Only about 1 to 2 percent of deaths in the United States are brain deaths, the main criterion for organ donation. Donors typically have to die of a neurological injury. A patient is declared brain-dead, but a ventilator keeps the person’s heart beating and blood flowing. Every minute counts: Most organs have to be transplanted within 6 to 12 hours; kidneys can last longer. A single organ donor can save up to eight lives.
In rare instances, a person who sustains a non-survivable brain injury but doesn’t become brain-dead can still be a candidate for donation. In such cases, known as “donation after cardiac death,” the option of donation is offered after a patient’s family elects to have the ventilator withdrawn. Last year, 15 people in Washington who died of cardiac arrest became organ donors.
WRTC has a team of “recovery coordinators” who go into hospitals after a potential donor has died and speak with the family. When a patient has organs viable for transplant but didn’t registered as a donor, it’s up to the next of kin to decide whether to allow donation. Coordinators have had family members yell at them or ask them to leave.
“A family doesn’t come into the hospital expecting their loved one to be an organ donor,” says Johnson. “They usually come in with the expectation that their loved one is going to get better.”
Recovery coordinators stay until they’re sure a family understands the choices. They’ve heard from families who have said no, then regretted it. One of WRTC’s volunteers, NaTasha Driggers, had a kidney-and-pancreas transplant in 1998 after struggling with juvenile diabetes. When her uncle came to visit her at Inova Fairfax Hospital, he got off the elevator, then turned around and left. He couldn’t face his niece: When he’d lost his wife nine years earlier, he’d said no to donating her organs. “I believe he felt bad,” says Driggers, who lives in Clinton. “He didn’t understand until it hit close to home.”
Last year, about 72 percent of medically suitable deceased patients in Washington had their organs donated. That’s close to the federal goal of 75 percent.
Johnson says some families don’t feel comfortable saying yes because they don’t know whether their loved one would have wanted to donate.
As a surgeon, Johnson rarely talks with donor families. He’s not involved in a donor’s medical care until it’s time to recover organs.
“There are people that feel like, ‘If I’m an organ donor, hospitals won’t care for me like they would if I weren’t a donor—they’ll just want me for my organs,’ ” he says. “It’s a myth.”
Johnson can’t predict when he’ll have organs for his patients. “The frustration comes when we have patients who you know will do well with a transplant and you watch them decline so much that they wouldn’t be able to tolerate one.”
He used to be busier in the summer, when young people had more car accidents, but tougher seat-belt laws have changed that. Now he sees more older donors who have had strokes. He may go a month without an organ offer, then have one every day for a week.
Johnson logs onto the United Network for Organ Sharing (UNOS) Web site one afternoon and finds an organ offer in progress. Local organ-procurement organizations notify UNOS whenever there’s a donor. UNOS posts donor information online—cause of death, medical history, vital signs, labs—and notifies doctors whose patients might be a match.
As soon as Johnson pulls up the Web site, his nurse calls. She’s already been paged about the organ—a kidney from a 42-year-old man—and wants to know if Johnson’s interested. He has an hour to accept it or turn it down.
“The blood pressure’s a little high, but it’s come down,” he says. “I don’t see any obvious issues.”
Johnson’s patient is number 11 on the list of potential recipients, so ten people have to turn down this kidney before it would go to his patient.
“If it’s a good donor, I’m probably not going to get it,” he says.
When Johnson became a surgeon, most organs were allocated based on how long patients had been on the list. That was especially tough on people with liver disease. Many of Johnson’s transplant patients have cirrhosis—often caused by alcoholic liver disease or hepatitis C. Others have autoimmune disorders or early-stage liver cancer.
“If your doctor wasn’t savvy enough to get you on the list early and your disease was progressive, you would be behind somebody who had waited longer but was healthier than you were,” he says.
In 2000, the federal government changed the rules: Most organs would be allocated based on medical urgency. Patients get a score based on the Model for End-Stage Liver Disease. The higher your score, the better your chances of getting an organ.
Patients with acute liver failure get top priority. Acute liver failure—often caused by a medication overdose or a virus such as hepatitis—can come on so quickly that the patient seems healthy until the liver is days away from shutting down.
“We’ve had the ironic situation where people come in for a transplant, become brain-dead, and go from being a potential transplant recipient to a donor,” says Johnson. “The kidneys, heart, and lungs are okay, but the liver has failed and they’ve died of brain swelling.”
Kidney allocation is more complicated. Because people with kidney failure can live on dialysis, says Johnson, “it’s harder to clearly define who’s the sickest patient.” The current system considers how long someone has been waiting for a kidney along with other factors. There’s a controversial proposal out from UNOS that would make age a determining factor.
“They’re trying to match younger kidneys to younger recipients,” says Johnson. “Today there’s a 65-year-old lady who’s going to get a 17-year-old kidney—the way the list is now, she’s allocated that organ. The question is: Is that the best way to utilize a resource you don’t have enough of?”
Organs are typically allocated locally first; if there isn’t a match, an organ is allocated regionally. In rare cases, such as a perfectly matched kidney, an organ might be flown across the country.
Most of Johnson’s patients ask about their donor, but he can’t say much. Donor information is private unless a family wants to share it.
“Most patients are very appreciative of the gifts they get,” says Johnson. “Most realize how close to death they were.”
He’s had a few patients who didn’t seem grateful. He’d think: Don’t you get it? Somebody died so you can live.
Last summer, one of Johnson’s patients got a liver from a young man who’d flipped over while riding an all-terrain vehicle. Johnson came home that night and told his 12-year-old son, Brandon, that he never wanted him riding an ATV.
“Every transplant we do is tied to a tragic incident,” says Johnson. “It’s particularly hard when it’s young people.”
He used to have a hard time getting patients off his mind—he’d find himself replaying surgeries in his head. Now he doesn’t like to talk about medicine after work. He comes home to McLean and watches sports with his kids.