How Death Becomes Life

by Joshua Mezrich

  In the early days of liver transplantation, saving patients with alcoholic liver disease was generally considered an inappropriate use of this limited resource. Yet now that the practice has been supported by data showing that outcomes for these transplants are as good as or better than outcomes for other diagnoses, the policy has changed. Many programs require candidates to have been abstinent for at least six months. Why? Is a patient who qualifies less likely to go back to drinking after a transplant? And what if a particular patient is so sick from his liver disease that he can’t drink? Does waiting that six-month period benefit anyone?

  The six-month rule, which has been widely adopted at many transplant centers around the country, came from a retrospective study of forty-three patients who underwent transplant for alcoholic liver disease. In this analysis, abstinence for less than six months prior to transplant was considered a risk factor for recurrence. Multiple further studies have been equivocal on the specific length of abstinence required to reduce recidivism, or return to alcohol use post transplant. To add to the confusion, a recent study from France (where drinking wine is essentially required) showed that well-selected patients with a diagnosis of severe acute alcoholic hepatitis did just as well with transplant and had a similar recurrence rate as those who had abstained for six months.

  I have had wonderful success with patients who came into the hospital in acute liver failure days after their last drink, and stunning failures with patients who had not had a drink in years. I remember a twenty-seven-year-old with severe anxiety disorder and acute alcoholic hepatitis, within days or even hours of death, who completely turned his life around after his transplant (and hellish recovery) and is back in school. I remember a young mother who drank on the sly who has rededicated herself to her family and career. I also remember the look of shame and regret on the face of an intelligent, successful, endearing father of three who was admitted to the hospital with a trashed transplanted liver from relapse because he could not free himself from the grips of this deadly disease.

  I continue to struggle with this question, whether we should do transplants in alcoholics. Who are the right people to receive this gift of life? In the end, I don’t have the answer. But maybe my patients do.

  Lisa’s Story

  I can still remember when I first met Lisa. I had just finished my rounds and decided to swing by her room to quickly deliver my spiel about liver transplant. All I really knew about her was that she was young, forty-one, and sick. Her MELD score was 32, and her disease was alcoholism.

  When I walked into Lisa’s room, something about her startled me. She had this fresh, young look, a beautiful smile, and although she was sickly and yellow and swollen, there was a sense of joy in her, and a bit of mischief visible beneath the fear and anxiety that accompanies severe illness. Her eyes emitted a hint of sorrow, an understanding of what she had done to get here. Somehow that wasn’t what I had been picturing when I heard about this woman with alcoholic cirrhosis who had been abstinent for over a year.

  When I got back to my office, I flipped through her chart before writing my note, focusing particularly on the AODA (“alcohol and other drug abuse”) assessment that is part of our protocol. The assessment fit with my rapid-fire read of her during our first meeting. Lisa drank wine—usually no more than two glasses a day. She had drunk more when she was younger, but not now. She did think she used alcohol to help with anxiety, some of which may have stemmed from an assault she endured when she was younger. But she had been sober ever since she found out she was ill.

  As I read that report, my initial thought was that alcohol had probably played some role in her liver disease, but it may not have been the primary cause. We never really know how much alcohol it takes in any individual to cause cirrhosis. In general, we think that men who have more than two drinks a day and women who have more than one are likely abusing alcohol, but the majority of people who drink at this level will not develop liver disease. Many other things can play a role in the development of cirrhosis, from genetic factors to obesity (leading to fatty liver) to plain old bad luck.

  We also know that, when asked about it by a health professional, people tend to underreport how much they drink. So, as a simple rule of thumb, we usually double the amount people report—especially when they are being considered for a liver transplant. Nevertheless, I thought Lisa was at low risk for recurrence, maybe because I instantly liked her. Even I, a transplant surgeon who enjoys drinking alcohol, wanted to believe she didn’t really drink that much.

  Lisa’s surgery was as straightforward as a liver transplant can be. We did find about five liters of pilsner-colored ascites (fluid) in her belly, and a shrunken, cirrhotic liver, which we dissected away from its blood-filled attachments. We stayed in all the right planes, never lost control, never had to turn the music down or stop my constant stream of jokes. When we brought the new liver to the field, we remarked on how beautiful it looked. We hooked up all the blood vessels, and then released the clamps and watched the liver pink up and purr back to life. Shortly thereafter, it began emitting beautiful yellow bile from the duct, and we knew things would be okay. We sewed the ducts together, the donor organ’s to the recipient’s, took one last look around for any bleeding, and closed Lisa up.

  Things went so smoothly that Lisa’s breathing tube was removed while she was still on the table. We wheeled her out, victoriously, to the recovery room, and I went down and spoke to her family. Everything had gone great. It was 4:00 p.m. I was even able to get home in time for dinner. Nice day.

  Lisa’s recovery went well, and when I saw her again in the clinic three weeks after her discharge, her yellow hue was gone and most of the excess fluid had drained from her body. She looked like a “civilian,” as I like to say, no longer in the standard-issue hospital gown and slippers. Her smile looked the same to me, and the sadness in her eyes seemed to have gone. I would soon transition her over to my partner in hepatology, Dr. Alex Musat.

