Days after Potomac resident Cathy Cantilena was featured in an Almanac story about her critical need for a double lung transplant, she had a respiratory failure.
Doctors decided to intubate and Cantilena apparently went into shock. Her heart stopped.
"She was out for over six minutes. They gave her last rites," said Kimberly Kempa, a family friend. But Cantilena survived and "two days later they found a set of lungs for her."
Since the transplant, Cantilena has not needed to use an oxygen tank, which she needed constantly before the surgery.
"She couldn’t live without it. Every time we went somewhere we’d always have two or three backup tanks," said Lou Cantilena, Cathy Cantilena's husband. "The difference is night and day. I can’t tell you what it's like to be able to take her for a walk around the hospital."
Cathy Cantilena now walks a total of one mile each day in the post-operative ward of her hospital. Before her surgery, "she couldn't even cross a room," Kempa said.
Cantilena has the rare lung disease Lymphangioleiomyomatosis, known as LAM, which affects fewer than 1,000 people in the United States, almost exclusively women.
The disease is not a type of cancer but like cancer is characterized by the uncontrolled growth of harmful cells. The cells eventually block airways and make breathing impossible.
Successful transplant recipients can return to their pre-illness activity levels and generally do not have recurrences of LAM symptoms.
"She should be able to go back to 100 percent normal activity," said Lou Cantilena, noting that he and his wife recently met a double transplant recipient at the hospital who was returning for her three-year post-operative checkup.
"She looked great," Lou Cantilena said.
Cantilena spent months preparing for the surgery at Duke University Medical Center, a leader in lung transplants.
She joined the active recipient list Feb. 24 and was twice rushed in for a possible transplant only to learn that doctors had decided the donor lungs were not a good enough match. The third time she was called, she received the transplant. The surgery often takes 10 hours and in Cantilena's case took only four.
Her new lungs are supplying her bloodstream with the oxygen at the rate of a healthy adult. Lou Cantilena called them "beautiful."
Kempa and other family friends have led a campaign to raise money to defray the Cantilena family's medical expenses and living expenses in North Carolina.
The fund has collected more than $25,000, including $4,000 at a "family fun night" held at the Barnesville School, where Cantilena's daughter Anna is a student.
Kempa said that the money has come not only from Potomac neighbors and friends at the Cantilenas' church and schools, but also from community members not tied to the family and from strangers.
The Almanac received e-mails from readers as far away as London expressing support for Cantilena.
Cantilena still has a difficult path ahead. She is taking drugs that suppress her immune system, making her extremely vulnerable to infections. She moved this week from the hospital to a sterile apartment; it has no carpet and almost no furniture to minimize dust and mold.
But, "as of today, there’s been no setbacks," Kempa said. "It’s really been pretty much a miracle."
ABOUT LAM
The following is excerpted from the Canadian Lung Association’s Web site at www.lung.ca/diseases/lymphan.html. Learn more there and through the LAM Association, on-line at http://lam.uc.edu:
Lymphangioleiomyomatosis (LAM) is a rare lung disease characterized by an unusual type of muscle cell that invades the tissue of the lungs. Over time, these muscle cells form into bundles and grow into the walls of the airways, and blood and lymph vessels, causing them to become obstructed.
Although these cells are not considered cancerous, they act somewhat like cancer cells in that they grow uncontrollably throughout the lung. Over time, the muscle cells block the flow of air, blood, and lymph to and from the lungs, preventing the lungs from providing oxygen to the rest of the body.
LAM affects almost exclusively women of childbearing age. The cause of LAM is not known, though recent research links it to gene mutations connected to tuberous sclerosis, an inherited disease.