How Death Becomes Life

by Joshua Mezrich

  Nate’s story beautifully illustrates the challenges inherent in the allocation of limited resources. I have no problem transplanting livers into alcoholics who have not demonstrated six months of abstinence, if they have good support, insight into their disease, and a commitment to change. We get burned occasionally, but we also have great successes. I also have to believe that we as a society want to transplant people such as Nate, and not make him suffer for so long on a list while he risks losing the opportunity to go to medical school, or travel, or live his life. There has to be a better way.

  One idea would be to automatically give a large MELD exception, perhaps even a MELD score of 40, to the 8 percent of people on the transplant list with biliary diseases such as PSC, PBC, and other rare primary liver diseases that lead to a miserable existence but low MELD scores. For these patients, liver transplant is the only effective way to halt the progression of their disease, so perhaps they should be moved to the top of the waiting list. For secondary diseases of the liver caused by alcohol, fatty liver, and hepatitis C, where preventative, incremental care is the desired treatment and where liver transplantation is just a resetting of the clock, the MELD system could be applied without limiting access to the patients with primary liver disease. (Again, the livers used by the small percentage of patients with primary liver disease would leave plenty of livers to go around for these other illnesses.) Perhaps this would help shift the focus of management to prevention for secondary diseases of the liver rather than thinking of transplantation as a reasonable option when it could potentially have been prevented. Still, if we develop a system of allocation in which we judge one disease different from another, are we going against an ethical norm not to judge people for how they acquired their illness?

  Another option is to get away from an allocation system based entirely on a person’s risk of dying on the waiting list. Perhaps we could somehow incorporate quality of life, age, number of hospital admissions, loss of work, and likely outcome, including likelihood of returning to some level of productivity, into our decision to transplant an organ in someone. For now, though, the system is not about to change.

  Nate was thrilled that he’d gotten his MELD exception. His plan was to finish his third year of medical school and then do his fourth over two years. He hoped that, during that time, his MELD exception score would continue to climb, and he could get a liver transplant, recover, avoid complications, and move on with his life—which he hoped would include a surgical residency (and maybe a transplant fellowship). If, at some point in the next year, his incremental bump in MELD was not approved (which is quite possible), he would try to move forward with a living-donor liver from someone in his family.

  ALMOST TWO YEARS had passed since I first met Nate and heard his story. Since then, I’d watched him valiantly finish his third and fourth year of medical school, and despite my mild protestations, he’d held on to his desire to become a surgeon. He never once asked, “Why me?” or spoke about how unfair it was that he was unable to obtain a deceased-donor liver.

  Then, amazingly, a cousin of his, a young, healthy woman he barely knew, stepped forward to offer him half her liver. A few weeks before the surgery, Nate asked me if I would be his surgeon; I was flattered and at the same time hesitant. I really cared for Nate, and felt like a mentor to him, but I wondered if I would be able to be aggressive enough, to take the (calculated) risks and make the split-second decisions I might need to during the surgery, or would I hesitate, filled with thoughts of what a complication might mean to his future?

  Before I could answer, Nate threw in this little teaser. “Oh, by the way, my class chose me as the graduation speaker! I’m going to talk about my experiences with liver disease and the transplant. The graduation is seven weeks after the transplant. I should be ready by then, right?”

  I CHIPPED MY way around Nate’s massive liver, painstakingly working on one side and then the other, making a little progress here, a little there. His liver was so enlarged from his PSC, it took up almost his entire abdomen. I was making decent headway until the end, when I pulled just a little too hard, and blood erupted. For a brief second, the thought I can’t believe I just killed Nate actually ran through my head—and then I pulled myself back into surgeon mode. I had options. I had been smart, had made my way around his cava below and above as early as I could in the operation, just in case this happened. Now I kept pressure on the tear in the hepatic vein with my hands and let anesthesia know my plans. As I looked up, I noticed Nate’s blood pressure on the monitor: fifty-four over thirty. Not good. Anesthesia poured in fluids, and I placed the lower clamp on the vena cava and then slid the large Klintmalm clamp around the upper cava. All the bleeding stopped. I carefully cut out the liver, taking care not to cut the cava out with it. The timing was perfect: the new liver, then being prepped on the back table, was ready for implantation.

