors had told him that a transplant might be possible (his device could be termed a “bridge to decision”) but that he would have to wait because he’d been smoking cigarettes right up until he got his VAD. Van wanted a transplant, or at least he thought he did. A transplant would allow him to live without batteries and, perhaps more important for him, would let him go swimming and teach his grandson how to fish. For the early months after the device was implanted, he returned to the clinic every two weeks so that his doctors could check the machine and continue the work-up to see if he could become a candidate for a new heart. Donna generally did the driving, and it took at least an hour each way on a good day. As much as the frequent doctor visits, the hours on the road and in the waiting room, and the promise of test after test chafed, Van stuck with it.
It seemed to pay off. He was ultimately listed for a transplant, but as he waited for his organ to come, his emphysema began to take center stage. He hadn’t smoked a cigarette since before the hospital stay when he got the VAD, and he puffed on his inhalers twice a day, but his lung function continued to decline. He was still too winded to get back to work, not because of his heart now but because of his lungs. And he learned that if his lungs didn’t improve, he might not be able to get a new heart after all. He went to more appointments, refilled more prescriptions. He saw a new pulmonologist who reviewed his records and told him, simply, that there was nothing he could do to help. Van was frustrated and angry, but he couldn’t change the facts, and at a clinic visit his doctors gave him the news: There would be no heart transplant. He would receive an official letter a few weeks later. “They decided I was off the list,” Van told me with a shrug.
Donna took the news hard. She was devastated. She had been with Van through everything. She had kept a diary of the events of his hospital stay and had essentially lived at the hospital with him during the long days and nights of complications after he got the VAD, when he had to return to the OR and she was afraid that he might die. She’d driven him into Boston for his clinic appointments and had sat at the wheel one evening when his controller kept beeping and they had to rush to the hospital to figure out why. Despite all of that, he was off the list and there was nothing she could do. “It was a tough couple of days even for me to accept it,” she told me of the transplant decision.
But Van reacted differently. He was not the sort to dwell on things, nor was he a man who allowed himself to wallow in feelings of regret. He didn’t want to wish for something that wouldn’t come, only to end up disappointed. I asked him what it was like to learn that he would spend the rest of his life with this machine, that the equipment would be with him until he died, and that he would never be able to shower the way he liked or go fishing. I wanted to know if it had been hard to come to terms with this. To the contrary, he told me. When the transplant was a possibility, he’d been at the beck and call of the clinic. He had to drive in for tests when they told him to. They’d even forced him to get a colonoscopy. He had wanted a new heart so that he could hunt and he could fish, but that wasn’t going to happen. Without the uncertainty of a different future that might never come to pass, he could focus on accepting his life for what it was. “It was the best thing they did,” he said of being taken off the transplant list. Sure, he still had to come into Boston every few months, but it was as if a cord had been cut, and in a way he was free. “It had come to the point where they were controlling my life,” Van said. “They owned me, and I don’t like being owned by anyone. Now I could live.”
A few weeks after he learned that he would not get a heart transplant, he decided to go to the beach with his family. It would be the first trip he’d taken with the machine. He and his family rented seven rooms in a hotel by the water in Maine. They had a cookout one night, all of them, Van and his mother and his sisters and his kids and their children, warmed by the sun and the breeze off the ocean. It was a good weekend.
Perhaps I’d gotten it wrong. I had thought of life with the device as a kind of purgatory. For some, this is the case. I had spoken with another patient who lived with a VAD until he received a heart transplant, and he told me that every night when he had the VAD, he prayed that he’d wake up in the morning, and every morning, he prayed he’d make it through the day. He didn’t hate the VAD itself, he’d made his peace with it, but he found himself tortured by this external reminder of his mortality. He knew he was being kept alive by a machine, he could touch it and feel it, and he knew, too, that machines break. He could think of little else. Yet for Van, purgatory wasn’t the cord that led from his chest to his battery pack. It wasn’t the prospect of life with a VAD without the promise of transplant. It wasn’t the idea of the alarms that could awaken him at night. For Van, it was the waiting, that and being tied to the clinic. In contrast to what I would have assumed, that had been the worst part.
Back when he got the device, Van asked his doctors how long he could be expected to live with it. At that time, their longest-living patient had gone for seven years. When we met, it had been three years since his own machine had been implanted, but Van didn’t seem too focused on counting down the time. He hadn’t expected any of this to happen—not the heart failure, and surely not the idea that he would be living with a VAD—and now that it had, he didn’t know how long the pump and the batteries and the controller would continue to give him the life that he wanted. It would be good to have more years. He could spend time with his grandson and get to know the boy as he grew up. He could continue to have fun with his sisters, crashing their girls’-night-out dinners. But the limitations of current technology made the future feel especially uncertain. Perhaps it was his time in AA, but somehow he was able to recognize this unknown without being paralyzed by it. And then he could move on.
