|The surviving and thriving of Jamie Crane|
The scar's so straight, it's like a ruler.
Through it, Jamie Crane measures out a new life.
The mark runs vertically, the entire length of Crane's chest, over the sternum, that plate of bone you might call the heart house, a thick shingle that shields all our precious organs from the world.
Behind it sits a new, stitched-in set of lungs that Crane received on March 29.
Through those lungs rush a life that Crane, age 26, wasn't meant to have. A summer of walking on green grass; of days so long they feel like forever. A summer of love, as Crane and his fiancée, Kristin Koch, plot the details of their wedding next month.
Crane is always smiling.
And don't tell him about the statistics.
They say he's got a 50% five-year survival rate, 20% after 10 years. He's never been much for statistics. Even a perfectly healthy young man can shoot toward heaven without a whisper of warning.
“Even if it's a week, a month, a year, I deserve it,” he says. “There's something I'm meant to do.”
Crane doesn't know much about the 27-year-old donor he calls a hero, who used these lungs till he lost his life in March. In that dark hour when nothing in the world could possibly feel right, the man's family had to decide that organ donation was the best thing to do.
“He donated six organs, saving five lives,” Crane says.
The lungs were beautiful—the best lungs transplant doctors Rey Rampolla and Kendra McAanally and surgeon Gene Parino had ever seen.
The best lungs Crane has ever had.
“The moment I took in my first deep, deep breath, I had tears running down my face,” Crane says. “I said to myself, 'So this is what it's like to breathe.'”
From the moment he was born with Cystic Fibrosis 26 years ago, Crane couldn't trust his own breath. Life meant inhaling and exhaling as if through a scuba tube, thick, conscious breaths with a tempo and timbre that was so overbearing Crane had trouble getting used to the feeling of going to sleep without struggling after he got his new set of lungs.
“My heart overflows with gratitude every time I watch my son as he sleeps,” says Jamie's mom, Linda Crane. “His chest rises and falls in a slow, soft, quiet rhythm using lungs that were born in another body.”
Cystic Fibrosis—CF for short—is a genetic disease that causes mucus to build up throughout the body, especially in the lungs and pancreas. About a thousand kids are born with CF each year. They inherit the disease-causing genes from their parents. As many as one in 31 Americans carries the defective gene that causes CF. It takes two copies of the gene—two parents who are carriers—for a child to inherit the disease.
Not every child born to a couple that carries the CF gene end up actually having CF. Crane's three older brothers, Kyle, Hunter and Brady, don't have CF. But a sister born in 1978 passed away when she was an infant due to the disease.
“We knew in the delivery room that Jamie had CF, as he had the same 'Buddha' belly his sister Mandy had when she was born eight years earlier,” Linda Crane says.
The average life expectancy for someone who has CF is 38.
This might explain why, at an age when many of his peers are just waking up to their lives, Crane says, “I don't know how much longer I have, but I've lived long enough.”
Crane talks about living in “CF years”—a bit like the arithmetic people do to discuss the ages of their hounds.
“In CF years, I'm probably like in my 50s,” he says. “I've always thought I was much more mature than other people my age.”
After Crane got put on the transplant list in February, Linda Crane says, she experienced a wide range of emotions.
“My prayer for the donor was for final days filled making loving family memories and realizing God's purpose for their life,” she says. “Now I pray for peace and comfort for the loved ones grieving their loss.”
She's spent a lot of time praying over the years.
“We never hid anything from Jamie as far as the negative issues with CF, but emphasized all the positive things.”
When he was growing up, Crane stopped people from feeling sorry for him.
He was more inclined to look at his illness and say in your face as he went after running sports such as basketball, despite the fact that, at age 13, he stood 4 feet, 11 inches and weighed 73 pounds.
His take: Who cares if he'd have to work harder than even the most serious jocks just to trot on the junior varsity squad?
He was up for it. He'd school folks on hard work alone, batting that ball out of their fingers.
“A lot of my competitiveness came out of knowing I was at a disadvantage,” he says.
“I never wanted any sympathy, and I still don't. I don't mind you praying for me, though.”
Crane went on after high school to coach kids in the nuances of the sport at Christian Life Academy. He plans a career in sports management or coaching.
Last spring, his lungs were pretty much finished, working at just 19% capacity. Just walking from his car to class at Baton Rouge Community College felt like running a marathon. Uphill. Crane fought back.
When the transplant team pulled his lungs out, they were red with infection
“They were my enemy for 26 years,” Crane says. “I wanted them out.”
Crane sets the bar high for anyone he meets. His Facebook page feed is a little Tony Robbins, a little Jerry Lewis. Lots of quotes about pursuing your dreams today, visualizing your way to success and raising money to conquer CF.
Right now, Jamie lives with his older brother Kyle, 32. Kyle compares their relationship to that of Bert and Ernie.
Each day, Jamie Crane is up at 6 a.m. He works out and plays golf—the one sport he's been cleared to pursue since transplant—during the wee hours, mornings that used to be devoted to the breathing treatments that kept his old lungs going another day.
“Since the transplant, he has made the most of every day, doing things he always wanted to do but never could,” Kyle Crane says. “These are things we all take for granted and should aspire to, even if it means waking up before noon in my case.”
One of the things that Jamie Crane wants desperately is to become a father.
He and Kristen Koch, his fiancée, will pursue having children soon after their wedding this fall. They simply don't know how long they will have together, and they want to make the most of it.
After she met Jamie through mutual friends, Koch says, she realized that she couldn't let her feelings for him be steered by the fact that he had CF.
“Anyone who spends any time with him knows he's not someone to pity,” she says. “He's someone to be proud of and be inspired by. He doesn't wear his disease as a cape of 'pity me, help me,' that sort of thing. He is always wanting to help other people.”
On East Tunica Road, outside of St. Francisville, a Romanesque stone church sits in a grass clearing, abandoned. In 1947, the people of the church wrote it off as finished. Deconsecrated, hidden by forests, it might be a lost cause.
But step up to the doorway. Light streams in. Bricks exposed in the nave, placed by hands that had to have prayed, are radiant. The church's ribs rise to the sky, full of wind. It's more beautiful than most city churches that are crowded with weddings. Here, Crane and Koch will say their vows. They've come a long way to get here.
Koch was at Ochsner Medical Center in New Orleans day and night during Crane's transplant ordeal. She could often be found kneeling at Crane's feet, or perched on the side of his bed. He says there's no better way to prepare for married life than going through a lung transplant together.
When two young people get married, making vows they'll be united “'til death do us part,” the actual idea that one of them might pass away is a distant mirage.
But each day, Crane and Koch face the notion that he won't be around long enough to see their kids graduate from college and embark on their own lives.
“It's a very real possibility that it won't be the typical story that two people who get married have, where you dream of happily every after and grey hair and all that,” Koch says.
But that new set of lungs? It's made this marriage a possibility they weren't sure they had before. If Crane and Koch don't jump on this chance, then what would be the point of living?
“To be really cheesy and quote Garth Brooks, 'I could have missed the pain/
But I'd have had to miss the dance,'” Koch says. “It's a choice you make. There are vows you make, and you don't know, from that point, if you have a day, a week, a month, a year, 10, 20, 50 years.”
Crane is determined. A cure for CF is just around the corner, he believes, and new breakthroughs in medication will make a difference, too.
“I need to stick around,” he says, “because I love this woman.”
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