  Luis and Yucel, two of my partners, scrubbed in at this point, and we brought the new liver onto the field. They plopped it down in the cavity, where it took up less than a quarter of the space Nate’s old liver had required. We sewed it in, and everything went perfectly. As I watched the liver go from its pale brown color to pink, and saw bile dripping out of the duct, I felt such a sense of joy. Nate’s hell was almost over.

  I went down to talk to his family, pictures of Nate’s old liver, and even the new one, in hand. They were so thrilled they erupted in cheers. I felt like a conquering hero. This is one of the best parts of being a transplant surgeon. Transplant patients usually have lots of family around, and there is nothing better than seeing them explode with happiness when you tell them how smoothly everything is going.

  The next few days went well for Nate. He woke up, had his breathing tube removed, and came off the medicines that were supporting his blood pressure. He looked tired but also thrilled to be through the operation. His ultrasound looked great—all the blood vessels were wide open—and his liver numbers were normalizing. There was one weird thing, though: He had a fever when he hit the ICU after surgery, which in itself is not that abnormal. But blood cultures taken during that fever very quickly grew out fungus. Hmm. Nate’s gigantic liver, with all the blockages of his bile duct, must have been filled with that nasty bug. We started him on antifungals, and held our breaths.

  Post-op day five, Sunday morning: I noticed that Nate’s labs were up a bit. Not horribly, but definitely up. It was probably nothing. I touched base with one of my fellows, who had already ordered an ultrasound. I checked the computer multiple times over the next hour, waiting for the films to come up, but nothing appeared. I was annoyed that the ultrasound hadn’t happened yet, but at the same time I felt confident that it wouldn’t show anything abnormal. Back at home, I tried to hang out with my kids, but my mind kept wandering back to Nate.

  Then I felt my phone vibrating in my pocket, announcing the arrival of a new text. I pulled it out and took a look. It was from Nate.

  “Dude, my artery’s out,” he said. That had to be the first time a patient had let me know something like this. Nate was watching while they did the ultrasound, and had realized they couldn’t find the artery to his liver. It must have clotted off.

  My stomach jumped into my mouth. I knew immediately what this meant for Nate: he was screwed. As I made my way into the hospital, thoughts of all the nasty complications that awaited him swirled through my head. By the time I got there, he was already in the operating room.

  Sure enough, the hepatic artery that we had sewn together from his own hepatic artery to the donor liver artery was clotted. The artery is the main supply to the bile ducts in the liver, and when it clots off, it almost always ruins the liver. We cut out the sutures that we had placed to sew the artery together and pulled a bunch of clot out of the lumen. We sent the clot and a rim of arterial tissue at the anastomosis site for a culture. We then cleaned the artery out with some catheters, squirted in some clot buster medication, and sewed it back up. Then we started infusing some blood thinner through h
is IV. As I watched the blood thinner drip into his veins, I knew what would come next: bleeding.

  One other thing we did was relist Nate for another liver. For patients who have an artery clot in the first two weeks after liver transplant, the United Network for Organ Sharing, or UNOS, will allow them to be listed at a MELD of 40, meaning they will be at the top of the list for a new liver. The challenge now was, if the artery stayed open, should we retransplant, or see how things went?

  I immediately wanted to retransplant. We’d gotten away without doing so in the past, but wouldn’t a new liver give Nate his best shot at becoming a surgical resident? Was I thinking clearly, or was I conflicted because of my relationship with him? I wasn’t sure.

  Nate’s artery stayed open, but it turned out to be the least of his problems. Over the next few days, three things happened. He started bleeding, his liver function tests started to go up, and his intraoperative cultures grew out more fungus.

