You Can Stop Humming Now

by Daniela Lamas

  When his doctors first told him about the machine, I imagine that Van wanted to know what his life would be like. Actually, that’s not quite right. What I think Van Chauvin must have wanted first, what I think that I would have wanted, anyhow, was for it all just to disappear. He was in his midfifties, and before his health had gone to hell he’d been a smoker and a drinker, easily frustrated and quick to anger. His marriage had failed but he had three adult children to show for it. He’d found steady work at a warehouse making building supplies and taken up a hobby: raising birds—macaws, African gray parrots, cockatiels. At first, when his breath grew short, he didn’t know it was his heart. He didn’t know it was anything at all. It is amazing what you can learn to ignore. But then his head started to spin, the world went gray, and he thought he would collapse there on the hard floor of the warehouse. So he saw a doctor.

  She referred him to a specialist. When the cardiologist examined him and listened to his story, she knew she had to send him for an ultrasound of his heart. He might have shivered a bit when the cold ultrasound jelly touched his chest. Maybe he wanted to ask about the grainy pictures on the screen next to him and what they meant, but instead he was quiet. Later that week, he learned that his heart was barely pumping at all. His doctors gave him medicines to take every day, in the morning and at night. He got used to the feeling of the pills in his mouth. He’d never been one for doctors or medicine, but it seemed as though they were doing the job. That was good. He swore off alcohol and joined AA. He went back to the warehouse, and he was slower than he had been but he could still get his work done. Then his doctors told him that he needed something else—a machine that would sit under the pectoralis muscle in his chest and shock him back to life with a jolt of electricity if his heart misfired or stopped pumping. He didn’t think much about this. It would just be a small thing, the defibrillator. So he said yes.

  It exploded inside his chest five times and maybe more. He lost count. Each time the shock rocked him, but then it was over. He would have died without the machine, but there he was, still alive. And he was feeling pretty good. He took a road trip with a friend. They drove up and down the East Coast selling leather jackets, chaps, and T-shirts at bike shows. Mardi Gras came, and even though he wasn’t drinking anymore, he made it to New Orleans and had a great time. He felt so good he even started a project. He decided he was going to build a camping trailer, so he hauled off to Home Depot for plywood and plastic sheeting, and then he bought himself a flatbed to use as the base. He stored it all in a garage he shared with a friend, and in his spare time he worked on it for a few hours each day. He got winded, and there was the threat of the explosion in his chest, but he was better than he had been, back when everything started.

  Van took all the medicines his doctors prescribed. He was still smoking, but he hadn’t picked up a drink since his heart had given out. If he’d been the sort to think this way, he might have felt it unjust when his legs started to swell again, when he became dizzy and couldn’t catch his breath. The camper parts grew dusty, unattended in the garage. He couldn’t even go fishing on the lake when the weather was warm. Merely getting off the couch made his heart race, and it took all the energy in the world to stand, just to exist. So he went to the hospital and waited in the ER until they finally found him a bed. They placed an IV in his arm to give him medicines that would help him clear the fluid that had settled in his lungs and his belly and his legs because his heart couldn’t pump it. This made him feel lighter and better, and he went back home thinking that maybe things would be different. But a few days later, the cycle began again. He was getting sicker, and it seemed as if nothing was able to help him. That’s when his doctors started to talk about sending him to Boston for another device, a bigger one called a VAD.

  With the machine, they said, the odds that he’d be alive in a year were higher than without. But that life would come with new risk and significant hardship. He could have a massive stroke or a dangerous bleed. He might have to go back to the OR for another surgery to replace the machine’s pump. He wouldn’t be able to take a swim or go out in a boat because the VAD can’t get wet. Deciding against the machine might mean a shorter life but one that could be spent at home, with fewer appointments and admissions to the hospital. It would be his choice.

