Dr. Stewart came into my room a half hour before midnight. His shift had ended hours earlier. I asked him if he was lost.
I paused the movie running on my laptop. I always turned the TV off when someone came into the room to talk, but that night I was happy to do so. I was watching, with great reluctance, a buddy movie with Mark Wahlberg and a foul-mouthed pot-smoking teddy bear. Two days earlier a nurse in the room saw a TV commercial announcing this DVD was now available. She said it was the funniest thing she’d ever seen and I just had to watch it. I told her I was a snob about movies, especially comedies, and I was sure this wasn’t for me. But the next time I saw her she handed me a brand new ‘Ted’ DVD. It was a Christmas gift for her brother-in-law and she was loaning it to me so I could watch it before she wrapped it. It was a wonderful gesture, but really, ‘Ted’? I said thank you and I’d watch it over the weekend.
I said ‘thank you’ for everything: needles, blood draws, wake-ups, finger stabs, delays, that potassium drink—everything. The day I checked in to the hospital I vowed to be an old-school gentleman. This was going to take months, and there was a chance it would be the last thing I ever did. I wanted to do it well.
I didn’t complain. I wasn’t sarcastic. I made no racy or sleazy comments (I’m dying of heart failure for Christ’s sake – the women are going to think I’m sexy?). I obeyed all the rules. I was friendly and polite with everyone. My room was a stress-free haven for the belabored hospital staff.
Dr. Stewart looked terribly out of place. He had the squint and pallor of someone who had been out in the dark and was now readjusting to fluorescent lights. I assumed he had gone home and come back.
I received ‘Ted’ after finally getting back from my every-tenth-day procedure downstairs. The operating room was in the basement, ten floors down from the room I had called home for the previous three and a half months. They had put a new wire into my neck. One end of the wire plugged into a monitor. The other end dangled inside my heart. I had seen it on a live-view x-ray screen, waiving like a flag in the wind, propelled by the blood flowing through my heart. At least that’s what they said it was. How are you supposed to believe something like that?
The wire stayed plugged into my neck nine days at a time. It was bundled together with two intravenous drip lines and a thick cable that spread to EKG tabs taped on my chest and stomach. This combination of hoses and wires made for a ten foot leash. My movements were restricted to: lying in bed, standing or squatting next to the bed, and sitting in a recliner next to the bed. I bathed and shampooed with a facecloth, I peed in a jug and I pooped in a commode that was dragged next to the bed, dragged away, and emptied by people I summoned with my bedside call button.
But not on the tenth day! The day before I received ‘Ted’ was my ‘free day’. On the morning of every tenth day the line was removed from my neck and I was free! Sort of. I was still tethered to my IV pole but it had wheels! And I still had the EKG tabs stuck on me but I carried a heavy box in my robe pocket that connected me to the monitor wirelessly. I couldn’t leave the floor but I could walk the corridors. I could sit on the toilet in the bathroom without asking anybody for help. I could even shower, sort of. I stayed connected to the IV drip so someone had to wrap my arm in a waterproof plastic bag. The IV pole stood outside the shower curtain and I needed to keep my arm close to it. So I couldn’t wash that arm, nor could it wash the other arm. I had ten of those dirty-arm showers during just over one hundred days. They were the best damn showers of my life.
The joy of the free day was all too quickly followed by the melancholy morning that began another nine non-free days. Invariably the scheduled surgery time would be moved up without warning and my gurney driver would be waiting for me as I hurried to finish some simple pleasure, like shaving at a sink.
Dr. Stewart was, I’ll guess, in his late thirties. He was meticulously professional and friendly, but in a noticeably detached way. The heart team at Brigham and Women’s was world class. They got the toughest cases and many of the patients in their care had problems that were ultimately beyond help. The doctors had to develop attitudes that prepared them for losing a patient in one moment and treating another patient in the next. Dr. Stewart had this attitude.
That Friday in the basement I was in and out of surgery quickly. I was wheeled back into the waiting area and, because all the waiting stalls were full, I was parked in the corner of the room next to the blanket warming machine. No problem, except that fifteen minutes turned into thirty which turned into an hour which turned into two. Someone eventually told me there was a ‘staffing problem’ on the ninth floor and I needed to wait until the end of the shift before I could return.
Because I was alone in an area with no TV I was the last person in the country to learn that twenty children and six adults had been shot to death at Sandy Hook Elementary School in Connecticut earlier that day.
