DURHAM — Until Allie Cayton’s lungs abruptly stopped working, she used them to the hilt. The vibrant, composed 16-year-old played clarinet in the East Carteret High School marching band and swam butterfly and freestyle races for the school’s swim team.
Until last spring. That’s when a mysterious illness, likely a virus, hit hard and fast, damaging her lungs beyond repair in a matter of days.
It struck on April Fool’s Day, the start of spring break. She was riding with friends from her home in Beaufort to a park in Wayne County where they dash around on their four-wheelers. But on the way, she became nauseated and began vomiting. Her friends called her mom, Donna. Allie was having trouble breathing, and her temperature was soaring, they said.
They took her to Wayne Memorial Hospital, where, looking back, her problems seemed simple. Neither Allie nor her mother could have imagined the months ahead, with Allie close to death, hooked up to a machine that breathed for her. Or that doctors at Duke would need to try something completely new in an attempt to save her, an experiment of sorts that now could give hope to other children with similar, sudden problems.
At the hospital in Goldsboro, her mother said later, the process was more basic. Doctors thought Allie might have developed bacterial pneumonia.
She seemed to get better and was released. But about 3 a.m., she woke up, again struggling for breath, and her mother drove her to their local hospital in Morehead City. Her blood samples, as they had in Goldsboro, showed no evidence of bacteria, but X-rays revealed a white shadow, low in her right lung.
Her mother hit a new level of fear. The doctors had tested for all kinds of things and were using serious doses of antibiotics. But whatever was causing the problem, nothing was slowing it down.
Close to death
By nightfall, Allie was struggling to breathe, even with pure oxygen being pumped into her lungs. She needed to get to a larger hospital, and fast. She was loaded onto a helicopter and rushed to Vidant Medical Center in Greenville.
More X-rays showed that the white shadows were advancing, taking over more of her lungs. The doctors there said they were running out of options. Too sick to fly, she was taken by ambulance to Duke Medical Center, her fourth hospital in five days.
For hours after reaching Durham, Allie was barely hanging on. Her mother started calling the rest of the family. Allie’s father, a civilian worker at the Navy’s repair depot for aircraft in Havelock, died of a liver disease when she was in sixth grade. But her brother, Brandon, 23, drove from Charlotte, where he’s in college.
That was just the first time that Allie came close to dying. There would be more.
By the next day, she was on a life support – a lung ventilator – and so swollen that she was unrecognizable.
The doctors at Duke were mystified about the cause of her illness. But they hoped that using a more advanced form of life support, ECMO (extracorporeal membrane oxygenation), would give her lungs enough rest for them to recuperate.
A machine would essentially act as her lungs, pulling blood out through a tube run through her neck down into a large blood vessel, scrubbing out carbon dioxide and adding oxygen, then pumping it back in.
Typically, patients with respiratory failure who are put on ECMO at Duke would have about an 80 to 90 percent chance of dying without it. Once on, their chances of dying drop to about 30 to 40 percent.
Allie was put into an induced coma so she could deal with having the machine breathe for her even while her lungs still wanted to pull in air, something that’s harder to cope with than it sounds.
Days dragged on. Her mother stayed by her bed in the pediatric intensive care unit and slept at Ronald McDonald House, and her brother and other relatives came, too, talking to her and watching as the team of doctors and nurses dealt with one problem after another, including collapsing veins and minor infections.
The expenses pile up
The costs for this extensive care were mounting. The Caytons had insurance, but there was a $10,000 catastrophic deductible, and the co-payments on two of Allie’s medicines hit $1,400 a month.
Donna Cayton said last week that Allie’s medical expenses, nearly all of them covered by insurance, totaled about $2.25 million. At one point, she saw a tally of about $800,000 for medicine alone.
While Allie was in her coma, the Caytons’ church, with help from the marching band, decided to hold a fundraiser, selling barbecue dinners. There were other donations, too, including some from strangers who read about Allie on a Facebook page her mom set up to keep friends and relatives up to date.
