In the hospital, they called her Sleeping Beauty. For two weeks, Alexandra Barnes, a 26-year-old fashion and film artist, lay hooked up to a ventilator in New York.
Pulled unconscious from an ocean swim, she appeared to sleep peacefully, her heart beating and her color pink. Days later, after tests revealed her brain had stopped functioning, her family made the wrenching decision to pull her from life support. On her final trip to the operating room, nurses and doctors lined the hallway, many in tears, bidding her farewell.
When she died Sept. 13, Alexandra’s gift of life as an organ donor began. Her kidneys went separately to two men in their 30s, both in New York City. Her corneas were given to a local eye bank. Her ovaries, pancreas, intestine, spleen and left lung were recovered for research.
And, in a remarkable cross-country race against time, her liver came to California. As part of her family’s wishes, it was transplanted in a down-to-the-wire surgery to replace the cancer-and-cirrhosis-damaged liver of Bill Lorber, a retired electrician in Loomis.
It wasn’t a random choice: Bill is the longtime partner of Belinda Paris, Alexandra’s aunt and godmother, who had spent nearly two weeks at her niece’s bedside.
By following Alexandra’s wishes to donate her organs and tissue, her family eased the enormous nationwide need for lifesaving transplants. The problem is especially acute in California, where more than 23,000 people sit on transplant lists, waiting for a kidney, liver, lung, heart or other essential organs. They face the longest average wait time in the country, according to Donate Life California, the state’s official registry.
For patients and physicians alike, the delays can be agonizing. Those on waiting lists can go months, if not years, before getting the call that Bill did. In some cases, that call comes too late.
Nearly three months later, Belinda reflected on the emotional roller coaster. “I saw my sister have her only child slip away,” she said, tears welling up. “But I also saw her only happiness come in knowing that other people have life because Alexandra was an organ donor.”
Friends and family describe Alexandra as smart, funny, tenacious, outspoken. At 5-feet-10 with green eyes and platinum hair, she also was striking. “She had swagger,” said her mother, Judy Armijo, a small-business consultant in Denver.
Alexandra grew up in Denver and moved to New York City in 2011, building a résumé with acting credits in small theaters and independent films. At the time of her death, a short movie she had produced, “All Ye Faithful,” was about to premiere. She and a Brooklyn friend, Alex Baird, had launched a fashion styling blog and business, Alexandrogynous, a play on their names. On the day she was stricken, she and Baird were lauded on a New York fashion blog under the headline, “Meet Brooklyn’s Coolest Style Duo.”
Getting there was not without struggle. She battled depression in her teens and in high school was diagnosed as bipolar. Graduating early, Alexandra briefly attended the University of Denver before she found her passion at the Colorado Film School. She worked out a budget down to the penny, her mother said, and cobbled together several jobs so she could pursue her dream: acting and working in film production in New York.
Raised as an only child (Alexandra’s parents divorced when she was 8, and there was little contact with her father), she and her mother shared a close bond. Under her arm, Alexandra had a tattoo that read “Lupita,” her mother’s nickname after a cloth doll they made together. Every six weeks, Judy would fly to New York so they could spend time together. They always got a manicure-pedicure, visited museums, ate at trendy restaurants, went for long walks. “She told me I was her best friend; but for me, she was my heart,” said her mother.
On their last visit in late August, for Judy’s birthday, they broke from their usual routine. Judy had misbooked her flight home to Colorado and had a couple extra days to spend. Alexandra suggested they head to the beach. “Beach? In New York?” Judy asked. It was Long Island’s Far Rockaway, a favorite spot of Alexandra’s. They took the A train to its last stop.
When they got off the subway, Alexandra had a headache so they stopped for Tylenol. “I don’t have a good feeling about today,” Judy recalled her daughter saying. Once at the beach, they both plunged into the ocean, but it was too chilly for Judy, who retreated to the sand to spread their towels. Alexandra, a lifelong swimmer, waved to her mom from the water. Some time later, Judy looked up and couldn’t see her daughter. Within minutes, lifeguards were carrying Alexandra’s limp body onto shore.
By the time Judy raced down to meet them, they had started CPR and chest compressions. Still in swimsuits, she and her mother were rushed by ambulance to the nearest emergency room, at St. John’s Episcopal Hospital. In less than 24 hours, Belinda flew from Sacramento to join her sister.
