A young woman in need of a double lung transplant says she’s been betrayed by Duke University Medical Center after doctors had her move near the college to prepare her for a transplant, only to tell her “out of the blue” last week she won’t be getting new organs and she should go back home.
Lauren Averitt feels betrayed by Duke University Medical Center
“I went numb I was so shocked, I couldn’t believe it,” 28-year-old Lauren Averitt told WorldNetDaily.
The South Carolinian who suffers from cystic fibrosis, a disease with no cure, says she relocated to Durham, N.C., at the demand of Duke officials who wanted her in close proximity to activate her – that is to say, put her on call – for new lungs.
Averitt, who’s been on the waiting list since May of last year, also complied with a host of other requests from her doctors and transplant coordinator – including raising tens of thousands of dollars in cash, securing medical insurance and undergoing physical rehabilitation at Duke in advance of surgery. She was even recently instructed by the university to get a pager for quick notification once organs became available.
Dr. Mark Steele
But during a routine appointment last Tuesday, Lauren was suddenly informed she would not be getting new lungs. She says Duke pulmonologist Dr. Mark Steele announced he didn’t think she’d make it through surgery, citing a 40 percent rate of survival.
“It’s unbelievable!” exclaims Averitt, who told Steele she would take the 40 percent chance of survival compared to zero chance by not having the transplant. “How are you going to tell me you’re not going to give me new lungs? I did everything you told me to do.”
Lauren says she even received letters from Duke – one postmarked two days after the shocking news – still scheduling her for an appointment Sept. 15 with a thoracic surgeon, with no indication of any potential obstacle.
Lauren’s aunt, Alice Averitt, was present when Steele said his decision was “non-negotiable,” and says she, too, was so shocked, she couldn’t utter much at the time.
“It broadsided us, we were not prepared,” said Alice. “[Lauren's] just devastated, like her world has been ripped apart.”
Alice, a drug prevention specialist at Newton-Conover High School in Newton, N.C., says teachers and students who helped raise money for Lauren are outraged, with some looking to go to television stations in the Raleigh-Durham area to publicize the case.
“Now we’re angry,” Alice said. “I personally worry Lauren’s time will run out.”
“Our one- and two-year survival rate is 85 percent, and our five-year survival rate is 50 percent,” she told the Simpsonville Tribune-Times in South Carolina. “We don’t really have it calculated further out than that.”
Richard Puff, associate director of the medical center’s news office, did provide WND with a written explanation regarding B. cepacia, referring to why Lauren was suddenly yanked:
Recent evidence has indicated that patients with a particular strain of this bacterium, called genovariant 3, have extremely poor outcomes following lung transplant. Specifically, cystic fibrosis patients with this form of the illness have a 40 percent chance of surviving for one year after transplant (compared to approximately 90 percent for the average cystic fibrosis patient).
Although patients with genovariant 3 generally do survive surgery and are later discharged from the hospital, they are frequently readmitted and die as a result of infection related to the B. cepacia. Because of these concerns, Duke has stopped doing transplants for patients with genovariant 3 B. cepacia.
Although our experience has demonstrated a reduced survival compared with other populations with advanced lung disease, our improved results, particularly with a redesigned post-transplant medication protocol, suggest that long-term survival is possible. Furthermore, we have found that if a patient with B. cepacia survives beyond 3 [months], results of transplantation are reasonably acceptable. It therefore behooves health-care professionals to continue to study this organism and develop new ways to prevent infection or techniques to allow the host to survive after lung transplantation despite B. cepacia.
“It’s up to the transplant center to make that decision,” said UNOS spokeswoman Annie Moore. “It depends on the condition of the patient and the surgeon’s judgment.”
Last year, 1,770 lung patients were taken off the list, most of which were for positive reasons as 1,039 patients received a transplant. Fifty-six were removed because they were too sick to transplant.
While the mortality rate is high for those undergoing the surgery, recipients in successful operations can live rewarding lives afterward.
One example is Stephen Brunell, 35, of Plattsburgh, N.Y., who went from inhaling oxygen as an assistant restaurant manager to becoming a firefighter once he had healthy organs.
“I feel great to be part of the community, to feel more like a human being,” he told the Press-Republican in June. “This is so much better than sitting on the couch hooked up to an oxygen tank watching TV all day. Four years ago, I was hooked up to four liters of oxygen. Now I’m running into burning buildings with a breathing pack, helping other people in need. It’s where I wanted to be.”
Lauren Averitt, meanwhile, feels like she’s been double-crossed and is scrambling to contact any facility that might take her.
“I’m lost. I don’t know where to go from here,” she said. “There was no alternate plan. There’s only one way to go home – with new lungs. You either die here or you go home with new lungs.”
As WorldNetDaily previously reported, the case prompted a national outcry of “U.S. citizens first” when it was revealed Santillan had been smuggled across the border and placed ahead of Americans on the transplant list.