Another shot at life

On the morning of Oct. 29, 2007, Barbara Greenberg received the most terrifying phone call of her life. She had been both anticipating and dreading this moment for more than a year. Just hours later she found herself at the University of Washington Medical Center (UWMC) preparing to receive a double-lung transplant. "My three-year anniversary is coming up," Greenberg said with a smile, thankful for a procedure that she said saved her life. The UW senior was born with one of the most common fatal genetic diseases in the United States today: cystic fibrosis (CF). The disease causes a thick and sticky mucus buildup in the lungs, blocking the airways and causing an increased mucus buildup that can lead to bacterial growth, inflammation, and serious, incurable lung infections. Greenberg spent her first semester of college at the University of Iowa, but as her health worsened she had to make a very difficult decision. "What people have to realize, which not all patients do, is that getting a double transplant is a last resort," Greenberg explained. "When you're to the point where something is the last resort it might not work out ... but I knew I wanted to do it. I didn't want to just die, which was what would happen if I didn't get the transplant." Because the University of Iowa didn't have the capacity to perform transplants, Greenberg and her family relocated to the UW. The UWMC lung transplant program is recognized as one of the best in the country, with a 92 percent survival rate that significantly exceeds the national average. "Barbara moved here and was referred for transplant and had to go through the work up," said Angela Wagner, a social worker for UWMC's lung-transplantation program. "The work-up process can take [anywhere from] a week, up to a year." Once at the UW, Greenberg's case was assessed by a core medical team that included thoracic surgeon Micheal Mulligan, a transplant pulmonologist, nurse coordinators, a social worker, a financial counselor, a rehabilitation medicine doctor, a physical therapist, a pharmacist, a nutritionist and a respiratory therapist. All members of the medical team must agree that a transplant is the right option for the surgery to proceed. Afterward a patient's name gets placed on the wait list where it will remain indefinitely. "We tell people it's four to six months average wait time," Wagner said. But the wait time is only an estimate, and Wagner urges patients not to become set on these numbers. "I think people tend to feel like they can't go out and live their lives because they're on this list and waiting for the call," Wagner explained. "Their worlds become really, really small." The waiting, Wagner claims, is the hardest part. In Greenberg's case, it took slightly more than a year. "Once you're on the transplant list you must be able to relocate at any time," Mulligan explained. "If you miss an opportunity, it could mean your life." When an organ match is found, patients have only a matter of hours before they must be at the medical center preparing for surgery. For this reason, many patients, like Greenberg, choose to move to the Seattle area. Others make extensive emergency travel plans. Greenberg was put on the transplant list on Sept. 11, 2006. She said while waiting, she tried to live life as normally as possible, pursuing a major in disability studies at the UW. But the unpredictability of that phone call haunted her. Everyday activities became a struggle as she began to build a resistance to the IV antibiotics she had been given to fight the bacteria in her lungs. "Before my transplant I might get through one class and then [go] home, lay down, put on my oxygen mask and sleep for maybe 12 hours. It was so hard." Greenberg recalled. "The major impact [of this surgery] is being able to do the things everyone else my age is doing ... being able to go to school and really take advantage of being in college. When you're really sick it's so difficult to do that." Midway through fall quarter, Greenberg's lung function was at just 18 percent. She described walking to class as an almost impossible task. She was forced to drop or get hardship withdrawals from many of her courses. At around 7 a.m. on Oct. 29, a nurse coordinator called Greenberg into the UWMC, informing her that they had found a possible match. What happened next Mulligan referred to as "a race against time." The organs must be transplanted quickly as they are only good for four to eight hours. "Not many people get to do a job like this," Mulligan said. He compares his work to standing on the Grand Canyon: "[It's] wild and humbling." "I think I take it more personally than others do," he said. "You're actually working on someone's existence." Greenberg described the actual five hours she spent in surgery as "extensive," explaining that they broke her sternum for easier access. "Right afterwards I thought to myself, 'Why did I do this? I shouldn't have done this,'" Greenberg recalled. "You're in a lot of pain at that point but you just need to power through." During the one-year recovery process, a transplant patient risks rejecting their new organ, said Mulligan, which could cause it to fail within several weeks. It took about seven months for Greenberg to feel "like herself again." Though she has developed kidney disease because of her anti-rejection medication and must cope with CF-related diabetes, her now-80 percent lung function has completely turned her life around. "The main important thing is that my lungs are finally okay, and I can do the stuff I have always wanted to do," Greenberg said. With the reassurance of her family and medical support team, Greenberg returned to school two quarters later. She hopes to graduate this spring. "Being born with CF - in general - has made me a different person than I would be otherwise," Greenberg said. "I really want to help people. I don't know if I would feel like that if I'd never had to go through all of this myself. I think it matures you a lot ... having to go through all these really difficult things when you're not sure if you're going to come out on the good end or bad end of things." Reach reporter Becka Gross at lifestyles@dailyuw.com.

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