  Van had actually heard of this device before, some seven years back when his brother Paul had gotten sick. Paul was much worse off than Van had ever been, and when Paul ended up in the hospital with his heart barely working, his doctors had a similar conversation with the Chauvin family. The family had said yes to the VAD right away. Paul was in the hospital for three months and he got the device, but it didn’t matter because he died anyway, swollen and comatose, hooked to machines that did not save him.

  So Van thought about Paul, of course. He’d seen his brother die, and his mother had seen it, too, as had his sisters, and none of them wanted to lose Van that way. But they didn’t want to say no, either. After all, it had been seven years. They figured the machines must have gotten better in that time, and while Van was not a small man, he was thinner and healthier overall than his brother had been. As scared as they were, the family believed in Van’s doctors, and they believed, too, in the hopeful forward march of medicine and technology. The way they saw it, this was Van’s best chance. As for Van, he remembered Paul and the way he’d lain there in the hospital bed day after day. Then he thought of what his own life had become: breathlessness, drowning, a couch, the ER. That was what scared him. He figured that if he died, it would be like falling asleep and then it would be over. But if the VAD worked, it would be a “spare tire” that would let him get back to the independent life he craved. Besides, he liked his doctors and he trusted them. So if they gave him the okay, he’d go with the VAD.

  One Sunday morning, I rented a car to head out to Van’s home, some sixty miles southwest of Boston, near the Connecticut border. I had spent a morning observing VAD clinic on what just happened to be the day of Van’s most recent appointment, and one of the doctors there suggested I might enjoy his perspective. When I told Van that I was a lung doctor interested in learning more about what it is like to live with a VAD, his face broke into an incredulous smile. He told me that if I really wanted to know about his life, I shouldn’t talk with him there, between clinic appointments, when he was aggravated and distracted waiting for his name to be called. I should come see him at his home. I was happy to receive the invitation. I wanted to know how and where he plugged in, and whether the cord was able to reach the bathroom at night, and what happened when the alarm went off, and whether he was able to react without terror. I wondered how he’d been able to come to terms with the new limitations imposed by living with the VAD, and whether he ever felt misgivings about the decision to go ahead and receive the device.

  I had stopped by a monthly support group for patients with VADs and their family members earlier that same week. The group met in one of the conference rooms on the main cardiac floor of the hospital. A handful of people in a mix of street clothes and inpatient gowns were already sitting on the couches when I arrived. I took a seat just in time to hear one woman lean in to the group and explain that she hadn’t been sure her husband should get the VAD because she didn’t know if she could act as his caregiver. She looked to be in her late sixties, neatly dressed in slacks, loafers, and a pressed button-down shirt. When her husband had first heard about the VAD, he had been all for it, she said, hopeful that the machine could extend and improve the quality of his life. But she was still working—even in the hospital, she tried to get in a few hours with her laptop each day, just to clear her mind—and as much as she loved this man, she’d struggled with the idea that she would be the one to do his dressing changes and react to the machine’s alarm, day after day. She honestly didn’t know if she had the stomach for it.

  As she talked, my eyes moved to her husband, who was sitting beside her. Illness had aged him, and he was quiet, dressed in a gown and slippers, hooked to a
n IV pole with battery packs hanging over his shoulder. He’d gone with the VAD after all and was recovering from the surgery.

  She was still scared, she told us. She knew that things could go wrong. Her husband could suffer a stroke or a bleed that would leave him unmoving and unthinking, but alive thanks to the machine in his chest. What would they do then? Maybe her husband would end up with cancer, and then they would have to decide whether and when and how to turn the machine off. Maybe the machine would malfunction. Or maybe it would work just as it was supposed to for a while, but she would mess up the dressing changes and the cable’s entry site would get infected. What if she froze the first time the alarm went off and forgot how to change the batteries? None of it would be easy. Yet they’d been married for nearly half a century. If everything went as well as it possibly could, the device would let her husband live longer and better, giving him back some of the energy his heart failure had sapped. He wanted that chance. And she’d taken a vow—granted, she had never envisioned becoming the caregiver of a husband kept alive by a battery-operated artificial heart, but it was a vow nonetheless. She felt she owed her husband this. So she’d gotten on board.

