He doesn’t remember a dramatic liftoff. Alcohol just slowly started to permeate everything he did. He started hiding his drinking from his wife and kids, and drinking alone. He found himself getting sick more often, episodes he described as the flu, or exhaustion, or general weakness. He’d be on his back for three to five days, but once he felt better, he’d say, “Good. I’m better. Now I can drink again.” Eventually his physician told him it was his drinking that was causing his health problems, but Herb didn’t buy it. He knew he could stop if he wanted to.
Things came to a head for him on Labor Day 1990. He and his wife were hosting a wedding party for his niece. Herb had told his wife that he’d stopped drinking, but, as he says candidly, “I hadn’t.” As he remembers that day, “I had in my mind that I really didn’t want to be a part of that party, and so I was drinking very heavily prior to it.” Something nobody knew.
Herb was hammered—stumbling, sweating, and generally not looking well. A nurse who happened to be at the party thought he was having a heart attack, and an ambulance was called. En route to the hospital, a blood-alcohol level was taken, and it came back at 0.375. Herb was placed in detox, and from there he went to a twenty-eight-day inpatient rehab program. Once he sobered up, he realized he was sick. His liver hurt and felt swollen (probably alcoholic hepatitis), his thinking was impaired, and his digestion wasn’t right. He was sober for the entire twenty-eight days, and told everyone there he was committed to sobriety, that he had it beaten.
He relapsed the first day out. About two weeks later, his wife caught him drinking. She was devastated. Herb went to detox again, and once he was sober, he agreed to be committed to a behavioral addiction unit as an inpatient in a psychiatric hospital in Milwaukee. How far he had fallen! Still, this wasn’t just any inpatient program. It was the McBride Center for the Professional, a branch of the Milwaukee Psychiatric Hospital and a place where patients with successful careers can be treated for their addictions. Being surrounded by other professionals was absolutely critical for Herb. In a regular rehab facility, it is too easy for people of Herb’s social status to look at the people around them who are also struggling with addiction, especially if they are from a different walk of life, and say, “I’m not like them. I can control this.” Even so, at McBride, Herb resisted. He didn’t really want to participate in the group sessions; he just wanted to read about alcoholism and beat this thing using his own brain.
“On a Sunday morning,” he told me, “I went to a little interdenominational church service that was being held in the hospital. And as I walked in the door, this woman began playing ‘Amazing Grace’ on the piano. And that was my true turning point. All of a sudden, and I cannot explain it to you in rational terms, but I began to feel that amazing grace. And I sat during that whole service just crying and coming to that full realization that truly I had a problem.” Herb spent three months as an inpatient.
Although he was finally owning his alcoholism, he was also facing the fact that his liver was failing. He was diagnosed with cirrhosis. After three months, he was released from the psychiatric hospital and found himself in the office of Münci Kalayoğlu, who had trained in transplant under Thomas Starzl and started our program in 1983. Münci told Herb that if he was able to stay sober for a year, he would perform his transplant. But, he told Herb, “there is one thing I want you to understand. If you ever, after your transplant, go out and drink again, I’m going to come over to your house with my pocketknife and take back the liver.”
Herb has grasped the fact that his alcoholism will never be “cured.” It is always lurking, ready to come back with a vengeance. “The other thing that really helps keep me sober is that I was so fortunate to receive a transplant, particularly back then. It would be an absolute dishonor to my donor family for me to go out and drink again and somehow do any damage to my liver.”
After his transplant, Herb had one brief readmission for a rejection episode. Otherwise, he has had no problems with his transplanted liver for more than twenty-five years. I asked him how the transplant changed his outlook on life.
“I think it changed it much for the better. Between that and being a recovering alcoholic, there’s an appreciation of the sweetness of life that I never had before. I have a much, much greater empathy for other people. I try to be of service to other people in any number of capacities, both in the transplant community and in the alcoholism community. So, I’ve led a much fuller life than I otherwise would have.”
I asked for his thoughts on transplanting patients with acute alcoholic hepatitis, patients who clearly can’t survive a waiting period of sobriety prior to transplant. He said, “My own experience was very much that recovery needs to be a very serious, lifelong commitment, one day at a time, and that people who try to go it alone are not very likely to succeed.”
I agree. A liver transplant is a necessary tool that treats one symptom of alcoholic liver disease—it replaces the dysfunctional organ involved. But it can’t be looked at as a wake-up call, a treatment in itself for the disease of alcoholism. Alcoholism demands lifelong support, counseling, and mental health treatment. It is our job (and the job of our colleagues in mental health) to identify those patients who have insight into their disease, and some chance of success after transplant. Otherwise, we are likely to fail with the limited resource of a new organ. For those who are too sick to wait, we should require and provide intensive counseling and mental health treatment until that insight is achieved. We also can’t look at relapse as a failure, and turn our backs on the person. When a transplant patient relapses, it is often seen as an affront to us, the donor, and the entire transplant process. That is the wrong way to look at it. Alcoholic relapse needs to be managed like relapse in the case of any potentially treatable disease.
