With death literally staring her in the face at age 25, Carrie Shellhammer wasn't sure she wanted the lung transplant that her doctors said might restore her health.
"I didn't want to trade one disease for another," says Shellhammer, who had skied competitively while she was in college and who loves riding horses and all kinds of water sports. "I thought having a transplant meant I'd live in a bubble and I'd have to wear a mask."
Today, almost two years after her December 2003 double-lung transplant at UCSF Medical Center, Shellhammer of Woodland, Calif., is working full time in her family's construction business. She is planning her second post-transplant ski season at Lake Tahoe.
"I have to take 25 pills a day, but I don't wake up in the morning thinking Im a transplant patient and I have to be careful," says Shellhammer. But she'll never be as confident about her health as she was back in 1997, when she first began to notice that she felt weak after exercise. Shellhammer was eventually diagnosed with pulmonary hypertension, a rare condition of high blood pressure in the blood vessels in the lungs, and Osler-Weber-Rendu syndrome, a genetic disorder.
Told she only had two years to live, Shellhammer stopped planning a future for herself, visited Europe and tried to cram in as much life as she could. In 2003, her symptoms worsened to the point where she could barely walk. Desperately ill, she was admitted to UCSF Medical Center in November. Dr. Teresa De Marco, director of UCSF's Heart Failure and Pulmonary Hypertension Program, advocated for a lung transplant. In some ways, Shellhammer's timing was fortuitous. Dr. Charles Hoopes, who performed her transplant, had recently joined UCSF to lead the cardiothoracic transplant program, which performs about 30 lung transplants a year.
Hoopes noted that pulmonary hypertension isn't the usual reason for lung transplants. Emphysema patients make up the largest group receiving lung transplants in most lung transplant programs, but about half the lung transplants at UCSF are performed to treat interstitial lung disease. For the past 25 years, through a program led by Dr. Jeffrey Golden, UCSF has been treating interstitial lung disease, which includes a number of inflammatory conditions, such as scleroderma, that scar the lungs.
Hoopes credits part of the program's growth on the availability of transplant lungs through the California Transplant Donor Network. Wayne Babcock, transplant coordinator for the network, works closely with transplant surgeons to optimize the condition of donor lungs. Lungs that would otherwise be rejected for transplant often can be functionally improved with the use of antibiotics and steroids before they are harvested.
But Golden added that Hoopes' willingness to try new things and to consider patients who might be rejected by other programs are also major factors. Patients are evaluated on an individual basis, rather than according to rigid criteria.
Although deceased organ donors usually remain anonymous, Shellhammer learned that her donor was a 16-year-old boy named Joel Hanson. She has since met with Joel's sister, and she observes Joel's birthday on August 6. She doesn't forget that she owes her life to Hanson and his family, and she is faithful about taking her medication and protecting her lungs. The Hanson family's generosity also saved the life of a young man who received Joel's heart. Shellhammer now volunteers in her local organ donor program as another tribute to the Hansons.
"We all have the ability to save someone's life, just like Joel saved mine," says Shellhammer. "My life was going to end at 26 and now I'm living the life I wanted."
Story written in October 2005.
Photo by Christine Jegan