  When Alex saw her two months later, her liver numbers were perfect. She was pleased with her recovery and was enjoying her family and her life again. He scheduled her to return for another visit in six months—but she didn’t show. Then, ten months after her transplant, she was admitted with severe liver dysfunction, her skin as yellow as when she started. Her liver biopsy suggested she had been drinking again.

  I went to see her, and there she was, mildly yellow again, back in her standard-issue gown. I awkwardly danced around the issue of alcohol, finally asking her if she had resumed drinking since the transplant. She promised me she hadn’t. Her reason for having missed her follow-up visit and lab draws for the last few months, she told me, was that she had been busy. I told her that if she drank again, this new liver would fail.

  Of course, none of us believed her. Unfortunately, we had seen this before. Over the next few years, Lisa was in and out of the hospital with serious liver dysfunction. For a while, she continued to deny her drinking, and then eventually admitted to drinking just a little bit.

  Not even five years after her transplant, I got an email notifying me that she had died. I knew that her liver was shot, that things couldn’t have ended any other way. Yet her death stayed with me. I could still see her smile, still remember her young family, her children. Why couldn’t it have turned out differently? What did we miss? I consoled myself with the idea that at least her family had gotten to enjoy her for a few more years, that in some way the gift of life must have been worth it. But was it?

  More than three years after her death, I reached out to Lisa’s husband, Jay, to see if he could help me understand what had happened, if we could have done something more to help his late wife. Jay struggled with this request. He and his three children were healing, moving on, and he didn’t want to pull the scab off the deep wounds they had endured. He also admitted that he had anger toward us—he couldn’t understand how we could give Lisa a new liver and yet not treat her alcoholism. To him it was like putting a “Band-Aid on a gushing w
ound.” Yet he ultimately decided that if Lisa’s legacy could help someone else, help us understand and talk about alcoholism and mental illness, a meeting would be worthwhile.

  Jay met Lisa right as he was finishing college. She was well read, well traveled, and beautiful, and she quickly became his best friend. His career was taking off beyond his wildest dreams, and everything seemed to be going his way, especially now that he had found Lisa. In retrospect, he admitted that there were some potential warning signs. He had known about her strained relationship with her parents, although he had barely met them. He knew she’d had a “rough” upbringing and that, when she was around sixteen, she sat her mom down and told her, “Either you kick Dad out and get a divorce, or I’m leaving.” Jay thought it likely that Lisa’s father was himself an alcoholic, or at least someone who abused alcohol. And “it sounded like he was probably verbally if not physically abusive,” he told me. Jay was surprised at how little contact Lisa’s remaining family had with her father, and with Lisa, especially once she and Jay had children. The isolation from her family was devastating for her.

  Did this isolation play a role in Lisa’s alcohol use? Jay thought it did, but then he brought up something else: “I think the root cause was the PTSD, and I think the PTSD came from something that happened in college that was very violent.”

  Lisa was a victim of sexual assault, and never really got over it. Jay blames himself for not understanding how much it affected her, and how she never really dealt with it. “Frankly, early on in our marriage, just because I was so young, I wasn’t ready for that news,” he told me. If he’d realized how much it was still bothering her, he added, “I would have said, ‘Hey, you need to seek out some counseling.’ ”

  The signs of alcohol abuse were gradual, and easy to miss. There were a few occasions when Jay would find an empty beer can under the sink and ask Lisa about it. She would simply remark that she’d been cleaning and forgot about it. As Jay told me, “In marriage, you’ve made vows, and so you want to be trusting. And so I would dismiss it . . . but there were inklings that there might have been issues.”

  Each episode seemed to have an explanation, a story that didn’t involve Lisa being in a drunken stupor. Eventually, her problem became undeniable, but they both continued to try to ignore it. In this way, Jay and Lisa were able to avoid facing her condition for years, something that became next to impossible when she woke up yellow and was diagnosed with advanced cirrhosis, most likely due to alcohol abuse. Ultimately, Lisa’s health deteriorated more, and she made her way to our hospital for her transplant.

  It is hard for me to write about what the next four years were like for Jay, Lisa, and their family. As I flipped through Lisa’s file, reading about the many phone calls, clinic visits, outside hospital admissions, and transfers to our institution documented in her medical record, I could only imagine the confusion, fear, and, ultimately, desperation she and her family felt. And then I read the predictable, heartbreaking denouement at the end of her record. There were a couple of short notes from me—reminding me when I’d stopped by and said hello and when, on the way out the door, almost as an aside, I’d said, “Lisa, you really shouldn’t drink anymore. It will kill you”—as if, somehow, that would be enough, as if I had done my part. What I couldn’t glean from the notes was how, every day, from a few months after the transplant until Lisa’s death, maybe fifteen hundred days or more, Jay and his family struggled with this disease.

  There were some trips to rehab, but they never worked. Over a short period of time, her transplanted liver began to fail. Her read-missions started increasing. Countless times, Jay described finding her unconscious, not knowing whether it was from alcohol or a failing liver. He’d call an ambulance, and she would get admitted for a few days, or weeks, and then she’d come back home and repeat.

