How Death Becomes Life

by Joshua Mezrich

  He fought these feelings for as long as he could, but one particularly bad morning, he dragged himself to the bathroom, looked at his gaunt face in the mirror, and was horrified to see bright yellow eyes staring back at him. He was smart enough to know that this was not a good sign.

  As a general rule, turning yellow is almost always bad, and painless jaundice, the condition of turning yellow without belly pain, is particularly ominous. It usually means one of two things: either some sort of cancer is blocking your bile duct (for example, pancreatic or bile duct cancer) or you are in liver failure. (If you do feel pain, you might be lucky enough to be diagnosed with choledocholithiasis, stones in your bile duct coming from your gall bladder. Although dangerous, choledocholithiasis is typically treatable with the removal of the gall bladder and the placement of a stent in your bile duct—no big deal in comparison to cancer and liver failure.)

  Jason saw his primary care doctor later that week—it turns out that when you tell your doctor you’ve turned yellow, he’ll fit you into his otherwise full schedule—where he got a bunch of lab tests, a CT scan, and an MRI. He then saw a hepatologist (liver specialist) the following week. It was there that he found out he had advanced liver disease, caused by primary sclerosing cholangitis (PSC), a rare autoimmune disease in which a patient’s own immune system attacks his bile ducts, leading to chronic liver disease, cirrhosis, and the need for liver transplant to survive. He also learned that inflammatory bowel disease (including ulcerative colitis and Crohn’s, the condition Jason had) is associated with the development of PSC, and that he was probably going to need a liver transplant someday.

  Jason took all this in stride. He was an extremely mellow, levelheaded person. If he was scared, he definitely hid it from his family. Over time, his health stabilized, and he embraced life just as everyone in his family knew he would. He carried his burden with grace and courage, worked his way up to becoming a high school teacher, and continued traveling the world. He even took two high school classes on trips around Europe, acting as their organizer and tour guide. He read voraciously and loved nothing more than inspiring young students to appreciate the world around them.

  Unfortunately, his illness didn’t really care what kind of guy he was. Jason’s energy began to deteriorate. He tried to push through it but, eventually, he could barely drag himself out of bed. His body was swelling up everywhere, and the jaundice had come back. He spent two weeks reading about PSC, liver disease, and liver transplantation, and by the time he made it to my transplant clinic that Thursday morning, he was far more educated on the topic than he had ever hoped to be.

  Even though I was almost two hours late, I took my time getting to know Jason. He had such a positive take on life, and he was a natural teacher—something that became obvious when he tried to educate me on Napoléon, Scotland, and the rest of European history I knew so little about. He asked me about my life, what it was like to be a surgeon, what the training was like, what my strategies were for teaching the medical students and residents. I really enjoyed talking with Jason, and I could imagine having him as a friend. (I don’t normally relate to my patients in this way, and that’s probably for the best.)

  I told Jason about the waiting list, the liver transplant operation, the serious risks, the recovery. We discussed the possibility of a “living donation,” in which a family member or friend gives the recipient half his or her liver, and of a “deceased donation.” Given the severity of Jason’s illness, his chances of getting a liver from a deceased donor seemed high. Once all his family’s questions were answered, I left the room. My life went on, and I forgot about Jason. His life remained on hold.

  Then, a few weeks later, in the dark of night, I got a 2:00 a.m. call from Angela, one of our organ procurement organization (OPO) coordinators (the OPO manages the deceased donors and its members coordinate organ allocation): “We have a liver offer. It’s blood type A.”

  I sat up in my bed. I usually have some sense about who is at the top of each blood type list, particularly when we have a patient with a high MELD score. This particular week, Jason had shown up at an outside hospital with a MELD score of 37, which put him at the top of our list. I knew he would pull one soon.

  “Tell me about it,” I said to Angela.

  “It’s a brain-dead male in his sixties,” she said. “Died from a stroke.”

  I had been hoping to get Jason a perfect liver, maybe from a twenty-two-year-old who’d died in a motorcycle accident or from a gunshot wound to the head. Not that a sixty-something-year-old liver is bad—we use livers from donors in their seventies all the time. As long as the pre-implant biopsy looks good, the liver should perform fine. The liver is a miraculous organ, one that “regrows” and heals itself. Still, in general, the older the organ is, the less life it has left in it.

  Unfortunately, since I had last seen him, a few weeks before, Jason had become very sick. In fact, he was at the point where, a few days from now, he might no longer even qualify as a candidate. If I skipped him to wait for a younger liver, I might be signing his death warrant. And who knew when the next liver might come? And who was to say it would be better than this one?

  One of my mentors, Stuart Knechtle, used to tell me that when it comes to allocating livers, when a recipient’s name gets to the top of the list, and a liver becomes available, that’s their liver. The allocation system is designed to give the next liver to the sickest patient. Besides, plenty of data show that when transplant centers skip over a high-MELD patient, for whatever reason, that patient has a much higher chance of dying while waiting for another organ.

  “Okay, Angela,” I said. “I’ll take it.”

