After eight hours or so spent unconscious, I can now modestly claim to know a little something about what being dead feels like. When they finally wheeled me into the recovery room I looked every bit as dead as I felt. The only evidence to the contrary wasn’t heartening: the wires and tubes running in and out of my every orifice, all the original orifices and others newly reamed for the occasion. Moreover, I was lashed to my gurney, my hands strapped down against the likelihood that when I came to I’d try to tear out the tubes that disappeared down my throat. (Everybody tries to do that, said the nurse.) My wife, Betsy, and my daughters, Molly, Joanna, and Laura, took one look at me and they all burst out sobbing.
But they got over it. When I finally drifted back into consciousness it was during Laura and Molly’s shift, and I woke to the sound of them jabbering merrily, as sisters do. Soon I was jerking my thumbs upward in what the family interpreted as a jaunty Roger Ebert gesture, I’m doing great! The actual message was, Get these goddamn tubes out of my mouth! They soon caught on, though the tubes stayed in.
As I couldn’t make a sound, it was easiest just to close my eyes and try to bask in the sounds of family. But whenever I attempted to, some strange new sight enveloped me from the inside of my eyelids. These visions were random and astonishingly vivid, and every time I opened my eyes and closed them again I plunged into a new one. I’ll just list the things I’m seeing and that’ll make it clear how weird this experience is, I thought, already fretting over how to describe what I was going through without getting mawkish. But then I thought, I’m not going to remember a thing!
I was formally the neediest liver patient in Chicago. I didn’t know whether to think of this fleeting prominence as a justly deserved good break or as an old-fashioned Chicago legal loophole benefiting the unworthy.
This wasn’t quite true. I closed my eyes one time and found myself being visited by a friend who’d brought me a book, written by a friend of his, that he thought I might want to review. The book by my friend’s friend was a novel about a marriage that went bad and ended in murder; the creepy thing was that the names of the book’s unhappy couple were the names of my friend and his former wife. These are deep and swirling waters, I mused as I lay supine and rigid, hallucinating on my gurney.
By the next night, the vivid pictures had given way to an incoherent torrent of words and notions that bubbled up like a clogged toilet and made sleep impossible. A doctor said not to worry about it; hallucinations were par for the course with an agitated liver. And the third night, when I closed my eyes, nothing greeted me but welcome darkness.
My liver wasn’t simply agitated. It was brand-new. I’d known since 2001 that an autoimmune disorder called PSC—for primary sclerosing cholangitis, the inflaming and obstructing of the bile ducts inside and outside the liver—would eventually lead to a transplant, if it didn’t lead first to cancer and a quick death. About three years ago I began losing weight, and last summer my family began remarking on how yellow I looked. When doctors discovered a serious deficiency of vitamin K, which is what causes blood to clot, my family shoveled kale into me. “You’re sicker than you feel,” my hepatologist said gloomily at one point. My wife wrote a letter informing family and friends that I was in the market for a living donor. Michael Sneed and Jim Romenesko got hold of the letter, and that meant the word was out.
The protocols of transplant surgery put me in a curious position. Livers most often come from cadavers, but I’d been told I’d never qualify for one of those, as the algorithm that ranks need against supply was biased against PSC patients—our livers were apparently too healthy for too long, even though their fetid bile ducts made them death traps. This left only a living donor; I’d be given a third of his or her liver, and the donor’s and mine would soon grow to full size within each of us. But even to the donor the process was long, punishing, and by no means risk free. (I was far more relieved than disappointed that my daughters turned out to be the wrong blood type.) Friends who dutifully would have stepped up for me, as I would have for them, were all too old to be considered. After my brother in Texas placed a note in a church bulletin a seminarian put his name in—or so I heard—and Charna Halpern of iO, who’d read about me in Sneed’s column, said a couple of actors she knew volunteered to help. I have no idea what happened to any of these good Samaritans, because the Northwestern Memorial Hospital transplant clinic told me nothing. Living donation walks the ethical edge as it is (“First, do no harm,” being medicine’s watchword), and the slightest taint of social coercion would tip the balance. A good way to avoid that taint is to keep the patient and his family completely in the dark about whom to coerce. So the clock ticked, days and weeks passed, I got yellower and yellower, and I had no idea if a liver would ever come to me from anywhere. I also had no idea whether I had any right to one. After all, I’m 70.
