Alicia Foss dodged a bullet, some might say, when she survived childhood leukemia – though its legacy almost killed her two decades later: Chemotherapy that worked so well also created an environment in which pulmonary fibrosis (PF), an incurable lung disease, developed and grew unnoticed until she was a high school senior.
In the time that followed, including four fretful years on the national organ-transplant wait list, Foss’ death drew closer with every shallow breath.
Fortuitously she became a patient of UW Medicine physician Dr. Ganesh Raghu, a world-recognized PF expert.
From February 2006 until she received a double-lung transplant in April 2010, Foss’ health was maintained by UW Medical Center’s (UWMC) interstitial lung disease/pulmonary fibrosis team.
Their collective vigilance and experience likely slowed the disease’s progression and kept Foss and her transplant hopes alive during the wait.
“Alicia’s pulmonary fibrosis was bad. She had very limited life expectancy and no options other than lung transplant,” said Raghu, medical director of UWMC’s lung transplant program.
“In a person with longstanding fibrosis, their lung volume’s functional capacity keeps decreasing, their lungs and chest get smaller and the oxygen requirement goes up. They develop pulmonary hypertension, then fluid retention, and then they die. Medical management is very challenging.”
Every two to three months, Foss’ parents ferried her from rural Kennewick, Wash., to Seattle. Raghu reassessed her dwindling lungs and recalibrated medications to address changes in inflammation, fibrosis, oxidant-antioxidant balance and pulmonary hypertension.
Raghu likened his tailored care to navigating a wintertime, pre-dawn drive on an interstate: “You must always be alert because you know black ice is there though you cannot see it.”
To extend the analogy across his transplant candidates, Raghu pilots cars that need new engines. He can only estimate his fuel supply and the nearness of his destination. He must take the car as far as it can go, accelerating and break judiciously, taking curves at optimal angles and speeds, and anticipating perils that could doom the trip.
Foss was among the 25 percent of U.S. lung-transplant candidates who wait more than 36 months for donor organs. Few transplant candidates elude the stress that comes with waiting.
“We provide counseling to the patients and families, to give hope,” Raghu said. “When you cannot walk a few steps without shortness of breath and you require supplemental oxygen, you wonder whether a transplant will indeed happen.”
In 2007, Foss got the call saying that matching donor lungs had been located, but learned, upon reaching the hospital, that they were not healthy.
“It was tough,” she said. “Just hearing that you need a lung transplant is emotional 
in itself. There were ups and downs. The support from everybody is what kept me going.”
Emphysema, cystic fibrosis, any end-stage pulmonary disease including fibrosis, sarcoidosis, and hypertension are conditions that can warrant lung transplant.
A widespread team keeps these patients alive, Raghu said. Physicians, nurses, coordinators, pharmacists, respiratory and rehabilitation therapists, social workers and the surgical team led by Dr. Michael Mulligan – all contribute to lung-transplant patients’ survival rate, which at UWMC is superior to the rate nationwide.
Patients’ compliance and willingness to endure makes a difference, too, Raghu said.
“The patient and family are the main team players,” he said. “Motivation, encouragement when things are not well, holding hands – all of that matters.”
To learn more, call the Lung Transplantation clinic at 206.598.5668.