I talked to Herb about Lisa, and her story made him sad. We both agreed that she was never able to develop insight into her disease until the very end. We also agreed that she probably looked at others struggling with alcoholism as different from her. He mentioned that he was part of a new hospital committee trying to develop a program to follow patients after liver transplantation for alcoholism, particularly high-risk patients. That gives me some hope.
12
Nate
The Selection Meeting,
or Who Gets an Organ and Why?
Who shall live and who shall die, who in good time, and who by an untimely death, who by water and who by fire, who by sword and who by wild beast, who by famine and who by thirst, who by earthquake and who by plague, who by strangulation and who by lapidation, who shall have rest and who wander, who shall be at peace and who pursued, who shall be serene and who tormented, who shall become impoverished and who wealthy, who shall be debased, and who exalted. But repentance, prayer and righteousness avert the severity of the decree.
— “UNETANAH TOKEF,” POEM READ AT ROSH HASHANAH AND YOM KIPPUR, AUTHOR UNKNOWN
To hope under the most extreme circumstances is an act of defiance that permits a person to live his life on his own terms. It is part of the human spirit to endure and give a miracle a chance to happen.
— JEROME GROOPMAN, THE ANATOMY OF HOPE
We have liver selection every Wednesday at 1:00 p.m. The key participants include the transplant surgeons, hepatologists, radiologists, fellows, residents, social workers, some of the floor nurses, and our many transplant coordinators. The last are the people who interact with the potential transplant candidates the most during the evaluation, summarize their stories for us, help them get their tests done, and communicate with them day and night. A separate group of coordinators takes care of these patients pre-and post-transplant. The surgeons get a lot of credit, but really, it is these people who make everything happen.
At these meetings, we are given a list of patients being considered for transplant. Usually there are about ten to consider, and each is listed by name, age, BMI (body mass index), diagnosis, and MELD score. One particular Wednesday, I was running the meeting, standing in
for our chief of liver transplant. Most of our agenda that day included patients with MELD scores above 20, and a few above 35. Without knowing anything more about them, we knew that these patients had very dysfunctional livers and were at great risk of dying from their disease. As I scanned the list, I noticed with discomfort that the diagnosis codes for these patients were almost all the same: the majority had ALC, or alcoholic liver disease, with an occasional NASH, or nonalcoholic steatohepatitis, thrown in. (Since better treatments for hepatitis C are now available, this was not surprising. With the number of patients being transplanted for hepatitis C dropping, alcoholic liver disease has become the most common indication for liver transplant, with NASH rising in incidence.) What was making me uncomfortable was that, the whole time we were discussing these patients with high MELD scores and self-induced liver disease, sitting behind me was Nate. I couldn’t help wondering what he was thinking.
DURING HIGH SCHOOL in Des Moines, Nate thought becoming a paramedic would be cool. No one in his family was in the field of medicine. At that point, he wasn’t considering a career as a physician, but he liked the idea of becoming an expert in a field where he could help people. He decided to take a year off before college to train as an EMT—but then he began losing weight.
The weight loss seemed to be a result both of not really having an appetite and of the almost constant diarrhea he had developed. At first, he thought it was nothing major—maybe a bug or some sort of food intolerance. But the symptoms persisted, and despite his best efforts, his weight fell from a healthy 180 pounds to 129. He finally made his way to a local doctor, who ordered a colonoscopy and diagnosed ulcerative colitis. Nate was hospitalized for about a week, placed on steroids, and forced to endure a barrage of tests and procedures. The doctors put him on oral medicine, and his symptoms got better. No one talked to him about what his illness could mean to his future, whether surgery would be needed, what other disease processes could be involved. His symptoms were better, and life went on.
The following year, he enrolled at Drake University, in Des Moines. He lived in the dorms, studied politics, and continued working as a paramedic. By the end of his freshman year, he realized that the idea of being a doctor appealed to him more than that of being a paramedic. As a sophomore, he added premedical courses to his curriculum. He knew it would be a lot of work, as the requirements were daunting—biology, chemistry, organic chemistry, calculus, physics—but it seemed an exciting career to him, fulfilling.
Then, in January of his sophomore year, everything changed. He was at a routine GI appointment and his doctor decided to check some labs. Nate got a call shortly after and was told that his LFTs (liver function tests) were all elevated (which is usually a sign of injury to the liver or the bile ducts in the liver). “Probably nothing,” the doctor said; “maybe a reaction to your medication.” Nate got a CT scan, and was told things looked okay, but that he should get an MRCP (a type of MRI in which doctors look at your bile ducts). He did so, but still thought nothing of it. He was twenty years old, felt fine, and wasn’t jaundiced.
The following Monday evening, he got a phone call that is a textbook example of how not to deliver bad news:
“Hi, Nate. Are you driving right now?”
“Umm, no,” Nate said.
“Are you at home?”
“Yes.”
“Okay. I’m really sorry to tell you that you have this disease, primary sclerosing cholangitis, or PSC, and you’re going to need a liver transplant in the next few months. I’m going to send you to the University of Iowa.”
“What? Okay . . .”
Nate came to the conclusion that he had just been given a death sentence. He turned off all the lights, put on his favorite album (by the Red Hot Chili Peppers), and cried. For an hour.