  I decided to take him back to the OR to wash out the fungus, get a liver biopsy, see what was bleeding, and look at his artery. Nate was not thrilled about this, but he felt like shit. He asked me if he was going to be okay. I hoped so.

  In the OR, the liver looked pretty good, actually. I cleaned out some blood and grungy tissue and did a biopsy. But here’s the kicker: his bowels were so swollen that I couldn’t get him closed. I packed his abdomen with sponges and a suction device and brought him back to the ICU sedated and intubated. What followed was one of the worst weeks of my professional life, and no picnic for Nate.

  We took him back to the OR every two days for repeat washouts and attempts at closure. In the meantime, his biopsy came back showing severe rejection and, at the same time, his new intraoperative cultures showed fungus and a variety of other drug-resistant bacteria.

  I kept trying to put on a positive face for Nate’s family, but I really didn’t know how things would play out. We were trying to walk a tightrope, increasing his immunosuppressive meds at the same time that we increased his antibiotics. We walked the same tightrope with his blood thinner, trying to find a dose at which his blood would be a bit thinned but at which he wouldn’t bleed.

  Finally, on the fourth try in the OR, we got him closed. The breathing tube came out the next day. I expected the first words out of Nate’s mouth to be “What the fuck did you do?” but he was too tired and weak to utter such a long sentence. Thankfully.

  I would like to be able to say that everything went smoothly after that. But that wouldn’t be entirely truthful. Somehow Nate hung in there, despite numerous procedures, consults, needle sticks, scans, biopsies—you name it, he had it done. I joked with him that he would be the most experienced intern who ever existed, but I did start to wonder if it was realistic to think he’d even make it out of the hospital.

  After a few weeks, Nate went home for about two days, but then came back sicker than ever. More tubes and drains were stuck in. Now we had a new problem: bile was leaking out of the ducts that drained his liver into his bowel. We put a tube through his liver, through one of the ducts, and into the bowel, and drained his bile into a bag he would carry around. He hung in there, somehow. He looked like a skeleton, with sunken, yellow eyes. As his graduation day approached, we all wondered if he would make it to the dais.

  Union South Varsity Hall, May 12, Medical School Graduation

  I felt nervous as I looked at the lineup of medical students in their caps and gowns, waiting to march into the hall to receive their diplomas. It didn’t take me very long to find Nate—he looked pale green and shaky, and was the only one using a walker. I wanted to believe he was just nervous, but I knew that wasn’t the case. I went to give him a hug and could feel his ribs beneath my hands. I asked how he was feeling, but I didn’t really hear his answer. I asked if he was ready to deliver his speech. He said he thought so. His wife, Ann, had a copy of his speech, which she’d finish delivering in case he collapsed in the middle.

  Once they all marched in, I went to the back of the hall. There must have been a thousand people in there, and I could just make out Nate, sitting onstage to the dean’s left. I watched the dean say a few words and a few other speakers give their words of advice, words I have heard so many times—be nice to the nurses, bring cookies; the patients come first; blah, blah, blah. It was all good advice, but so predictable. Then it was Nate’s turn.

  He slowly walked over to the lectern, looking quite unsteady. Even though I knew he was weak, and I could see his hands shaking as he held a copy of his speech, when he began speaking, his voice sounded surprisingly strong and confident.

  Then Nate gave one of the most inspiring graduation speeches I have ever heard, one filled with the lessons he’d learned during his illness. Despite everything he had gone through, he focused on the importance of hope.

  Hope, he said, “may be the most powerful currency we carry as doctors.” It was hope, he said, that had allowed him to survive for two years on the waiting list, hope that had let him take that leap of faith and undergo a liver transplant at such a young age. His illness had separated him from his classmates—sure, he’d finished med school, but his experience had been so different from theirs. When they went home to study, or out to the pub to get a drink after class, he would sneak off to the third floor of the hospital to get hooked up for a plasmapheresis session, in which his blood was drawn out his arm through big needles and cleansed in a machine. He had spent the majority of the last two months in the hospital, just as his classmates had, but his time had been spent lying in a hospital bed, or in the OR, or in procedure rooms. While his classmates had recently enjoyed the match process, in which they opened envelopes and found out where they would spend the next three to five years of their lives in their training programs, he had simply hoped he would be alive for that long.

