Transplants Go Social

Online, Hopkins Official Describes Donating A Kidney

July 03, 2009|By Stephanie Desmon | Stephanie Desmon,stephanie.desmon@baltsun.com

Robert Imes, a painter and mechanic at Johns Hopkins Hospital, had been too sick to work for nearly a year. When he came back, he ran into Pamela Paulk, the hospital's vice president for human resources, outside her office.

"I said, 'Robert, I really missed you. Is there anything I can do for you?' " she recalls. "He said, 'I need a kidney.' And I said, 'You can have mine.' "

Turns out, she meant it - and she has been sharing the entire experience, blogging about the days leading up to the June 22 surgery and the days since (www.pameladonates.blogspot.com). On Twitter, a social networking site, she's also telling the 140-character version of the transplant and its aftermath, writing for a group of followers at 80 and counting.

"The first morning after surgery that I woke up at home in my own bed, the reality of it all hit me for the first time," Paulk wrote on her blog Tuesday. "I lay there and thought, 'They actually took my kidney out of my body and it lives in another human being now. And I feel perfectly normal just like waking up any other day.' It felt other-worldly. I don't know that I have the words to describe it but I will never forget it."

Many in the transplant community have turned to the Internet. Some use blogs or Facebook to share their stories. Others have taken to the Web in search of organs they desperately need - a hotly debated topic in the organ procurement community.

"Social media has become the way people communicate, very personally, about what's going on in their life," said Dave Bosch, a spokesman for the Gift of Hope organ and tissue donor network outside Chicago. "The good thing is that more and more people are being exposed to the donation message, the need for donation and hopefully the idea that people need to sign up to be donors. It gets the conversation going."

As of Thursday afternoon, there were 80,000 people in the United States waiting for a kidney transplant. Just over 16,000 kidney transplants were performed in the U.S. all of last year.

Today, Imes, who is 54 and lives in Baltimore, remains at Hopkins; he's still not feeling well enough to talk about the transplant surgery that provided what he needed to survive.

How the story starts

Paulk's story begins about a decade ago after she observed a transplant surgery. She started thinking about becoming a kidney donor herself. She worked at the hospital, but since she didn't see patients, she sometimes wondered if she was really living up to its mission.

About five years ago, she decided she was ready to give. But she wanted her kidney to go to someone she was connected to in some way. So she waited. Some time later, she ran into Imes.

"I felt like my life wouldn't be complete until I did this," she said. And giving is the great joy she knew it would be (even if her belly does hurt a little).

As she wrote this week: "I don't know that I have saved the world as the Talmud [a collection of Jewish teachings] suggests or have given my fellow being what I wished for myself as the Prophet Muhammad said but I can tell you that I have received back in a few short days far more than my kidney could ever have been worth. As Saint Francis said it is through this giving that I have been the one who has received immeasurable blessings."

At first, Paulk was reluctant to write about her medical journey.

The Canton resident remembered what her mother used to say: If you give a gift and then brag about it, it isn't much of a gift. But she knew she might be able to turn her tale into a bigger gift, by drawing attention to the need for kidney donors.

Maybe someone else would even decide to follow her lead.

Small windows

The tweets, by definition, are small windows into what Paulk is facing each day. Sometimes, they are simple expressions of thanks for the support of friends and family. At other times, they bring needed levity to the seriousness of transplant surgery.

Two days after her surgery, as she was headed home from the hospital, she tweeted: "An OR staff person just came over and said she thought about being a donor but thought she was too old! She's younger than I am!"

Meanwhile, Paulk truly has started the conversation about donation. Just the other day her brother went to the Motor Vehicle Administration. He made himself an organ donor.

"The wheel has begun to spin," she said.

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