In hindsight, he admits that he should have known something was gravely wrong. He was very itchy (one of the most debilitating symptoms of PSC), but he attributed it to some sort of allergy. And he was tired, but he figured that was from many late nights out with friends or studying. With his PSC diagnosis, he finally made his way to the University of Iowa and saw a hepatologist, the first medical professional he talked to face-to-face since he got his MRCP. And this doctor looked over his labs and film reports and told him he was fine—for now. Nate had no idea that the average time from diagnosis of PSC to needing a liver transplant is ten years.
The following summer, Nate was back at school taking organic chemistry. He really hadn’t thought much about the PSC since his diagnosis and was busy enjoying college and getting more focused on the idea of a career in medicine. But he was still itchy all over. Also, he found it painful to walk, and he would wake up in the middle of the night from either the itching or the searing pain he’d caused from scratching the skin off his arms, legs, and forehead. After some more searching online, he started taking oatmeal baths or sitz baths every night—for hours, just to try to soothe the agony. He knew he needed help. He made an appointment at the Mayo Clinic. There he learned about his risk of cholangiocarcinoma (cancer of the bile duct), cholangitis (infection), and cirrhosis. He was told he needed an ERCP (endoscopic retrograde cholangiopancreaticogram), a procedure in which a GI doctor puts a scope down your mouth, through your esophagus, stomach, and duodenum; cannulates your bile duct; squirts contrast in to see if there are any blockages; and, if needed, places a stent to promote drainage, which helps with the itching.
Over the next year, his twenty-first, Nate had many ERCPs, all at the Mayo Clinic. Each one seemed to improve how he felt, but in between, his itching would return. On top of that, he noticed he was turning yellow, losing weight, and never hungry. This was becoming his new normal.
Nate adapted to this amazingly well. He developed an interest in travel, one that has stayed with him his whole life. Over the years, he went backpacking through Europe and China, and to Finland and Russia by boat. He knew he was different from his friends and family members, and that he couldn’t “beat” his chronic illness. But his motto was that “if PSC was going to shorten my life, I wasn’t going to shorten it any further myself.” He still remembers his last alcoholic drink: it was a Guinness he poured himself in a Guinness factory in Dublin.
Three years ago, Nate began medical school at the University of Wisconsin. A career in medicine is the ultimate example of delayed gratification, which is a particular challenge for someone with a chronic disease associated with so much uncertainty about one’s long-term health or even survival. Nate is trying to live his life, but at the same time, he wonders about his death. He has generally avoided sharing this with his med school classmates, even though all of them are entering the business of taking care of sick people. Once again, illness finds a way to separate the afflicted from the people around them.
Nate recently finished his surgery rotation and, shockingly, wants to be a surgeon. The training is brutal and interminable, the decision making is challenging and stressful, the failures are crushing, the guilt can be intolerable, but this young man clearly has been bitten by the surgery bug. Nothing else will do for him, even with his unique challenges.
BACK IN THE liver selection meeting, we started talking about a woman in her late thirties with alcoholic liver disease. She had cirrhosis, ascites, jaundice, encephalopathy, and a MELD score of 40. She was close to death. But she also had a supportive family, had insight into her illness, and was committed to turning things around. We decided to list her.
And there was Nate, trying like crazy not to crawl out of his own skin or scratch himself like a madman during the selection meeting, barely able to concentrate, while we were working through a list of high-MELD patients, all of whom had trashed their own livers, and all of whom would be way above him on the transplant list. There he was, working his ass off to get through medical school, so he could learn to help people with illness, but the one thing he likely needed to achieve his goal of becoming a surgeon was a liver transplant. And these people were taking all the good ones.
Ye
t Nate doesn’t look at it that way. He knows that many of these patients are sicker than he is. He doesn’t judge them in the way so many of us do. He wants them to get better. He told me, “They deserve the transplants more than me.” He also told me that he has always believed, “maybe naïvely, that if I need a liver, I will get one.” He also feels lucky that, unlike many of the patients he takes care of, he has an incredibly supportive family and very close friends.
Nate really has two options. Option one is to sign up for a living-donor liver—both his sister and his brother have offered and are in the process of getting worked up. Nate is definitely struggling with the idea of putting them through such a big surgery, one that is filled with risks and uncertainty. Option two is to wait on the list. The good news is he has just been awarded a MELD exception. This means that we wrote a narrative about him, discussing his horrible pruritus (itchy skin), his inability to continue with his job, and his frequent admissions to the hospital. The regional review board, which consists of surgeons and hepatologists from all the transplant programs in our region, agreed to grant him a 22. This means that a majority of liver specialists in the region agrees that the MELD system does not adequately represent Nate’s mortality (or need for a liver) and is willing to have him move up the line to receive a liver in the region. Every three months, we will rewrite the narrative to try to increase the score, and we hope that over a year or so his score will get high enough to pull a liver for him. But there are no guarantees. The board could vote no at any time, and his score could drop down to his physiologic MELD, that is, closer to 15.
How Death Becomes Life Page 22