  Driving down the long stretch of highway from Boston to Van’s house, my mind wandered to that support group. I wondered what would happen to that woman and her husband, whether the VAD would give him back some of the life that he missed and whether she would be able to return to work. We’d also heard from a gregarious younger man in track pants who had gone from a VAD to a transplant a year before. He came in late and dominated the conversation once he arrived, but in a likable way that made it clear how proud he was of what he had gone through and how well he was doing. I hoped he would stay healthy. I hoped for the quiet ones, too, those who worried silently. I could imagine each of them in the hospital, me at their bedside in scrubs, monitoring labs and titrating medications and then, when they grew strong enough to stand and walk and begin to complain about the food, arranging their discharge paperwork. But that’s where my imagination ended. I didn’t have the faintest idea what happened next for these people and their machines, beyond the structure and safety of the hospital’s architecture.

  Van lived in a community for the elderly and disabled, in a complex of identical houses. I got lost trying to find his home, and so I pulled over and called his phone number. One of his sisters answered the phone. She stood out on the stoop waving excitedly as soon as she saw my car, greeted me with a hug although we had never met before, and led me inside. I stepped through the door and into the living room. When we’d talked, Van had seemed uncertain that any of his family members would have the time to drop by, and I expected it would probably just be him and maybe one of his sisters. I assumed that I would take a look at the device, we would make small talk, and then I would leave. So I did a double take as I entered the living room; it was as if I had stumbled into a holiday gathering. There was Darlene, whom I’d just met outside, and Donna, who regularly accompanied Van through the clinic labyrinth. The small elderly woman next to her was Van’s mother, and his son was there, too, and a niece, and they were waiting for a few more. Everyone had come by to tell me about Van.

  For a second, I didn’t even recognize him. He looked so different than when I’d seen him in the clinic, now happier and relaxed, surrounded by his family. He was wearing a vest to hold his batteries, and I could see the bulge under his white T-shirt where the controller sat, but only if I looked closely. I settled into my seat and introduced myself to the group while Van ducked into the kitchen to pull a steaming plate of baked potatoes, chives, and sour cream out of the oven. He’d found the recipe on Facebook and was excited for us to try it. Since the VAD, he explained to me via the pass-through from the kitchen, he’d learned to surf the Internet, and Facebook was one of his favorite sites to visit.

  The VAD’s batteries would run out of juice after twelve hours. That meant that each night, Van connected his controller to a power module that plugged into a wall socket so his batteries could recharge. Plugged into the wall at night, he was limited to the cord’s twenty-foot radius, “like a dog on a leash,” until the morning, when he could disconnect from the wall and plug the controller back into the newly charged batteries. Luckily, his house was small enough so that he could make it from the bedroom to the kitchen even when he was plugged in. The bathroom was even closer.

  On the morning I visited, his wake-up alarm had gone off at 4 a.m. The day kicked off with a shower. Even after three years with the VAD, he still hadn’t acclimated to the process. To start, the batteries and controller must stay dry, so he had to take the batteries from their holster and the controller from the Velcro belt Donna sewed for him, and place them all in a large waterproof shower bag that was specifically designed for showering with a battery-operated heart. The bag sealed on top, and the cord and wires exited through a hole in the plastic. This all went into another bag, which was also sealed on top, for extra protection. His doctors had suggested time limits for his showers—no longer than ten minutes, two times a week. The equipment was safer that way. He followed those instructions, mostly, but sometimes he just needed the feeling of that third shower, so he took it.