Three o’clock arrived, marking the end of the understaffed shift. I began waiting in earnest for my ride upstairs. I hadn’t eaten anything since the night before – one can’t eat before a procedure. I had a headache resulting from the surgical sedative, and I was no longer interested in sleeping. The nurse finally arrived and said they were ready upstairs. She was going to bring me up, but first she asked how I was feeling. OK, I replied, just a little headache. She asked, “Do you want me to get you some aspirin?”
Experience told me if she went away to get aspirin I wouldn’t see her for twenty minutes. I snapped at her, “No! Let’s just get going!”
It was the end of her shift. The waiting room had been overflowing with people all day. And she was undoubtedly upset after hearing about Sandy Hook. My attitude was the last thing she needed. She got in my face and said, “I was just trying to be nice!”
I felt terrible. For the first time in over a hundred days I had broken my ‘gentleman’ rules. Always taking the high road allowed me to feel above, and in control of, my situation. As she wheeled me up to my room I felt, for the first time, how powerless I was.
Back in the room, at four in the afternoon, I ordered my first meal of the day. I caught up on the horrible news, and the nurse gave me the ‘Ted’ DVD. I checked email and favorite web sites, and I checked the TV listings to plan how I would spend the night. Other than monitoring my health, my full-time job was to keep mentally busy while doing nothing.
That night I watched a movie that ended at 11. I was still wide awake. I had slept a lot in the basement so I knew I wasn’t going to nod off any time soon. There’s only one fitting way, I thought, to end this lousy day. I plugged ‘Ted’ into the laptop and began watching. It was as dreadful as I expected.
Twenty minutes later Dr. Stewart came into the room and I put the movie on pause. I couldn’t imagine why he had come to see me.
He stood at my bedside and said, “We think we’ve found a heart for you.”
Three and a half months earlier, on a Saturday in August I told my wife my situation did not look good. Excellent doctors had performed lots of tests and studied the results and nobody had any answers. I had a heart that was operating at less than fifteen percent efficiency. That was some tough news. There aren’t a whole lot of numbers between fifteen and zero. My eight-cylinder engine was down to its last cylinder. I told my wife to be prepared to hear the word ‘transplant’. I didn’t know anything about it, and no one had yet floated the word past me, but I concluded that my heart was beyond repair. If I was going to live I needed a replacement.
I heard the word three days later when I went into the hospital for a clinic visit. I had a couple of tests before meeting with the chief cardiologist. She told me I was a time bomb. I didn’t have enough heart function to safely continue walking around. She said I needed to check into the hospital today – that day, now – and wait until a donor heart became available.
I called my wife, told her what was going on and told her to meet me at the house. She drove me back to the hospital after I dropped off my car and grabbed my laptop and toothbrush. We were calm. I was relieved that I had been offered a solution. My rare blood type meant my wait for a donor would be shorter that if I had a common blood type. Statistically, at least, I was going to avoid the debilitating wait of six months to a year or more that people often face. Things had great potential to be OK.
I arrived at my room in the quietest way possible. No sirens, no heart attacks, no paddles. Other than my heart I was in great health. I walked into the room, changed into a johnny and lay down. A hundred and eight days later, same room, different johnny, I was watching ‘Ted’.
Dr. Stewart said, “We think we’ve found a heart for you.”
Someone died. Someone with my blood type and a similar weight. Someone who elected to be an organ donor if he died. Somewhere there was a family who had just had a son, brother, husband torn from them, and in the midst of their grief they agreed he would be an organ donor. Everyone at the hospital, me included, used expressions like “waiting for a donor”. We were waiting for someone to die, and it was disquieting to think it had actually happened.
But, you live with it.
It’s like receiving life insurance proceeds, or being named in a will. My benefit from someone’s death was I was going to live. It was a big deal that I had made it to that point. My disaster of a heart stayed stable long enough to keep me alive. I wasn’t one of the 21 people in the U.S. that die every day while waiting for a transplant. I won. There was one ticket out of that room and it had just been handed to me.
Dr. Stewart said, “We think we’ve found a heart for you.”
Had I thought about this moment? Of course. I tried not to dwell on it. I tried to be calm and patient. I told my wife a month earlier let’s forget Thanksgiving and Christmas and New Year’s and her birthday in January and Valentine’s day – let’s assume I won’t be home for any of it. But every day, despite my intentions, I woke up wondering if that day would be the day. And now here it was – ‘the day’ – and Dr. Stewart stood before me and said the words I’d been dying to hear.
And what did I do? How did I react to this, arguably the most important news ever delivered to me in my life? I pressed the ‘eject’ button and said, “So I don’t have to watch this Goddamn movie anymore.”
Forty-four hours later I was in post-op intensive care watching the Patriots get pummeled by San Francisco while another man’s heart beat inside my chest.