Fateful tweet leads to lifesaving kidney donation

Fateful tweet leads to lifesaving kidney donation

RELATED INFO
Are you a match?
Donate Life Arizona is administered by Donor Network of Arizona, a non-profit that coordinates organ donations and transplants.

For more information on donating, visit donatelifeaz.org or call 800-94-Donor.
‘Social Media Stole My Kidney’
Read more about kidney donor Amy Donohue, her documentary trip and her fundraising efforts at:

Facebook.com/SocialMediaStoleMyKidney.
igg.me/at/kidneydoc.

By Sonja Haller
The Republic | azcentral.com
Thu May 9, 2013 1:35 PM

Perched on the edge of an examination table, Amy Donohue explained to the third person that morning that she was at the doctor’s office for a physical because two years ago she donated her kidney.

The physician-assistant trainee glanced up from his paperwork. “Oh really? Did you donate one or two?”

A beat passed. Donohue tossed her head back, and earthy laughter bounced around the room.

The medical student laughed, too. “I regret saying that,” he said. “I’ve just never met anyone who donated a kidney before.”

“See!” Donohue said. “That’s why I’m changing things!”

Later, Donohue posted the exchange on Facebook and Twitter. Many of her more than 5,000 friends and followers have followed the kidney donation from the beginning.

She started “Social Media Stole My Kidney,” a Web campaign to educate others about kidney donation. An illustration of her, looking like a vintage pinup in a bathtub filled with ice — a nod to the urban legend about the tourist who awakens in a tub of ice with a backache and a missing kidney — is her logo.

She has shared on social media the hilarious and thoughtful questions she has received about donating a kidney.

Can you still go to the bathroom?

Can you have sex?

Can you drink alcohol?

Yes. Yes. And yes she could, but she doesn’t drink.

“I can do everything I did before,” Donohue said. Donating a kidney doesn’t change you, except for being advised not to play any contact sports. “It’s amazing how quickly you can return to normal,” she added.

Make that the new normal. Donohue said her donation did change her in unexpected ways.

The donor

Donohue, 42, is 5 feet, with black, shiny hair and six tattoos. One is red and orange of a Phoenix that spreads across her left arm and shoulder. She’s a social-media expert, handling Twitter, Facebook and other social- media interactions for small-business clients.

Her Twitter handle is @TheFabulousOne. “I’ve always been fabulous,” she said. Although she has performed standup comedy for 10 years, Donohue said she is an introvert, refueling her energy by holing up alone with a book. Her Phoenix apartment shelves hold a biography of Gandhi but also a book on pop star Madonna.

She was taking a book into the bathtub on a Friday night in January 2011 when she heard an electronic tweet from her computer and eavesdropped on a Twitter conversation.

“What’s going on?” she tweeted to Kirti Dwivedi, now a 35-year-old marketing expert. The two were Twitter “friends” but had met only once before at a mutual friend’s party. Dwivedi shared that time was running out for her mother. Diagnosed in 2001 with kidney disease, she needed a kidney or would die.

“I’m in. I’ll do it,” Donohue tweeted.

Donohue sent Dwivedi her phone number that night, and they talked some more.

“Are you serious?” Dwivedi asked Donohue on the phone.

Dwivedi could not donate a kidney because she didn’t match her mother’s blood type. Medical and other reasons kept other family members from donating.

“You have one mom. I have two kidneys,” Donohue told her.

The surgery took place at the Mayo Clinic Hospital in northeast Phoenix, where two years later, after Donohue’s checkup visit to the doctor’s office in late April, donor and recipient agreed to meet.

Just inside the sliding doors, Donohue swung an arm around Anu Dwivedi, called “Tiny Mom” by her daughter, and now by Donohue. It was their second “kidneyversary,” two years since Donohue gave her right kidney, and they celebrated by having lunch at the hospital cafeteria.

Donohue was heading out of town for a trip spurred by the kidney donation. Anu Dwivedi told Donohue she wanted to talk more about it and would call her later in the day.

Donohue told her no. Not today. She was tired.

“Yes,” Dwivedi, 63, insisted. “I am mom.”

“No,” Donohue said, shaking her head.

“Yes,” Dwivedi said, because she worries and wants the best for Donohue and has done so since they first met. “I am mom.”

On May 1, Donohue left Phoenix in her silver Jetta hatchback with independent filmmaker and fellow comic Jimmy Pietragallo to travel 10,000 miles around the United States to make a documentary film about the experience of kidney donation.

They will film the stories of 14 other live donors Donohue has met through social media.

While Pietragallo has written and produced a small-budget film, Donohue has no movie-making experience. The idea came to her while driving with fellow comics to a gig. The duo had hoped to raise $60,000 through online crowd-fundraising sites like Indiegogo to cover travel expenses, Pietragallo’s salary and the movie-submission fees to places like the Sundance Film Festival, the Sedona Film Festival and others. They have raised $25,000 so far.