Donna Cayton, a retired bank worker, had been studying for a degree in medical administration at Carteret Community College in hopes of starting a new career. She was part of the way through the term, but she had no choice but to chalk up the semester as a loss.
Time to experiment
After a couple of weeks on the machines, Allie seemed to have stabilized. She wasn’t getting much worse. But she also wasn’t getting better.
After four weeks, it was obvious that her lungs would never work again.
Normally at that point, the doctors at Duke, like their counterparts at other hospitals with ECMO, would remind the family that the life-support technique doesn’t fix anything, it just buys time for a patient to recover. Since she wasn’t recovering, they would say, it was time to detach her from the machine. Meaning, essentially, she would die.
The team looking out for Allie had another idea. It was one last hope, a process that, as far as they knew, had never been tried for a pediatric patient who didn’t have a chronic lung illness. They used her time on the ECMO as a bridge to a double lung transplant.
In the vast majority of cases, ECMO is used for patients who remain in bed, giving them time to recuperate. But since 2009, Duke had put about a dozen patients on ECMO to get them walking before a lung transplant. Even that was cutting edge, and Allie’s case carried it further.
Unlike the others who went through “ambulatory ECMO,” she didn’t have a long-term disease. That might seem like a plus, but it actually was a major complication.
For years, Dr. Ira Cheifetz, medical director for Duke’s Pediatric Intensive Care Unit and the Neonatal-Pediatric ECMO Program, and other members of the pediatric intensive care and transplant team had been thinking about a case like hers: a young patient who had been healthy until the point of a sudden catastrophe with the patient’s lungs.
They believed there would be a major hurdle. Patients with long-term lung disease are accustomed to struggling for breath. But people with sudden illnesses such as Allie’s have trouble adjusting to an ECMO machine because they can’t stop feeling that they are suffocating.
Yet Allie would have to be brought out of heavy sedation to walk. She had to prove that she would be able to use a valuable set of new lungs or she wouldn’t be approved for the transplant.
Allie was now in a race for her life. And she was still in a coma.
‘Walk to the door’
Donna Cayton knew all this. But for her, finally having a plan was a huge turning point. After weeks in which her daughter had hovered near death with no answers, the dangers of a major transplant seemed almost minor.
The doctors and nurses started to wean Allie off the drugs that kept her in the coma, the first step to getting her walking before her muscles became too weak. It was a small window, though no one knew how small.
It took 10 days, as they talked and counseled and slowly reduced the medicine that was keeping her from panicking because of the feeling that she couldn’t breathe. She struggled with withdrawal from the drugs and against the panic that caused her heart to race uncontrollably.
The team and her family stayed focused on persuading her to stay calm so that the medicines could be dialed back.
“You can do all the medical stuff in the world, all the high-tech things with all the life-saving equipment, but that came down to basic TLC,” Cheifetz said. “That came down to everybody, the nurses, her therapists, the doctor, her family, holding her hand, talking with her, reassuring her, gradually readjusting her medications down.”
Allie was really annoyed at being told to do something so hard – get up and walk. It wasn’t just that her lungs didn’t work. After so many weeks in bed, her muscles had atrophied and her left leg almost didn’t have enough muscle left to function. A physical therapist had to fit her with a brace for her first attempts.
At first, she could manage only a few steps. But everyone – doctors, nurses, therapists, her family – kept up the encouragement.
“Go, go, you need to do it, you have to do it,” they would say. “You’ve got to walk to the door, walk to the door.”
They pushed her farther and farther. On the third day, she slowly, painfully shuffled 58 feet.
That was enough. She had proved she could walk, not just totter a few steps. She was a month past the normal point of unhooking a patient from the ECMO machinery.
Getting new lungs
About 6 that evening, Donna Cayton got a call in her room at the Ronald McDonald House. Allie had been approved for the lung transplant list.
