Making the Decision and Being Evaluated for Transplant

Abstract

“What about a transplant?” asked Pauline DeLuca as she discussed her treatment options for sarcoidosis with her pulmonologist. He answered that at that time, transplantation was not an option for people like her. Some years later, when DeLuca was in her mid-forties, her health took a serious downturn so that the smallest exertion caused extreme shortness of breath, forcing her to quit her job. A stress test showed her heart was being damaged. The good news, however, was that by that point, surgeons had tried lung transplants on sarcoid patients and had success comparable to that for people suffering from some more common diseases. The efforts of the pioneering medical teams, United Network for Organ Sharing, and Congress meant that in the year 2000, her doctor could broach the possibility of a lung transplant with her. “Oh my God,” she reacted, noting that his words were a “wake up call that this is serious.” The news that she was sick enough for a transplant took a little time to sink in, but DeLuca maintained, “Once I got used to that idea, I was all for it.” She quickly concluded, “That’s it. Let’s do it.” Her husband and older daughter were more hesitant, she recalled, saying, “No, no, no, no, no, you don’t want to do that.” They tried to slow her down, insisting she needed to gather more facts before deciding. She replied, “Listen, I’m the one who’s living like this. I’m the one who’s willing to take the chance that I could be healthy again and have a quality of life—even if it’s only for three years or two years.

I’m confused about transplants. When’s the right time? What should I do? Whom should I listen to? Is it worth risking my life to live a different life? Or will that just be difficult in different ways?¹

—Laura Rothenberg