Dr. Jean Robey, with the Arizona Kidney Disease and Hypertension Center, donated $9,000. Their competitors, the Southwest Kidney Institute, donated $5,000. The kidney-treatment institutes will serve as the movie’s executive producers.

Robey, who treated Dwivedi, said she’s trusting Donohue to make a movie that’s “grass-roots, dirty fingers and totally relatable” because Donohue is and she does what she says.

“Everyone said she wouldn’t donate (her kidney), and she did,” Robey said. “She could have quit for any acceptable reason, but she didn’t. She’s just that person.

“I’m putting my entire reputation and my company’s reputation behind this.”

The documentary is a for-profit endeavor, although Donohue is awaiting Internal Revenue Service approval of tax-exempt status for a non-profit she is forming, One Kidney Is Enough. The non-profit will serve to educate and advocate for donors.

The patient

Anu Dwivedi is easy to laugh, sweet-natured but can be stubborn, said her daughter, Kirti Dwivedi. Her mother did not want to go on dialysis, though her kidneys, which her family believes were damaged by large doses of ibuprofen during a hospital stay, were functioning at less than 20 percent.

It wasn’t until Kirti asked Anu to get on the donor list as a birthday present that she consented.

Still, when Kirti told her mother she found a willing donor who turned out a match in blood type, Anu remained skeptical.

She asked her daughter a series of questions:

Is she single? Anu didn’t want to risk taking a kidney from someone who might need to give it to a child or spouse.

Yes.

Tell her not to give me her kidney, she responded.

How old is she? Forty.

Tell her not to give me her kidney.

Do you know this person?

I do now, her daughter told her, adding that she should at least meet Donohue.

The two met on Feb. 12, 2011, and upon seeing Donohue, her hair a golden color this time, the two embraced.

“Yes. She’s the one,” Anu said.

“I told her, ‘You feel like my daughter.’ ”

Four weeks later, the tests were completed. Donohue’s kidney was a match.

Impulsive move

Donohue, too, can be stubborn, ignoring friends and family who cautioned her against sporting multicolor mohawks in the small New York town where she was raised. Or heading to California with her boyfriend upon high-school graduation. Or moving to Arizona after a single visit upon separating from her husband. Or saying yes to donating a kidney without taking more time to think about it.

“She gets an idea and goes with it and doesn’t really hesitate,” said her sister, Lisa Hogue of Orange County, Calif.

Donohue suspects she will always be impulsive, but it’s better than being scared. “There’s already too much fear out there,” she said.

Although impulsive, big gestures may mark her life, Donohue said small gestures took on a greater importance after she donated her kidney.

“I remember the friends who came to see me after I got out of the hospital. I remember who didn’t,” she said.

She thanks every person who forwards a tweet about kidney donation and thanks everyone on social media who has donated to her documentary endeavor, including an elderly woman who gave her $10 to buy a sandwich on her trip.

It’s illegal to donate a kidney for money, so Donohue received no money for the donation. All her health-care costs, however, were covered as a donor. Donohue has no health insurance.

People ask her why she donated. Her father died of oral cancer 10 years ago. She couldn’t do anything for him.

“But here was someone I could help,” she said.

Every day, 18 people in the United States die while waiting for an organ transplant. In Arizona, more than 2,300 people need a transplant. About 80 percent of them need kidneys, said Kris Patterson of the Donor Network of Arizona.

At Mayo Clinic Hospital, surgeons transplanted 218 kidneys in 2012. Eighty, or 37 percent, were from living donors.

Kidneys that come from live people have a better chance of success.

Donohue donated her kidney to Anu Dwivedi on April 19, 2011. During the surgeries, doctors made a discovery that they had missed with their CT scans of both women’s kidneys. Donohue and Dwivedi each had an extra renal vein that could be perfectly matched up.

“You see? It was meant to be,” Anu said. “I would not be alive today if it were not for Amy.”

Talk to Donohue too long about her kidney donation and she’ll start to cry. She cries all the time now.

“And I’m not a crier,” she said. “I never was before.”

She cried when other donors reached out through social media and shared their stories. Donors like Lauren Herschel, who donated a kidney to an anonymous recipient in 2011 in Canada. Donohue is flying her from Canada to New York so she can appear in the documentary.

“I was so flattered she would recruit me. We both want to do the same things where we live — it’s not as big a deal as people think for donors, but it’s a very big deal to (recipients),” Herschel said. “And there needs to be more information out there about what donors can expect to experience.”

Last May, Donohue went to Mayo Clinic Hospital to visit another woman she met via Twitter before she went into surgery to donate her kidney.

“Tiny Mom says I saved her life,” Donohue said. “But I got way more out of it. I’m a completely different person.”

http://www.azcentral.com/community/phoenix/articles/20130430phoenix-fateful-tweet-lifesaving-kidney-donation.html