Two weeks in limbo
At the hospital, doctors initially held out hope that Alexandra might recover. Her mother slept beside her, holding her hand at night. Every four hours, nurses would bathe Alexandra, rub baby lotion into her skin and wash and comb her hair. Her stuffed bunny, Curly, a childhood companion, was tucked in her arms. A steady stream of friends, family and hospital staffers filled the room.
One of the first to arrive was Alex Friend, 29, a childhood buddy who grew up in Sacramento and now lives in New York. On road trips with her family, he and Alexandra would bicker and banter like siblings, he recalled, a relationship that was rekindled when he landed an accounting job last year in Manhattan.
“We had each other’s back. We confided in each other, things we wouldn’t share with friends or family,” he said.
On his Facebook page, after Alexandra’s death, he wrote that she “was destined to bring the world something great. Personally, what I am sad about the most is not being able to see what she would bring to the world next.”
On Sept. 11, while New York was commemorating the attacks on the twin towers, doctors declared Alexandra brain dead. That night, around 8 p.m., Judy and Belinda walked several miles to gaze at the 9/11 memorial lights rising from downtown Manhattan. It was the first time the sisters had stepped beyond the hospital grounds in nearly two weeks. After weeks of uncertainty and anguish, Belinda recalled, “We knew that Alexandra was free.”
122,682 Number of Americans needing a lifesaving organ transplant, as of Nov. 25
Within a day, while Alexandra was still on life support, doctors started recovering her essential organs, eyes and tissue. Mourning her niece, Belinda left her sister at the hospital and flew alone back to Sacramento. In less than 24 hours, she and Bill were on their way to San Francisco’s California Pacific Medical Center to await the arrival of Alexandra’s liver.
Although the couple had spent months getting ready for just this moment, Belinda, a registered nurse, was afraid.
Would the liver arrive intact and on time? Would his body reject it? Would he die in surgery? She remembered thinking, “I don’t think I can face losing two people I love in 24 hours.”
As the couple sat in a waiting area outside the operating room, Belinda clutched a framed 11-by-14 portrait of Alexandra, taken by a New York fashion photographer. Nearby, nurses and medical staff were on standby, waiting for the cross-country plane transporting Bill’s liver. They heard the commercial jet had been delayed leaving New York’s JFK Airport, then had trouble landing at SFO.
The timing was critical, said Dr. Raphael Merriman, the medical director of California Pacific’s liver transplantation center, who oversaw Bill’s care. Ideally, a delicate organ like a liver has a 12-hour window in which it’s considered optimal for transplantation. That deadline was fast approaching.
Suddenly, there was a shout: “It’s here! Let’s go.” Minutes later, a hospital cart with an insulated blue box marked “Liver” trundled past. “Alexandra was present,” Belinda said. “I felt like she had arrived.”
From the moment that Alexandra’s liver was clamped off in New York to when it was re-attached in Bill’s body, the elapsed time was about 11 hours, 50 minutes. The surgical team beat the deadline with 10 minutes to spare.
About 5 1/2 hours later, Bill was wheeled out of surgery. That Friday, he walked out of the hospital with Alexandra’s healthy liver filtering his blood. For the next 30 days, he and Belinda stayed in an apartment near the hospital while he went to regular post-surgery checkups.
Throughout Bill’s monthlong stay in San Francisco, Alexandra’s framed photo was at his side.
“In your life, you never think you’re going to see a miracle,” said Belinda, a former employee health nurse at The Sacramento Bee. “And then you see four or five miracles in a matter of days. It’s overwhelming.”
Of the 1,000 liver transplants Dr. Merriman has overseen, this was the first successful case of a “directed donation,” where the recipient is designated by the donor’s family. In any transplant, many factors have to work seamlessly. The donor liver needs to be of a compatible blood type, the right size and healthy enough to be transplanted.
The 2,500-mile journey from New York to San Francisco took the process to another level of complexity, requiring the liver, packed in a preservation solution and stored on ice, to endure the risks of flight delays and traffic congestion.
“For an organ that was transported across the country after a very tragic event, it functioned remarkably well,” Dr. Merriman said. So well, he added, that Bill was able to leave the hospital within five days, which is uncommon.
“Perhaps you can get philosophical that from this heartbreaking event, in spite of the logistical challenges, it was meant to be,” he said. “I think it’s important for the donor’s family to realize that.”