  I spent the next few hours on and off the phone, speaking first with the transplant coordinator. (The transplant coordinator is different from the OPO coordinator; while the OPO coordinator deals with the deceased donors, the transplant coordinator works with our transplant team to coordinate the recipient side and help take care of the recipients before and after transplantation.) I then called the hospital where Jason was staying and had him transferred to our hospital. Then I called the fellow, Silke, who was working with me on liver transplant, to let her know Jason would be coming in. Then I was back on the line with the transplant coordinator, who updated me on when Jason would arrive. Then back with the OPO coordinator, who told me when the organ procurement would take place. Then the OPO coordinator again, when the procurement got pushed back an hour. This is how it always goes.

  I went to see Jason around midday, to talk to him about the upcoming transplant. He smiled when I walked in. His parents and siblings were happy to see me, as he had told them he was hoping I would be his surgeon.

  Jason had undergone a few bowel resections to treat his Crohn’s disease, and had been on steroids for a while to treat this inflammatory condition. He was thin but healthy—despite his completely failing liver and the recurrent infection in his bile ducts—for one of our patients. I had reviewed his films carefully, examining the cross sections of his liver over and over again, identifying his hepatic artery, his aorta, his shrunken liver, and most important, his portal vein. I traced all the little branches of the portal vein, looking for any large varices that might have formed from his cirrhosis. As I committed his digital anatomy to memory, I could truly picture what these structures would look like when I encountered them in the OR, what tissue planes I would need to get into as I dissected around them with my instruments, where I might encounter side branches and varices. Getting in the right tissue planes is one of the keys to being a good surgeon. The best surgeons always know where to go, and find the spots to dissect where they have minimal bleeding and avoid injuring any structures. Those less gifted are constantly encountering bleeding and other badness. Some of this ability is teachable, some comes with experience. Some surgeons just have it (and some don’t). Whether you have it or not, preparation is critical.

  Jason’s liver did have some decent-size branches off his portal vein, a piece of info
rmation I tucked away in my memory bank. His liver was quite big, with the left lobe reaching around the spleen. But it also wasn’t the massively swollen organ we normally see in our patients with acute alcoholic hepatitis. I was excited to get the chance to return this young teacher to the classroom.

  Operating Room 16, 4:00 a.m.

  “Wow. I can’t believe how stuck this is!” I told Silke, over the melodious sounds of hip-hop playing on the OR stereo system.

  I probably should have expected this—PSC is an inflammatory disease, after all—but I hadn’t done a transplant for this illness in a while. I always tell my fellows that liver transplants, and particularly those that occur in the middle of the night (i.e., almost all of them), require a vast amount of internal fortitude in a surgeon. You have to keep your head straight, avoid stress and frustration, stay loose. So much of it is about managing expectations, taking your time, letting things develop.

  Overall, in Jason’s case, we stuck to the plan—other than throwing in a splenectomy free of charge when, despite our best efforts, a small, inadvertent tear in the capsule that surrounds the spleen wouldn’t stop bleeding. After a bit of time spent in the lounge, waiting for the liver to kick in and the bleeding to stop, we returned to the OR, finally ready to close up. We irrigated him and started closing. Everything looked great. I was tired but happy. I looked at the clock: 11:15 a.m. I needed to go talk to his family and then run down to the clinic. I was only three hours late. Not a record.

  Jason’s postoperative course was a bit . . . complicated. I had to take him back to the operating room a couple of times—first, after his bowel anastomosis broke down where I had rerouted things to plug in his bile duct, and again when his wound came apart. But he handled it with calmness and grace. Despite the complications, he went home a mere three weeks after his transplant, which is a testament to his strength and attitude, and to the support of his family. Over the next few months he dealt with some issues. First, he had to self-administer IV antibiotics at home. Then he suffered a bout of cytomegalovirus (CMV), an infection some of our patients get from the immunosuppression. This required some readmissions and more IV meds. Yet he never appeared down or lost his sense of humor. I saw him a few times in clinic, before he switched over to the hepatologist. After a few months, I stopped worrying about him.

  Everything went great for Jason after that—for a few years. He got back to his teaching and was able to make some trips around the country. He enjoyed his family, particularly two nieces born after his liver transplant. But he did have some problems. He suffered from a lot of back pain and osteoporosis (bone disease leading to bone loss), caused by his Crohn’s disease and made worse by the immunosuppressive drugs. He broke his legs in a fall, which put him in a wheelchair for a time. Through it all, he remained positive. He kept reading and learning. He got his master’s degree, and even started working toward a doctorate in education. Then, for some reason, he started to turn yellow again, and became fatigued. All the original symptoms came back. Something was wrong with his new liver.

  We did a workup on him, looking for a recurrence of his PSC, but could find nothing. His ducts looked normal, and the spot where we’d sewn his bile duct to his bowel was unobstructed. All his blood vessels looked perfect. The liver was perfused beautifully. His biopsy showed a lot of scarring and inflammation, but no matter what we tried, we couldn’t reverse it. Finally, about four years after his transplant, he ended up back in my clinic for reevaluation. He needed a new liver. (Of course, I was late to his appointment.)

