Michaela’s life has changed in so many ways since her transplant. She has a real purpose. She owes that to C.L., but she doesn’t see it as a burden. She has spent the last few years telling her story wherever people will listen—at schools, hospital functions, community events. Her goal is to get people to sign up to be organ donors. She posts pictures with Lori and her family, and even pictures of C.L., listing them all as family. A few people have questioned what it feels like to get a liver from a black man, a liver from a “bad guy,” from someone who was in prison. But Michaela has used these questions as teachable moments: we are all the same on the inside.
Part V
The Donors
Show me a hero and I’ll write you a tragedy.
— F. SCOTT FITZGERALD, NOTEBOOK E (1945)
Don’t think of organ donation as giving up part of yourself to keep a total stranger alive. It’s really a total stranger giving up almost all of themselves to keep part of you alive.
— AUTHOR UNKNOWN
14
As They Lay Dying
Donation gives a nobility to the final moments. It is not just a pulling of the plug, a removal of machines. It is an act of extending the gift of life, a giving back, a passing on. It is a way to affirm life, to shout a note of victory into the face of death . . . We are all given the gift of life, and to share this precious, this fragile gift, is truly one of the ennobling acts of life.
— REV. EDWARD MCRAE, IN MEMORY OF HIS SON, STUART MCRAE
In order to do a transplant, before anything else, we need to have a donor, living or recently deceased. There may come a day when we can grow an organ in a dish, print one, make one mechanically, or take one from a pig, but until that day comes, we continue to rely on the altruism of our donors and their families. For the last ten years, I have done hundreds of transplants, with many successes and a few poignant failures, and I have been amazed at the strength of our patients and their families. Yet no one has impressed me as much as our donors.
There are two types of deceased donors. The most common is the brain-dead donor. These patients may have suffered a heart attack, stroke, asthma attack, accident, or trauma that led to loss of blood flow to the brain, causing it to swell. The cause of brain death is often hypoxia (loss of oxygen to brain tissues from shock, cardiac arrest, or low blood pressure from bleeding). The brain is encased in a hard shell (the skull), and if it swells to the point where it can no longer fit into that shell, it herniates out (exits the skull). In some cases, the brain may swell enough to block blood flow to it without herniation. Either way, the cells of the brain die, and the patient can be diagnosed with brain death. In brain-dead patients who are kept on a respirator, the heart continues to beat, the kidneys continue to make urine, the liver continues to make bile, but the patient is legally dead. Because of that, we can remove his organs, including the heart, in a controlled fashion, waiting until the very last second to cross-clamp the aorta and stop the heart. In this scenario, the organs remain well perfused until we can get them ready, which involves flushing the blood out and pouring ice on them to reduce their metabolic demand, in essence putting them to sleep until we are ready to plug them into their new owners. Yet only a small percentage of potential donors become brain dead.
The second type of deceased donor includes patients who have suffered the same heart attack, stroke, asthma attack, accident, trauma, or what have you, and have reached a point where they would not survive in a way that would be compatible with their wishes—perhaps they have massive brain damage, an incredibly dysfunctional heart, lungs that can’t support oxygenation. The family (or, in rare cases, the patient) makes the decision to withdraw support by the removal of the ventilator and the shutting off of the pressors (the medications supporting blood pressure). Only if the patient dies quickly are we able to procure his organs for transplant. At our program, we will wait thirty minutes for the patient’s lungs, liver, and pancreas, and up to two hours for his kidneys. We typically will not use the heart from these types of donors, as we think that waiting for the heart to stop beating prior to its removal will irreparably damage the organ. For those who don’t die within the allotted time, our procurement team will fly back home empty-handed, and the patient will be moved back to the ICU, where he or she will go on to die over the next day or two. We call this process of organ donation DCD, or “donation after circulatory death” (as opposed to DBD, or “donation after brain death”).
If DCD patients are going to die anyway, why don’t we just take their organs out while they are intubated, under anesthesia? This is a complicated question. These patients, before support is withdrawn, are still alive by any definition of the term. They may be terminally ill, about to die, or irreversibly injured, but they are still alive. Typically, their families will still be with them and will want to stay until their loved ones are declared dead. (With brain-dead donors, the families have usually left.) Families of DCD donors will even be allowed into the OR to stand by the donor’s head, even though the donor is prepped and draped in a sterile, cold room. The second these donors are declared dead, the families are whisked out of the room, and the transplant team rushes in to procure the organs. (After all, time is of the essence at this point.) If we were to remove all their organs, particularly their heart, before they reached circulatory death, then the cause of death would be “organ donation.” Contrast this with the brain-dead patients, who are legally dead even though their hearts are still beating.
When I think about my experiences going on procurements, a few stories stand out. There was the little boy with a rare throat infection. He was two years old, just about the same age as my older daughter at the time. He had been entirely healthy, with a brother, a loving family, and all the dreams and imagination and joy little boys (and girls) experience. He’d gotten sick a few days before. At first, it didn’t seem like a big deal, just a sore throat. But by the time he started wheezing, drooling, and struggling to breathe, and his parents rushed him to the hospital, it was too late. His little throat had swollen shut, and no matter how he tried, he couldn’t get enough air down that narrow tube to fill his lungs with oxygen. His brain screamed out for more. His little heart tried and tried, but it just couldn’t keep pumping—the heart depends on that air, and the oxygen it provides.