  “Hope comes in many different forms,” he said. “For some, it’s simple. Hoping that their cough goes away or isn’t the harbinger of something more serious. Hoping that their pain is relieved. Or just hoping that their physician will be compassionate and understanding. For other patients, their hopes loom much larger. It’s hoping for a cure. It’s hoping for more time with family and friends. Or, for me, hoping that transplant would offer my wife and me a chance at a more ‘normal,’ healthy life.”

  He continued: “Your patients will be looking to you to offer hope in their darkest moments. Even when things aren’t going as planned, you can help your patients to hope for simple things, like better lab results, an expanded diet order, or a better scan. And when the options for treatment run out, hope need not. Our hopes can change. From hoping for cures and treatment to hoping for more comfort, an end of suffering, or a chance to return home.”

  Nate’s story wasn’t quite over yet. A few weeks later, he came back to the hospital with a fever. His artery had clotted again. Four months after his first liver transplant, he underwent a second one. It was a deceased-donor liver from a healthy young donor who had died unexpectedly. Despite everything he had been through, Nate flew through this one. On the first postoperative day, he looked better than I had ever seen him. His hell is over now—until next year, when he starts his surgery residency.

  13

  Michaela

  We Are All the Same on the Inside

  The thing to do, it seems to me, is to prepare yourself so you can be a rainbow in somebody else’s cloud. Somebody who may not look like you. May not call God the same name you call God—if they call God at all. I may not dance your dances or speak your language. But be a blessing to somebody.

  — MAYA ANGELOU

  What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.

  — RALPH WALDO EMERSON

  The thing about accidents is, you don’t know they’re coming. Still, Lori sensed that her twenty-six-year-old son wasn’t going to be around long, even though he was turning his life around. Every night, C.L. would lie on her bed and they would talk. He had told her he needed to get ou
t of Rockford, get away from the life he’d been living. He had posted the same sentiment on Facebook a few weeks before. He told his mom that no matter what happened, he would always be with her. That night, it was as if she could hear his thoughts, and she felt compelled to ask him how he wanted to be buried.

  C.L. looked at her, thinking about it for a minute. He didn’t protest or ask why she would bring something like that up. “Why don’t you cremate me?” he said. It was information she needed, and C.L. seemed to understand that.

  It is hard to know exactly what happened the night of the accident. It was around 1:00 a.m., November 4. It’s unclear whose fault it was, who started it, but at some point, there was a fight at a nightclub where C.L. was hanging out with his friends. Someone pulled a gun. There was shooting. C.L. and his two friends ran out to the parking lot. With the sound of gunfire piercing the night sky, they made it into their car. C.L. ended up in the backseat. At some point, he must have noticed that his friend in the passenger seat had been shot. As they careened out of the lot, the bullets kept coming. They sped off in total chaos, but the driver lost control of the wheel and the car crashed at high speed into a tree. Everything went black for C.L.

  Lori spent a week in the hospital with her son. At one point she felt she could hear him saying he didn’t know what to do. She saw a tear come down his left cheek. I’m tired, Mom. I don’t want to leave my kids, she imagined him saying. “I know,” Lori said. “I know you are.” That whole week was a blur for Lori. She remembers sitting with C.L., praying a lot, touching his head, comforting him, trying to understand what he wanted her to do.

  Surgical Interest Group, University of Wisconsin, Fall

  I was sitting at the front of the auditorium, looking at my phone while vaguely listening to various speakers talk to medical students about the donation process, when I heard a young, fresh voice coming from the dais.