  Eventually it became obvious to Jay and his family that Lisa was not going to be cured. She was back where she’d started, just as yellow as before and totally confused. The number of times she was in and out of emergency rooms, hospitals, and rehab centers is astounding. Near the end, she was seen by the palliative care service and, ultimately, hospice. In her ever-decreasing lucid moments, she continued to deny the effect alcohol was having on her life and health. Finally, just three weeks before her death, she apologized to Jay.

  Why did it take Lisa so long to admit what alcohol had done to her and her entire family? Jay thinks it was because of embarrassment, because of the stigma attached to alcoholism, and mental illness in general. She felt it was something she should have been able to deal with on her own, without anyone else knowing how much she was struggling.

  Lisa died at the age of forty-five. I’d like to say she died at home, surrounded by family, having finally understood her disease and reached a state of peace that gave those who loved her some comfort as she took her final breath. But it wasn’t like that. She ended up in the ICU, on a respirator, with tubes and lines poking into her. Maybe that’s what she wanted—maybe fighting to the end, hoping for more time with her family, was worth it to her. But as I review the details of her posttransplant life, I find it hard to accept the hell Jay and her family were put through.

  Lisa didn’t die of liver disease; she died of mental illness. She was addicted to alcohol, which she’d likely turned to in response to anxiety, unrecognized PTSD, and a genetic predisposition to addiction. When we put a new liver in her, this simply reset the clock. It didn’t do anything to treat her disease. In some ways, this is a microcosm of how our whole health care system works. We celebrate, and pay for, the big, sexy interventions—the operation, the cardiac catheterization, the heroic treatment that is technically challenging and potentially risky. But what really matters, and yet what our health care system doesn’t prioritize, is the day-to-day caring for chronic disease, the incremental, preventative care that can avert transplant altogether. Alcoholism is never actually cured. It can be managed, it can go into remission, but it is always there.

  So, should we have transplanted Lisa? I don’t regret that decision, but I do regret how we managed her afterward. We knew she was high risk, and we knew that about 20 percent of patients relapse after transplant. She had so much to live for, was charismatic, intelligent—and believable when she claimed she’d stopped drinking. And because she initially did so well, we mistakenly thought she would be okay.

  We try very hard at our program to provide support and counseling, to hook patients up with mental health professionals upon their discharge, or to send them to an appropriate rehab facility if we think that is needed. But when Lisa told us she wasn’t drinking anymore, we fell for it, just as Lisa did. She was very convincing because she herself was convinced she was okay.

  I still feel horrible about this case today. Jay and his family didn’t deserve this. Neither did Lisa. She was a good person with a bad disease.

  Yes, addiction is a disease. Having an addiction doesn’t mean you are weak or bad, or that you deserve to die. Addiction shouldn’t be an embarrassment, but you need to ask for help. Lisa was just too embarrassed to do the very thing that might have saved her life.

  Still, I ask myself, if she had asked for help, would we have known what to do?

  Herb’s Story

  Cunning, baffling, and powerful—that is how Alcoholics Anonymous describes the allure of alcohol. That description conjures images of a serpent slithering around, its tongue lashing out, waiting to strike at will, and the victim powerless to resist. The reality is that some people have no problem drinking casually, while others seem to fall under the grip of this cunning force. Why? What causes seemingly thoughtful, intelligent people to become addicted to alcohol, to the point where it destroys their livers and their lives?

  No doubt, there is a genetic component, but that isn’t the whole story. I’ve met many patients with no family history of alcoholism, and no other form of addiction, no specific reason they would need or want alcohol to deal with their daily lives. But just as many people associa
te coffee with starting their day, many people associate alcohol with relaxing at the end of it. Pretty soon, though, they start taking a drink earlier and earlier in the day. And once they’re hiding it from their families, they’re too far gone. The disease is that cunning.

  HERBERT HENEMAN, DICKSON-BASCOM professor (emeritus) of management and human resources in the School of Business at the University of Wisconsin–Madison, was not your typical corner-of-the-dive-bar alcoholic. Herb grew up in St. Paul, Minnesota. His father was a business school professor, and his mother was a stay-at-home mom. Herb had a happy childhood and a very supportive family. He describes his parents as somewhat heavy drinkers, particularly his father, but he remembers no health issues, legal problems, or family crises related to alcohol. His parents would not let him drink while he was growing up, and although he did drink a small amount with his friends in high school, he does not consider it excessive when he reflects upon it. Still, he did grow up in a culture of drinking and was used to seeing alcohol at meals and other social gatherings.

  He attended a small liberal arts college, where he excelled. He occasionally did some “hard drinking,” on weekends, at parties, but didn’t drink during the week. Once he finished college, he began graduate school at the University of Wisconsin and married his high school sweetheart. Everything was falling into place.

  Herb doesn’t remember a specific time when he suddenly increased his drinking, but alcohol slowly started to play a bigger role in his life. He continued to excel at work, easily getting promoted and thriving within the university’s tenure structure. But at some point, he remembers thinking about alcohol more and more. He found himself stocking his liquor cabinet more frequently, and he started drinking during the week. Then he found himself drinking during the day, and not just at home.