“I don’t care if I die today. I live each day for each day,” he told me over the phone one morning. After I visited Van at his home, we had continued to talk on the phone from time to time. In the midst of our conversation that morning, he got a call from the clinic updating him on his labs; the dosage of his blood thinner could remain stable for the week. “This isn’t even about me anymore. This is about the whole family. A lot of people have put a lot of hours and a lot of effort into keeping me alive. I’m going to enjoy it.”
And he had been enjoying it. With the power of the VAD, Van had been able to return to the camper he’d started before his health went downhill. Working a little bit each day, he used plywood to build the camper’s body, eight feet long, four feet wide, and four feet high. He put in windows, an air conditioner, and two doors, and he covered it all with plastic siding. A few weeks after he finished, Van, his mother, his sister Donna, and her husband piled into his minivan with the camper hitched to the back, to travel up to his brother’s house in the White Mountains in New Hampshire. He brought his battery charger with him and carried a generator, too, in case he needed to charge while he was on the road. He stayed on battery the whole weekend rather than plugging into the wall at night, opting instead to make sure he changed his drained batteries for fresh ones every twelve hours. This let him sleep outside, in the camper he had built. It was peaceful out there, and he slept easily. It was, he said, a “pretty decent” time.
“Sometimes you have a good day, sometimes you have a bad day,” he said dur
ing another phone call, when I asked him how he was doing. I had come to look forward to Van’s calls. I found myself trying to see his life the way he did, without that anxious need to know what was going to happen or the inclination to look over his shoulder with regret. On that day things were good, “better than good, wonderful, even,” he told me, and I was surprised to hear him sound almost effusive. He had recently decided to start working out and had picked up an exercise bench, which he used to lift weights. For some cardio, he had honed a routine of jumping jacks without jumping and twists from the waist. Already he had lost weight and felt that he could move around better. In fact, when we talked, he had gone to see his pulmonologist a few days before and had learned that his lung function had actually been improving. I thought immediately of transplant when he told me that, wondering if the option could come back on the table. Hesitantly, I asked whether that was on his mind, too. “It’s always a possibility,” he acknowledged. “But I’m not going to wrap my life around it. It’s been so long now, I’m fine just the way I am.”
He had even gone on a few dinner dates since the VAD was placed. He wanted to meet someone, but struggled with the best way to explain his device to women. “When they find out I’m running around with batteries, they kind of shy away,” he told me with a chuckle. It occurred to me, as we talked about exercise and dating attempts, that even in the course of the months we had known each other, Van had changed. I wondered if part of this increasing positivity was his shifting relationship with the realities of the VAD. I asked him about this, and he agreed. “It’s just a part of my life now, it’s an everyday thing,” he said, referring to the VAD. “I’m more comfortable with it, and that’s it, you know?”
This sense of comfort had allowed him to start working on another project. The camper complete, he had decided to fix up a fourteen-foot speedboat that he would use to go fishing on a lake near his home. It was a big lake, some twenty-six miles across, and it could be tough to catch fish there because you had to know where they were hiding. Van had learned to fish as a child with his father and siblings. They’d spend the days outside, boating and fishing, and the nights camping. Van’s father would bring his guitar, and the family would have a sing-along around the fire. It was a good way to grow up and a tradition he had tried to replicate for his own children. Years had passed since he had last gone fishing; his doctors had warned him time and time again about getting too close to bodies of water with the VAD. But when the summer came, he would relearn the best spots in the lake. He would drop his fishing line out of the boat, throw his feet over the side, and relax and enjoy the day. He’d come home with some salmon or rainbow trout or perch, and cook the fish on his George Foreman grill. He’d picked up a little fishing pole for his grandson, too. He wanted to teach Dylan to fish, but he would make sure someone else came along, too, for safety. I had rarely heard him this animated. And I began to understand that it was worth it for him to loosen his shackles and break the rules.
“If I’m just going to sit and live in fear, I’d rather be dead. I’ll take my chances,” he told me over the phone. “Life as I know it, it’s how it is right now. When the pump goes down, I go down. When you unplug me, I go down. But I don’t have time to worry about all that.” It had been more than five years since his heart had started to fail and over a year since he’d been told he wouldn’t get a heart transplant. He had a hole in his stomach and a vest to carry his batteries and the elastic band his sister had fashioned to hold the controller around his waist and the ever-present threat of a stroke or a bleed or a problem with the machine. Most likely, there would be no transplant. This was the way that he was going to live until he got sick, or until something was broken that could not be fixed. There are those who might not choose this route, but when faced with a set of ultimately unimaginable alternatives, Van had. And that afternoon, he was going to take a quick rest, and then, if the weather held up, he was going to take a ride to Walmart. I smiled when he told me what he was planning to get there—rope, an anchor, another life jacket, and a horn. Summer was coming, and Van wanted to be ready to take his grandson fishing.
