The Other Side of the Stethoscope
medicine fellowship program at the National Institutes of Health (NIH), and as medical director for the Greater Chesapeake and Potomac Blood Region of the American Red Cross (ARC). With a keen interest in the hepatitis C virus (HCV), Conry-Cantilena was involved in clinical research at the NIH. And at the ARC, her job involved maintaining an adequate blood supply for the D.C. metro area. She loved her time with her kids, too. Being Super Mom was all in a day's work.
Over the years, Conry-Cantilena had noticed occasional shortness of breath, but her physicians always found a reason related to one pregnancy or another to explain her labored breathing and fatigue. Still, she worried.
In 2000, a routine chest x-ray led to something she didn't want to hear. She was diagnosed with lymphangioleiomyomatosis (LAM), a rare, progressive, cystic lung disease with no cure. LAM predominantly affects women of childbearing age. It may be underdiagnosed; experts estimate that there could be as many as 300,000 cases worldwide.
After the diagnosis, Conry-Cantilena spent five years denying the severity of her condition, even as it slowly worsened. Some days, she'd just wish for it to go away. "I didn't want LAM to define me," she recalls.
Unfortunately, she was unable to hide her fragility and deterioration from either patients or her family. By 2005, she was oxygen-dependent and started looking around for transplant options.
"I would put my oxygen tanks on my back to go to work," she says. "I'm sure [my patients] felt sorry for me, and I hated that. It wasn't something I wanted to dwell upon."
During a family visit to New York, her mother took one look at her and asked, "What is wrong with you?" A few months
In March 2006, Conry-Cantilena underwent a double-lung transplant, and today people tell her she looks great. "People complain about life not being perfect," she says. "My life was perfect. Even now, I still believe life is perfect."
later, in March 2006, Conry-Cantilena underwent a successful double-lung transplant, and today people tell her she looks great.
"People complain about life not being perfect," she says. "My life was perfect. Even now, I still believe life is perfect."
When she began researching transplant options with the United Network for Organ Sharing (UNOS), she identified Duke University Medical Center as having extensive experience with double-lung transplants. Shortly after New Year's Day in 2006, she entered the Duke program to prepare for the complex surgery. Her husband and their two youngest children
relocated to North Carolina to be with her through the rigorous preparation, surgery, and postop period.
A few weeks into the program, Conry-Cantilena came down with a respiratory infection. Her already marginal condition worsened, and on March 5, she actually "coded"—went into respiratory arrest—for six to eight minutes. Her husband, who was constantly at her bedside in the ICU, was aware of potential complications unique to LAM and offered the Duke team a quick education in the disease. His suggestions led to her successful resuscitation, she says.
"After the code, still on a ventilator, no one was sure I had much, if any, neural function," she says now. Shooting to the top of the transplant list, Conry-Cantilena remained intubated until a new set of lungs was found, four days later. The day after the surgery, she was able to sit in a chair and breathe just room air.
The picture she has of herself before the transplant, and the dramatic improvement she saw afterward, is "what throttles me each day," she says. "It is a constant reminder of the importance of compassion. What a gift this journey has been to me!"
Conry-Cantilena now appreciates life more than ever. She loves reading to her youngest daughter, looks forward to family dinners, loves holidays when all the kids are home. "I look at the sky, and it's still blue. You can't imagine! It's a gift. I used to have to think about every breath I took."
Today, she goes to work with a different mindset but still manages to put in time each week at her two jobs. Her commitment has shifted from trying to maintain the region's blood supply to being a poster child for blood and organ donation.
"I want to shake every donor's hand and thank them for what they do," she says. Her personal experience has taken her