That was the Friday of Memorial Day weekend. Two nights later, her phone rang again. A set of lungs was available. It was 1 a.m., and a transplant doctor was making sure the lungs had a good chance of working for her.
At 4 a.m., Cayton’s phone rang again. Come to the hospital, she was told. Allie’s getting the transplant.
“She had done all the hard work,” Cayton said. “She had got up and walked, and for me it was clear that she had the determination, and as long as the operation went well, I thought everything would be OK.”
The transplant surgeon, Dr. Shu Lin, went to work. For hours, Donna Cayton sat in a small waiting room that was otherwise empty. It was Memorial Day.
After nearly two months at Duke, the Caytons were like family; members of the ICU staff repeatedly checked on her. She remembers even the women cleaning the hospital asked if there was anything they could do. By late afternoon, a relative joined her to keep vigil.
The complex surgery took 10 hours, but everything went perfectly.
Two days later, her medical team had Allie up walking again. There was pain, but much of it new kinds of pain, a reminder that things had changed for the better. Someone else’s lungs were now hers. And they were working.
On Aug. 17, after two months of rehab, Allie finally was able to go home. School started a week later. She goes only two hours a day to keep down her lungs’ exposure to germs. She takes most of her classes via video, but she expects to be back to school full time next fall.
This past week, she came back to Durham for a battery of complicated tests. She’s not weak any more. And she has probably never been timid. She led her mom around, striding quickly from department to department, easily navigating the sometimes-confusing medical center. At each reception desk, she’d march up and announce herself.
She knew many of the nurses and doctors, and almost always was the one to initiate the small talk. Even the busiest doctors wanted to chat.
None of it, not giving enough blood for 13 blood samples, or the tubes with instruments slipped down into her airway to take tiny snips of her lungs for testing, worried the lively teenager.
“I’m just so used to it all, I just go with the flow,” she said, shrugging.
Before she got sick, Allie had been thinking about a career in health care. Now she’s sure. She wants to be a pediatric physical therapist.
“Once I worked with them, I realized how great they were,” she said. “I loved all my physical therapists, and Lord knows, I gave them trouble.”
For now, Allie doesn’t know who her lungs came from, and she hasn’t decided whether she will ask. If she does, the hospital will check with the donor’s family to see whether they want to reveal any information.
This visit marked the point where the team looking after Allie turns loose a little. She isn’t expected to be back for more tests for two or three months.
The doctors, meanwhile, have written her story for a medical journal. What worked for her could save more children.
“If she had not walked, I can tell you with a great deal of certainly she would not have been a lung transplant candidate, and she would not have survived,” Cheifetz said. “As much as people in the medical world talk about miracles, I have to say it: She’s a miracle.”
Now, she’s not just alive, but she’s eager to get back to swimming and everything else she could do before.
She’s still on a hefty regimen of drugs, including steroids to reduce any chance that her body will reject the lungs. And the bills for co-payments are still rolling in, though so far, her mom has been able to pay for them out of the $25,000 they got from the fundraiser and donations.
Allie’s weight is up a little – much, she thinks, from the steroids – and her neck is pocked with scars from the holes where the various tubes ran air and blood in and out of her body to keep her alive. But she can lose the weight, and plastic surgery can help with the scars later.
And instead of being an appearance-focused teen, she wants to turn what happened into something positive.
At physical therapy, whenever she meets someone who’s preparing for a lung transplant, she goes down the list, telling them in her matter-of-fact tone what to expect at each step, easing their fears. And she and her mother appear at fundraisers for Ronald McDonald House to help pay them back for all her mother’s stays in Durham.
The most recent was at the Ronald McDonald House in Raleigh on Oct. 19. It was Allie’s birthday, and the staff brought out a cake dotted with burning candles and set it in front of her.
Allie took a deep breath and leaned forward. It took two puffs with those new lungs, but she blew out all 17.