Founding a foundation Founding a foundation Double lung transplant recipient wants to send patients on vacation Kyle Peveto | Advocate staff writer June 20, 2013 Comments Jamie Crane knows the statistics and important milestones. He knows that in the 1980s, a child like him, born with cystic fibrosis, could expect to live into young adulthood. And now, at 27, he is told that 55 percent of lung transplant recipients survive beyond five years. He’s just passed year one. “To me that’s just a number,” he said. “I’ve got plans for things five, 10, 15 years down the line.” He started a nonprofit, the Transplant Dream Foundation, to help give transplant recipients vacations. And he has notebooks full of ideas and funny stories for speeches he plans to give. Just married in October, Crane wants children, too. “If I’m going to be a dad, I don’t have time to exit this world,” he said from the small office he rents for his foundation work. “I just want to be me … and try to be nice and try to be happy and enjoy the time I have left.” Growing up with cystic fibrosis, a chronic disease that causes the body to produce thick mucus that clogs the lungs, Crane endured many surgeries and took heaps of medications. His parents tried to make his life as normal as possible, even as he regularly spent days at the cystic fibrosis clinic at Tulane University School of Medicine in New Orleans. The most special place during Crane’s childhood — the location Crane most associates with a happy family, he said — was Walt Disney World. He has visited 13 times and plans to make it 14 in October for his brother’s wedding. When Crane was born in 1986, his mother knew he had cystic fibrosis. The Cranes’ infant daughter died of the disease in 1978. Jamie Crane’s first surgery a few days after he was born left a scar across his abdomen. Since then, he has had a dozen operations. Like most boys, Crane loved football growing up and had dreams of being a quarterback. Playing high school basketball at Christian Life Academy, he noticed for the first time, he said, issues with his lungs. In his 20s he became sicker. Between the ages of 18 and 26, Crane needed intravenous antibiotics several times a year. Attending class at Baton Rouge Community College became difficult. By January 2012, he could barely make it to class without panting. One evening, his oxygen level dropped so dangerously low he had to be rushed to a clinic for supplemental oxygen. The next day he visited his doctors at Tulane. “Nothing scares me, especially when you’ve been through hell like me,” he said. “But I was scared.” A doctor said he had no choice but to place himself on the lung transplant list, that he wouldn’t survive into the summer without it. He said he had never thought about that before. “Everybody’s going to die some time. Everybody,” he said. “But when you’ve got a disease, you know for a fact is probably going to kill you, that’s not an easy thing.” Waiting for the transplant, Crane slept on his mother’s couch and occupied his mind by building projects with Lego blocks. He suffered a panic attack for the first time in his life in March 2012 and was taken to the emergency room. The day after his attack, his mother opened a fortune cookie that read “Unexpected miracles will arrive soon.” That night, at 11, his transplant coordinator from Ochsner Health System in New Orleans called him. In surgery for 11 hours, he was able to breathe on his own after eight hours on a ventilator. Gone were the rapid gasps and wheezes of his afflicted lungs. “The scariest thing was that at night, when I tried to sleep, I was breathing so softly that I couldn’t even tell that I was breathing,” he said. He compares living with a double lung transplant to trading one disease for another. He takes 30 pills each day. And doctors inserted 11 chest tubes in him last year, pocking his body with more scars. Holding down a job with his condition became difficult, so he works part time with his father, a longtime insurance agent. Last year, when he began thinking of what his life’s work could be, he decided he wanted to give trips to Disney World to people like him, those who have lived with a lung transplant and need something to take their minds off the statistics and the possibilities. “There is so much stress and anxiety leading up to the transplant and then the physical aspect and the emotional aspect kicks in after the transplant because of rejection and all those other things that they deal with,” said Erin Achberger, executive director of the Louisiana chapter of the Cystic Fibrosis Foundation. “Their lungs are new, but their whole body is fighting against them.” Starting a foundation from scratch has been difficult. He needed help from friends and family and an attorney to complete all the Internal Revenue Service paperwork to become a nonprofit. Hurdles remain with the IRS. And raising money — in a world filled with worthy charities — has been difficult, Crane said. Others say Crane is a natural speaker and fundraiser. Last year at an event in Lafayette, Achberger watched Crane raise more than $31,000 for the Cystic Fibrosis Foundation in a three-minute speech. “I think he’s like one of those great coaches you see on TV, on movies,” said Achberger. “He tells a story and by the end of it, everyone’s cheering and clapping and really wanting to do something for (cystic fibrosis).” To contribute to the Transplant Dream Foundation, visit http://www.facebook.com/TransplantDreamFoundation or email Crane at Transplantdreamfoundation@gmail.com.