Photographer David Y. Lee usually starts with the easy stuff.
Sitting in the living room of a sunny Sacramento midtown Victorian on Tuesday, he asked resident Amy Starr about her former job as a bartender, her interest in bicycles and her dachshund Bullwinkle, all before getting to what Starr calls “the elephant in the room” – the bag wired through her abdomen and attached to her at all times.
The bag contains the battery charger and other necessary accessories for the left ventricular-assist device in Starr’s chest, a pump that sustains her failing heart while she waits for a lifesaving transplant.
Lee, a freelance photographer who has covered the White House for Time and Newsweek, was in Sacramento last week collecting stories like Starr’s for his Facebook and Instagram campaign, “The Waiting List.” On it, he posts photos and narratives about people who have been affected by organ donations. Some are happy. Some are sad. Some, like Starr, are hanging in limbo.
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“I’m done feeling like I’m playing the sick card,” she said. “I don’t like feeling like when I go out people are treating me with kid gloves. I want to go head-on … I want to just do things. I don’t want to just sit around and wait for the next shoe to drop.”
Starr, 37, was asked to participate in the photo shoot by staff from Sierra Donor Services, the organ donation network for Sacramento and 10 surrounding counties. There are about 1,300 people waiting for organs in Sacramento, 22,000 across California and 123,000 nationwide. About one in three people die while waiting for a transplant, said Tracy Bryan, director of public relations for the nonprofit.
The organization first contacted Lee this spring after learning of The Waiting List, which he started in 2008. During his first trip to California’s capital, Lee captured about 20 stories with the help of Sierra Donor Services, some of which were featured in National Geographic. The organization reports an 11 percent increase in donor registration since partnering with Lee and sharing his photos on their Instagram account.
During Lee’s weeklong stay in Sacramento, he met a handful of people for individual photo sessions, and dozens more at the Sierra Donor Services meet-and-greet. When working with subjects, Lee said he tries to get a feel for their personality before taking out the camera. He usually shoots them in their homes, where he can make them feel comfortable.
He takes photos with his iPhone, for immediate posting, and with his digital camera for more professional portraits that he posts later. The page has 8,300 “likes” and inspires dialogue among followers from all over the world. People often post photos they’ve taken themselves.
“Facebook looks updated – it’s alive, it’s changing, it’s breathing,” Lee said, explaining why he moved from a website to social media. The photographer’s hope is that viewers will be inspired to register to donate their organs after death, he said.
“It’s an issue where you don’t need money,” he said. “It’s not like breast cancer and diabetes. Organ donation just needs you to sign up. Hypothetically, you just have to give somebody the link.”
A name is added to the national organ waiting list every 13 minutes, Bryan said. Though California has the largest organ donor registry with 11 million people, only about a third of its population is signed up. Residents can register to be a donor at donateLIFEcalifornia.org, or at the Department of Motor Vehicles when receiving a license.
There are a few misconceptions and cultural barriers that make people reluctant to register, said Bryan, including the fear that medical care will be compromised for donors or that organ donation is incompatible with certain religions. Bryan said she hopes Lee’s work will help alleviate those fears.
The risk of end-stage kidney disease is about three to four times higher for African Americans, Latinos and American Indians than it is for whites. Those groups make up more than half of the people waiting for kidneys nationwide.
“If you can put a real person and a real story out there and touch people’s hearts, that’s what gets people to consider signing up,” Bryan said. “It brings out the best of our humanity when we can understand and provide hope to others. It’s a win-win.”
Starr, who has been on the waiting list since July, said she was told to expect a six- to nine-month wait for her transplant. Her heart was damaged during the nine months of chemotherapy and radiation she underwent while being treated for Hodgkin’s lymphoma, which she was diagnosed with in 2005. A cherry blossom tattoo on her left arm reminded her that the cancer, like the tree, was only a temporary thing. She didn’t know then that it would be affecting her years down the road.
Now, with her portable heart pump, Starr can live comfortably with some help from her mom, Susan. But her hospital bags are packed, she said, and she is ready for the call when it comes.
“They’re going to give me a new heart,” Starr said. “It’s like getting a new battery for the car. I won’t need jumper cables.”