At the hospital, they snaked a small plastic tube down the boy’s narrow airway, but his heart was barely working. They got it going again, but his brain had had enough. It was swollen and injured; it couldn’t come back. Hooked up to a machine with breathing tubes and feeding tubes and IVs, the boy was technically alive, just not in the way his parents would have wanted him to live. But at least he could save some others.
Because he was not brain dead, he would be a DCD donor. His family came into the OR with us, to be with him until the last second. (Back then, we would stand in the OR with the family while life support was withdrawn, trying to blend into the walls while the family said their last good-byes. Nowadays, we wait outside in the hall or in an adjoining OR.) His parents played his bedtime music and read him his favorite bedtime story. His stuffed animals were all there as well, tucked into the crib his family had brought him in on.
The boy’s doctor gently removed the breathing tube from his swollen throat, letting his mom and dad hold him close and kiss his face and cheeks as he sputtered and gasped his last couple of breaths. Then they laid him down on the table, kissed him again, and walked out—and we rapidly cut him from stem to stern and removed his beautiful organs. Initially, we were holding back tears (or not holding them back). The second we started his operation, this little boy became our patient, our donor. We had to get the organs out perfectly. We owed that to him, his family, and our recipients. Everyone involved went home and hugged their children a little tighter that night.
I still remember my first procurement as a fellow. We flew up north to get some organs. The donor was a man in his sixties who had died of a heart attack and was brain dead. When we got up there, part of o
ur team went to the OR to get things set up, and Mike (our physician’s assistant and procurement team leader) and I went to the ICU. I thought we were just going to talk to the nurses there and maybe examine the donor, but then Mike told me we would be speaking with the donor’s family.
I felt my stomach go into my throat. Imagine a family sitting together by the bedside of a loved one in the ICU, mourning, and then having these vultures come in and tell them they have to take away their dad, brother, son, friend, to harvest his parts to be sent off for use by people they don’t even know. (As I mentioned earlier, we don’t use the word harvest in organ transplantation anymore; we prefer the more benign, less vulture-like procure.)
That day, we walked into the ICU waiting room to find about a dozen family members and friends of the donor. Despite experiencing perhaps the worst tragedy of their lives, donor families often get so much from being able to donate their loved one’s organs. That day in the waiting room, some were crying, some laughing, some holding hands. When they saw us come in, their expressions lit up.
Mike started out by thanking them for their gift, and then told them how the process would work. He highlighted how many lives their loved one would be saving, and how that would happen that night and the next morning. They hung on to every word. When he finished, they asked so many questions—who were the recipients, where were they from, how long would their surgeries take, could they meet them, would the organs start working right away? It was a beautiful encounter. It wouldn’t bring their loved one back, but his legacy, all the lives he would save, would make his death mean something. We asked the family about the donor, what he liked to do, his hobbies, and how he might want to be remembered. Despite the fact that we were about to cut him up and parcel him out to others, I couldn’t imagine a more respectful way to honor this person. At the end, we all hugged. Then they said their good-byes to the donor, and we wheeled him out of the ICU.
Before we start a procurement we traditionally pause and say something about the donor. It usually involves the OR team, often the nurses from the ICU who have been caring for the patient, the anesthesiologists, and the surgeons. We will often read a passage or a poem, or express thoughts that may have been provided by the family. It is usually silent after that. Many of us will have tears in our eyes, but we’ll also feel energized, elated even. We are the stewards of this donor’s organs, the ones tasked with helping him or her make these supreme gifts possible. It is a heavy responsibility, but one we take on with the utmost respect and pride. In every other area of medicine, we spend our lives trying to fight off death, defend our patients from the ravages of disease, alleviate suffering brought on by cancer and heart attacks and trauma. Transplant is different. In this field, we take from death. Death is our starting point.
When people think about deceased organ donors—we also don’t use the ghoulish, clinical term cadaveric—they probably think about those who die in motorcycle or car accidents or young people who suddenly have a brain bleed out of the blue. But so many donors die from medical conditions, such as the kid who dies from an allergic reaction to a bee sting or a peanut allergy. They die in situations that never should have happened—the baby donor who dies when his dad rolls over on him while they’re sleeping; the young man who takes one false step in his house and tumbles backward down a staircase; and seven-year-old Caleb, whose normal day turned into the worst nightmare for his family.
Caleb was the middle child in a family of five, two years younger than his hero, Cole, and two years older than his sister, Katie. He was a happy, kindhearted kid who loved to hug everyone in his family every chance he got. This particular day, a Sunday in December, started off a bit too early. The children’s cousin was staying over, sleeping in the room Cole and Caleb shared, and the boys, excited to start the day of play, as most young children are, got up at the crack of dawn and came into the room where their parents, Dan and LeAnn, were sleeping. LeAnn told the boys to go back to the living room and play quietly until it was time to get up for church. She suggested they do some coloring, or whatever they wanted—as long as they didn’t wake their sister. Then she drifted back to sleep—only to wake up when she heard Caleb urgently pulling at the sheets on Dan’s side of the bed. He was choking on something; she couldn’t quite understand what he was saying. At first he was talking, but then he couldn’t make any sound.