4
Nightmares After the ICU
It was time for our morning exam. We clustered around the bed to observe our patient. His face was puffy from fluids, and he was tethered to the bed by plastic tubing, soft restraints, and intravenous lines. One of the other residents placed a stethoscope on his chest, listened to the sounds of his heart and his lungs, and nodded. Better every day. I laid my hand on his abdomen and pushed gently. The man’s eyes darted and his body contorted as he struggled to free his arms from the restraints and move them toward his breathing tube. I reached reflexively, grabbed his hand, and pressed it firmly down into the bed. He grimaced.
I turned to address his wife, who was standing in the doorway. We had grown used to her presence over the past few weeks. In the beginning, when bacteria flooded her husband’s body and we were unsure whether he would live or die, she had barely left his bedside. She must have said goodbye to him on that first night, and if not then, surely the night after, when one of the interns whispered her name into the darkness of the small hot family room where she was half sleeping to tell her that her husband’s oxygen levels were dropping. In those early days, he was the first patient we saw on our morning rounds and the last patient we examined before leaving the hospital for the night.
But the days passed, and slowly he started to get better. Sicker patients took his place in our morning rounding order. Now he was close to being able to breathe without the ventilator. He was clearly delirious—when he woke, it was to flail in the bed and only intermittently follow our instructions. I didn’t focus on that, though; he would not die, nor would he linger in the purgatory of long-term ventilator dependence. This patient was lucky. He would leave the hospital weak but alive and intact, breathing on his own, without question a “save.”
Yet for my patient, it was far from over. In his mind, I learned much later, he had spent the days since his intubation railing against invisible captors. He believed that his house had been burned to the ground and his children made to work as slaves. He felt himself to be hog-tied, naked and cold. He saw blood dripping down the walls. These images would follow him from the intensive care unit to the general medical floor and out of the hospital to his home, where they would come to him unbidden as nightmares when he tried to sleep and as flashbacks during the day.
“Looks like he’ll be able to breathe without the tube soon. We’re hoping to be able to take it out tomorrow,” I told his wife. She sighed, relieved. “Did you hear that?” She looked toward her husband, who was kicking his legs under the hospital sheets. “The tube is going to come out!” She turned back to me. “He’s going to be okay,” she said slowly, as if savoring the sound of the words. I nodded. I didn’t have an inkling of the battle that was being waged in his mind, nor did I have any idea of how that might change him. I didn’t wonder whether he would be able to return to work, how long it would take to get to that point, and what his life might be like if he could not. He would be okay. That was the truth, as far as I knew it. And it would remain that way until I met a woman named Nancy Andrews.
It was the early 1980s in Baltimore, more than two decades before I ever set foot in an ICU, and a twenty-year-old art student named Nancy Andrews needed an eye exam to get a new pair of glasses. Strapped for cash, she headed to the ophthalmology clinic at Johns Hopkins, where she’d heard she could get her eyes examined by a doctor in training for as little as thirty dollars. The doctor there peered into her eyes, looking behind her pupils at her lenses. Oddly, it appeared as though they had shifted from their expected location.
“Your lenses are dislocated,” he said. Had she ever been hit over the head? That would be a convenient explanation for dislocated lenses. She hadn’t. The young doctor looked at his patient, taking in her slender build, her long fingers, her flexible wrists. There was something more going on.
At the end o
f the day, Nancy found herself at the hospital’s genetics center awaiting a diagnosis. When it finally came, it confirmed the suspicion that had troubled the doctor at the eye clinic: Nancy had Marfan syndrome.
Marfan’s—named for French pediatrician Antoine Marfan, who first described the condition at the turn of the twentieth century in a young girl with long fingers and skeletal abnormalities—is a disorder of the connective tissue that holds together the body’s skin, muscles, and organs. Those with this diagnosis are prone to problems that range from the relatively benign, like lens dislocations in the eye, to deadly defects of the aorta, the large vessel that carries blood from the heart to the rest of the body. Nancy was quickly subjected to test after test. As if the diagnosis itself weren’t jarring enough, she then learned that she had an aneurysm at the base of her aorta. If left unaddressed, Nancy’s doctor warned her, the weakened vessel could rupture with disastrous, and potentially fatal, consequences.
She felt completely healthy. She was active. She rode her bike all around the city and even had enough energy to work an extra job washing dishes. Now, with this diagnosis, her good health was just an illusion. Shaken, Nancy asked her doctor how he suggested she make sense of the seismic shift in her reality. He told her that any of us could die at any moment, really. “This is different,” she replied. “You’re telling me I have a ticking time bomb in me.” She didn’t get an answer.
With a prescription for blood pressure meds to keep the growth of the aneurysm in check, she carried on. What other choice did she have? As planned, she traveled to England for the year to study. But when she returned to Hopkins in the fall, she saw her doctor again. He told her that the aneurysm had now grown large enough that the benefits of surgery to repair it outweighed the risk. So at twenty-one, Nancy agreed to undergo open-heart surgery to replace the diseased root of her aorta and her aortic valve with a polyester graft and a plastic and metal prosthesis.
You Can Stop Humming Now Page 7