  That last appointment with Jason was an interaction I will always remember. We talked about how he had lived his last four years. He didn’t complain, even when I asked him about all the complications he had suffered through. He talked more about the good times—the teaching, his students, his love of Star Wars, and, of course, Scotland. He’d given me a copy of one of his favorite books, How the Scots Invented the Modern World: The True Story of How Western Europe’s Poorest Nation Created Our World and Everything in It, by Arthur Herman. I had to admit to him I hadn’t read it yet, but I promised I would. I asked him if he had been back to Scotland. He had wanted to go, but the recurrence of his illness had thrown a wrench in that plan. I told him he would get to go after he got another liver. He smiled and said, “Yeah, I hope so.” But something about his look told me he knew he wouldn’t. Jason had suffered a lot in his young life. He’d been dealt a worse hand than most of us. You wouldn’t know it from his attitude, but it was the case. Unfortunately, now the time had come to show his cards. He was at peace with it.

  We do a lot of redo liver transplants at our program, but they are much harder. The liver tends to get stuck in there, and blood loss can be extreme. Still, there was no reason to think Jason couldn’t get through this operation. Either way, he was prepared.

  Not long after our office visit, Jason was called in. A liver was available; it was a good one, a young one. I happened to be out of town at the time, and one of my partners took him to the OR. Sadly, it was one of the bad redos. The team spent hours trying to hack Jason’s liver out, and the trouble started early. The bleeding was immense, and his upper cuff was torn. With heroic effort, he did make it out of the OR many hours later, hanging on to life by a thread. Over the next few days, he was on life support, as one organ after another failed.

  I got to see him during that period, but in no way did he resemble the person I had seen in clinic just a few weeks before. His body was swollen beyond recognition, with tubes and lines coming out of every orifice. Jason never woke up, dying a couple of weeks after his surgery, with his entire family at his bedside. I hope he didn’t suffer.

  I wish Jason had gotten a better liver the first time. I wish I had been there for his second transplant, though I don’t think for a second that I could have done the job any better. I feel sad that Jason had to be afflicted with Crohn’s and PSC—sad in a way that Jason never appeared to be. He seemed so much stronger than I ever would have been. I suppose I should be thankful that he got a few good years after that first liver, years during which he felt entirely healthy. The reality is, although we have come a long way from 1963, when Starzl put in that first liver, we still have a way to go. We have many victories, but the losses are the ones we never forget. They torture us, but also keep us striving to do better.

  I took a look at the Scots book and promised myself I would read it sometime, but so far, toasting Jason has had more to do with drinking Scotch. Thanks, Jason, for teaching me a little bit about strength, grace, and living in the moment. In a different world, at a different time, we probably would have been friends. I’m glad I met you.

  11

  Lisa and Herb

  Should We Do Liver Transplants for Alcoholics?

  It is difficult to feel sympathy for those people. It is difficult to regard some bawdy drunk and see them as sick and powerless. It is difficult to suffer the selfishness of a drug addict who will lie to you and steal from you and forgive them and offer them help. Can there be any other disease that renders its victims so unappealing?

  — RUSSELL BRAND, RECOVERY: FREEDOM FROM OUR ADDICTIONS

  Alcohol ruined me financially and morally, broke my heart and the hearts of too many others. Even though it did this to me and it almost killed me and I haven’t touched a drop of it in seventeen years, sometimes I wonder if I could get away with drinking some now. I totally subscribe to the notion that alcoholism is a mental illness because thinking like that is clearly insane.

  — CRAIG FERGUSON, AMERICAN ON PURPOSE: THE IMPROBABLE ADVENTURES OF AN UNLIKELY PATRIOT

  “How many of you think we should do liver transplants for alcoholics?”

  About half the hands were slowly raised, while the other members of the class looked around nervously. These were third-year medical students, and I was giving my monthly lecture on organ transplantation.

  “How many of you think the potential recipient should have six months of absolute sobriety before being offered a tran
splant?”

  This time, the majority raised their hands, and a look of confidence could be seen on most of the students’ faces. Obviously, patients should be able to remain sober if they wanted to receive the incredible gift of a liver transplant, the ultimate life-saving resource.

  “But what if they won’t live six months? What if they are going to die in the next two weeks? What if the patient is a thirty-seven-year-old mother of three, or a twenty-six-year-old college graduate who didn’t realize the damage he was doing to his liver? Would you ignore the existence of the very young children when you made the decision to let their mother die? Would you stand over the young man, with his parents watching, and tell him you could save him but you’ve decided he doesn’t deserve it?”

  I continued: “How many of you think alcoholism is a disease?”

  Almost everyone raised his hand.

  “What do you think the recurrence rate of this disease is after liver transplantation?”

  A few people guessed about 20 percent, which is roughly accurate.

  “How many of you think hepatitis C is a disease?”

  Everyone.

  “And the recurrence rate of that after transplant?”

  One hundred percent.

  “So, should we transplant in the case of hep C? Couldn’t you say the same thing for NASH?” I asked them, referring to the fatty liver disease caused not by alcohol but by obesity, diabetes, and high cholesterol. “Should we not perform transplants in obese people? Or what about patients in renal failure caused by poorly managed diabetes or hypertension?”