They called 911 and brought Caleb downstairs. The ambulance took forever, probably because of the ice storm of the night before. Those minutes of waiting were excruciating for Dan and LeAnn. They kept thinking of throwing Caleb in their car and driving him to the hospital themselves, but then thought better of it. By the time the ambulance arrived, Caleb looked blue. They could tell from the look in one of the paramedics’ eyes that their son was in trouble. He was brought to the local hospital and then quickly transferred to Madison, where he was taken to the OR. Doctors there found a small green tack wedged in his airway. It was small but it had wedged itself in perfectly, completely obstructing the boy’s air flow. Over the next two days, Caleb remained intubated, with machines breathing for him.
At first it seemed that he might get better; he had been kept in a medically induced coma, to let his brain recover from the lack of oxygen. The team told the extended family, who had been sitting vigil at his bedside, that they would try to wake him the next day. They told everyone to go home and get a good night’s sleep. After everyone else left, LeAnn went to the bathroom, and when she returned to Caleb’s bedside, the alarms on his monitors started going off. Caleb’s blood pressure and heart rate had shot up and then plummeted. She knew he was gone. That was the moment Caleb’s brain herniated.
The entire family was brought into a conference room that night and told that Caleb was brain dead. They were devastated. When they were asked if they would consider donating his organs for transplantation, Dan and LeAnn said yes immediately. They needed something positive to come out of their son’s death.
Ultimately, eight organs were transplanted from Caleb’s body into recipients who were waiting for the gift of life: his heart, both lungs, his liver (which was split between a baby and an adult), both kidneys, his pancreas, and his small bowel. So many lives were saved by this one boy who had died for no good reason on a day like any other.
Much time has passed since that horrible day in December. Dan and LeAnn are doing well, spending their time with their two other children, making memories they will cherish forever. Those memories will include stories about Caleb. They won’t think about the horrible times as much as the good, and maybe their memories will include stories about the recipients of Caleb’s organs. We hope his lungs are filling with air every couple of seconds, sending oxygen through someone’s young body. We hope Caleb’s heart is out there somewhere, still beating away, pumping blood around some boy or girl, giving him or her enough strength to run around a playground. Maybe someday LeAnn and Dan will get to listen to its rhythmic sound.
AND THEN THERE was Kylie, whose mother, Shirley, introduced herself to me in this way: “We are a family of five, my husband, Bruce, and I. And we have three children: Kylie, our oldest daughter, she passed away at age seventeen due to a fatal car accident; my son, Chase, he is nineteen; and our youngest daughter, Kensie, is now seventeen.” In Shirley’s mind, they were still a family of five.
The day Kylie left them, a day forever preserved in their memory, was a Sunday in summer, one of those July days when the warm, gentle wind blows just enough to make it comfortable; the type of day when the screen doors allow the breeze to move through the house, beckoning you outside. Normally, on a day like that, Shirley and her family would have been out on the river. But Shirley knew Kylie would be back home at around noon, after a weekend away at a wedding with her boyfriend and his family, and she wanted to hear all about it. Kylie had earlier asked her mom if she would go with her to look at some spots around town where she could have her senior pictures taken. Shirley couldn’t believe her older daughter was already making p
lans for college.
After church, Shirley did a little shopping, picking up some shorts Kylie had asked for. A little after noon, her son, Chase, came in and told her that a MedLink helicopter had just landed in a nearby field. He thought maybe there’d been a farm accident.
This didn’t sit right with Shirley. Kylie should have been home about now. She sent her a text, but heard nothing back. So, Shirley and Bruce made their way to the scene of the accident—where their greatest fears were realized: Kylie’s car was wrapped around a tree and surrounded by emergency workers.
The next few hours went by like a blur. Kylie was so unstable that she barely made it to the hospital. Shirley and Bruce sat in the waiting room, receiving periodic updates from the nurses, none of which brought any hope. Kylie wasn’t even stable enough to be brought to the CT scanner.
Kylie never made it out of the trauma room. She was declared brain dead. And before they knew what to think, Shirley and Bruce were asked about organ donation. The decision was easy. “Kylie had told me when she had gotten her license that she was going to be an organ donor, and we had talked about it at that time. ‘Mom,’ she said, ‘when the time comes, and I go, I don’t need my organs for anything. So why not give them to somebody? Why not try to save a life or two lives or three lives or how many lives you can save?’ So, she was actually the one that brought it up and that made me change it on my license to an organ donor.”
Kylie was moved to an ICU, where family and friends could stay close to her. She was extremely unstable, and the doctors and nurses were working hard to keep her heart beating. The wait for our procurement team to come up from Madison was interminable for Shirley and the rest of the family.
How Death Becomes Life Page 25