  After the shower, it took time to change the dressing that covered the hole in his abdomen where the cable entered his body. This part was fairly simple. I walked with Van into his room, and he showed me the corner where he kept a pile of dressing change kits on a shelf. When he first came home from the hospital, he followed his doctor’s directions perfectly. He didn’t really have a choice. He wasn’t allowed to be on his own in those early days in case he faced an emergency with his device—some VAD programs won’t even consider placing a VAD in a patient who doesn’t have a willing caregiver—so one of his sisters or his daughter stayed with him each day and night. While Van was in the hospital, each member of the family had been trained in how to clean the dressing and change the VAD batteries. They’d practiced what to do if the device started to sound its shrill alarm, repeating the steps again and again in the hope that muscle memory might overcome panic. Even Darlene, who was squeamish around medical procedures, learned how to change the dressing that covered the spot where the driveline entered Van’s stomach.

  So when he’d first returned home, Van allowed his family members to stay with him, and together they would change his dressings exactly as they’d been taught, carefully following each of the steps. They would bring the supplies over to Van’s bed. He would lie down and rub alcohol wipes at the site for three to four minutes to loosen the bandage. Then one of his sisters, or whoever was with him, would remove the bandage slowly, inspecting the spot where the driveline entered the skin. Often, there was a bit of dry reddish crust, and they cleaned this off with alcohol and then saline. That would take fifteen minutes. Van would wait another fifteen minutes for his skin to dry, and then cover it back up with another dressing.

  By the time we met, he had taken to doing the dressing changes on his own, and sometimes he cut a few corners, he told me with a shrug, for example pulling the bandage off before rubbing it down with alcohol. Even so, he had to be careful and deliberate. Including the breaks Van needed in order to relax and catch his breath, the shower plus dressing change was about a three-hour ordeal. Usually, after a rest, Van sipped his coffee while playing a few rounds of solitaire on his computer. He liked to stay busy. On the day I stopped by, he had spent the morning making food for my visit. After the potatoes, there would be a tray of brownies with strawberries and whipped cream, and he mentioned that he hoped we would leave room for the dessert.

  As we talked, the front door swung open. I heard a child’s high-pitched voice and turned around to meet Van’s daughter and her son, his grandson, a round-faced four-year-old named Dylan who burst into the house in a Superman T-shirt. He ran toward Van, excited to see his grandfather, and gave him a huge hug. A few months after Van returned home from the hospital, his daughter had called him to ask if he wanted to watch Dylan. Van adored that little
boy, kept a picture of him on the fridge, and savored their time together, but he had said no. He was scared something would happen, that his device would malfunction and he would pass out and the little boy, who was a toddler at the time, would be terrified and, unsupervised, could even get hurt. At first, he would only watch Dylan when his mother or one of his sisters was in the house along with him.

  “If I fainted or something, what was he going to do? Just wait in the house alone all day until someone found him?” He explained his fears to me as I stood by the kitchen while Dylan ran around the living room. “The life was new. I had to readjust to the life.” As the months and then years passed, he grew comfortable enough to spend some hours alone with his grandson, but still with family backup programmed on his speed dial. He hadn’t shaken the specter of device malfunction and possible catastrophe. “When me and him are alone—it’s always on my mind,” he told me.

  One time, Van woke at 2 a.m. to the sound of a loud beep. Thinking there might be something wrong with his VAD, he changed his connection from the wall unit to a set of batteries. The sound continued. Though he wasn’t supposed to switch controllers without explicit instructions from his doctors, he was frustrated, and it was the middle of the night. So he fiddled around with the machine, doing things he definitely wasn’t supposed to do, and still the noise wouldn’t stop. He dragged himself out of bed and to his phone to call his VAD team. Only when he got to the phone and saw the receiver hanging off the hook did Van realize the source of the noise—it was the phone and not his VAD after all. As he told the story, the assembled family members laughed appreciatively, although they’d heard it before. I found myself laughing, too, forgetting briefly that he was talking about life or death, about mistaking the sound of a phone off the hook for a sound that could have meant he was moments away from collapse.