‘Light in a dark room’
The father of two grown daughters, Bill feels a bittersweet gratitude that Alexandra’s liver is keeping him alive.
“I’m just the lucky recipient,” he said, patting his right side. “But I’d give this liver back in a heartbeat, if it would bring Alexandra back.”
Bill, who retired in 2011 after 34 years as a Sacramento Bee electrician, lived with a compromised liver for decades. Now 67, he believes he contracted hepatitis C around 1969 while in the U.S. Army, possibly when he and other soldiers were lined up for mass inoculations with an injection “gun” that drew blood from multiple punctures. Decades later, he developed cirrhosis of the liver and, in early 2014, was diagnosed with liver cancer. Without a liver transplant, doctors told him, he would not have long to live.
In May 2014, after three days of evaluation in San Francisco, he was placed on the transplant waiting list. To become eligible, he and Belinda spent three days meeting with a cadre of specialists, including a psychiatrist, cardiologist, social worker, financial adviser and nutritionist. He went through a battery of medical tests: CAT scan, bone scan, X-rays and multiple blood tests. He had to sign a contract saying he would not drink alcohol, smoke or take illegal drugs, both before and after the transplant. Bill also was informed that he would need to take anti-rejection drugs for life.
“This is an incredibly precious organ that we bring to the table from a donor family, so there’s a higher standard of patient compliance. We never lose sight of that,” Dr. Merriman said. “It’s a commitment for life.”
At the time of Alexandra’s accident, Bill had been waiting about 16 months for a liver. Due to his progressing cancer, he was automatically moving up the list every three months. But if a potential donor was not available by the end of the year, his cancer could have grown to the point where a liver transplant was no longer possible.
“The clock was ticking,” the doctor said.
Across the country, organ donations are managed by a network of 58 organ procurement centers in 11 different regions, overseen by the federally designated United Network for Organ Sharing. When someone dies in a hospital, staff are required to contact a local procurement center, which helps determine if the organs and tissue are suitable. If so, an organ recovery team meets with family to discuss the possibility of donation.
22 Average number of U.S. patients who die each day waiting for a transplant
Though California’s wait list remains lengthy, donations in hospitals statewide have increased 12 percent in the first six months of this year, compared with the average of the past three years, according to Donate Life California, the state’s organ and tissue registry. Sierra Donor Services, which serves Northern California and Nevada, reported a 14 percent increase.
Deciding to donate a loved one’s organs is like “a light in a dark room,” said Julia Rivera, spokeswoman for LiveOnNY, which handled Alexandra’s organ recovery and now provides grief therapy to her mother.
“When someone dies, there is often no other option for a family to see good happen from a terrible disaster or unexpected death,” Rivera said.
Judy and Belinda knew exactly what Alexandra wanted because they had joked and talked about their end-of-life wishes after a family funeral in 2014. Alexandra wanted to be cremated and her ashes spread in Seville, Spain, and she wanted the Beatles’ “Here Comes the Sun” played at her funeral. Judy also knew that Alexandra had signed up to be an organ donor at 16, when she got her driver’s license.
Judy is still waiting to learn exactly what caused Alexandra’s death. There was little water in Alexandra’s lungs, her mother said, so medical examiners are conducting tests to determine if she suffered some type of cardiac arrest. It could be several more months before a conclusive determination is made.
In absorbing their loss, her family’s focus now is on how Alexandra lives on, through her gift of life to others. Even a veteran transplant physician like Dr. Merriman is humbled by what occurred. “For a patient with a life-threatening illness to leave the hospital cured ... that’s kind of hard to beat. I’ve done this for 16 or 17 years and it’s still remarkable, every time.”
Especially this holiday season, Judy’s wish is that families discuss and share their wishes about organ donation.
“It gave me strength knowing what Alexandra wanted. She gave up her life; all I’m doing is following her wishes. She’s the brave one.”
How to become an organ donor
In California: Anyone can register as an organ or tissue donor when applying for or renewing a driver’s license or ID card. Donors also can sign up online at the Donate Life California registry, at donateLIFEcalifornia.org. Students ages 13 to 17 can register online, but their parents make the final decision about organ donations.
Nationwide: Donors can sign up when getting their driver’s license or online at the United Network for Organ Sharing, which has a state-by-state registry at unos.org
Source: United Network for Organ Sharing