But one day my friend Peter McLennon astonished me with the news that P.J. Klapperich, his son-in-law, had not only volunteered his liver but nearly completed Northwestern’s lengthy vetting process. P.J. had every reason not to get involved: he was a new parent, and in graduate school, and his wife, Sarah, was pregnant again. And although the Miners and McLennons share a long and tangled history—Betsy and Peter’s late wife, Phyllis, were business partners for about 35 years and their daughters grew up as best friends—P.J. and I didn’t know each other particularly well. But Peter said P.J. is a good man who believes that when the right thing isn’t easy to do, that’s all the more reason to do it. Our joint operation was scheduled for April 16 to suit P.J.’s schedule, which is the one that counted, as the transplant was viewed as elective as far as I was concerned—necessary soon, but not necessary today or next week.
But then things took a turn. On March 18, working alone at home—Betsy was visiting a sister in San Francisco—I began to feel punk and took to bed. When Peter called and invited me to meet him for dinner, and I told him why I couldn’t, he insisted he take me to the hospital right then and there. Forget that, I said, but call me in the morning, and if I still feel this lousy I’ll go with you. I was pretty sure I wouldn’t. But I did.
I cannot pretend the halfway decent life behind me entitles me to profit from another man’s tragedy.
The first thing they did at the ER was measure my blood’s clotting capacity, a number known as the INR (for international normalized ratio). A healthy number is one. Before I started taking vitamin K pills (the kale didn’t work) I’d been clocked at eight, but a pill quickly brought it back down. This time my INR was 16, I took two pills, and in the morning it was 12. By injecting me with vitamin K they lowered the INR to 2, but now my abdomen was hurting me something fierce, and I finally felt every bit as sick as I was. I wondered if I’d even live to April 16.
Impending death is not necessarily a negative development. Priorities for new livers are set by something called a MELD score, an algorithm based on three numbers, the INR being possibly the most important. PSC patients normally don’t record INRs high enough to qualify them for cadaver donors, but my 16 not only put me on the transplant list but at the top of it. We readjust the list once a week, the doctors said, and once your 16 is changed to a 2 you’ll drop off it; but for a few days—my window of opportunity!—I was formally the neediest liver patient in Chicago. I didn’t know whether to think of this fleeting prominence as a justly deserved good break or as an old-fashioned Chicago legal loophole benefiting the unworthy—but I doubted it mattered. Lots of people on transplant lists die waiting; even though I was at the top of mine I expected to be sent home and told to hang on until April 16 if I could.
To my amazement, about three o’clock the next day, Friday, a nurse at the transplant clinic called my room and told me they had a liver. It would take hours to examine carefully, but she sounded optimistic. When would you operate? I asked. Tonight, sometime after midnight, she said. They don’t wait around.
Betsy, who’d come back to town Thursday and set up residence in my hospital room, texted our daughters. I retreated to my default behavior as someone who doesn’t so much feel his emotions as think about them. Someone just died and you stand to benefit from it—that’s a tricky position to get your mind around. After all, there was no possible way to pretend I actually deserved this liver, deserved it more than its original owner did.
About ten o’clock that night the clinic called back—the liver had passed its inspection and the operation was on. They’d be coming to get me around 3 AM. With the lights dimmed in my hospital room—me lying in bed, Betsy in a chair next to me—I said what I needed to say about our children and our marriage and our lives. It was a scene we’ve all watched play out in a hundred movies, where peril looms and truths must be hastily spoken. Fortunately, our truths were true: I had no regrets, and apparently, neither had she. We’d both been good parents and our kids were incredible, we hadn’t gotten bored with each other, and if we had a chance to do it all over again we would.
They came to get me at 3, and at 4 AM I was wheeled into the operating room. I looked around. Boy, this is cluttered, I thought. It looks like somebody’s attic. That was my last thought. They put me under, opened me up, scooped out a rank, swollen organ later described to me as really “pus-y,” and laid in a replacement 36 years younger than the rest of the body it was joining.
So I lay there in the recovery room, hallucinating crazily, bridling at all the plumbing fixtures dangling from me, but warmed profoundly by the familiar babble of my family’s voices. Earn this! I heard a phantom voice say. Earn not only the extra time on earth given me by someone unknown whose own family weeps with anguish, but earn the life you return to: the wife, the children, the love. My next thought was immediate. I can’t. Too much of my life is behind me. So I asked myself, Is it possible I have already earned it? And the answer to that one was no. I cannot pretend the halfway decent life behind me entitles me to profit from another man’s tragedy.
My hepatologist advised me not to think about it because thinking would get me nowhere; but I have to think. In getting a new liver, I consider myself fortunate in one small respect in addition to the obvious big one: I’m not burdened by wondering who was next in line behind me, perhaps someone far more deserving, a child who’d live 50 years more with a new liver. I was just the first of three patients to receive a new liver on March 22—a remarkably busy day for the transplant team. So I tell myself the next in line was also accommodated. If I am fooling myself, I’m fooling myself successfully.