'I have my life back': A year on, donor pair bond for cause (facebook donor)

[Karol]

'I have my life back': A year on, donor pair bond for cause (facebook donor)

Posted: Wednesday, June 15, 2011 3:00 am | Updated: 12:21 pm, Wed Jun 15, 2011.
By CHAUNCEY ROSS chauncey@indianagazette.net

As it turns out, Dr. Ngoc Thai not only has a deft hand at kidney transplant surgery, he's something of a salesman as well.
The doctor led Sarah Taylor's life-changing transplant operation last year at Allegheny General Hospital, but only after convincing many other physicians on the surgical team that Taylor was a worthy candidate for getting a new kidney.

But no one told her that before the operation.
"I had no clue all that was going on," Taylor said Monday. "I had a team of 12 and half of them said, 'No, it's not good for her, she won't make it.'"
The details came out during one of her periodic checkups.
The operation came off one year ago today. Taylor, 54, of Water Street, Indiana, had reached the final stages of kidney failure and faced going on dialysis to clean her body of toxins.
Her kidney trouble began in 1999 when she suffered a life-threatening aortic dissection and aneurysm.
What Taylor learned recently was that half the doctors in the AGH transplant program were ready to veto her operation, believing there was a high risk of failure because of her medical history.
"Finally, Dr. Thai said to them, 'Look, I think she survived an aortic dissection with aneurysm for a reason, and I think if we don't give her a try at this surgery, she's not going to live.
"'So let's at least see what happens,'" Taylor said.
Thai cleared the way for the operation that caught popular attention in the region and in national online media for the way it came about.
In late 2009, as Taylor's kidney function diminished and she faced a years-long wait for a cadaver organ for transplant, she posted an appeal for a living donor on the Facebook social networking site.
The request was relayed around the world and drew hundreds of responses within days. Remarkably, when doctors sorted and screened all the offers, the last donor candidate standing was Taylor's virtual neighbor, Sara Steelman, of North Sixth Street, Indiana.
A year post-op, neither has related negative medical issues.
"It almost startles me now when people ask how I'm feeling," said Steelman, 64, downplaying the after-effects. Her smaller scars have almost disappeared, she said, and a bout of tennis elbow now is her main concern.
"No one asks me about the inflammation in my elbow!" Steelman said.
Doctors asked Steelman to return to Pittsburgh every six months to check her weight and blood pressure, but they're letting her phone it in, she said.
Taylor will be on anti-rejection medicine and checkups for life, and the transplant program wants to keep closer tabs on her recovery. But trips to Pittsburgh every six months will be reduced to annual visits, she said; some of her prescriptions have been discontinued and she's allowed to do nearly everything she did before the operation.
Occasionally she's been asked whether any of Steelman's personality came with the kidney.
"I know I'm on Sara's time schedule, because I wake up at 7:30 in the morning. Before, I was getting up at 12, so I thank her for that every morning," Taylor said.
And as a staunch Republican, Taylor said, she took some teasing about getting a kidney from Steelman, a stalwart Democrat.
But Taylor said she's 30 pounds lighter and has been cleared to resume a vegetarian diet. Doctors told her to eat meat as part of a more balanced diet for a year after the operation.
"From the very beginning, they've been shocked with my numbers," Taylor said. All her blood tests for factors reflecting kidney function are coming back normal.
But there's more.
"I couldn't walk 25 feet before (the operation), now I can cover half of Indiana. That's amazing!" Taylor said, beaming.
And that's inspiration for what Taylor wants to do with her newfound physical vitality -- to get out and promote live organ donor transplant registration, encourage kidney patients to opt for surgery instead of dialysis and to support the National Kidney Foundation's patient service and education campaigns.
It started with small steps.
Two weeks after the operation, Taylor and Steelman agreed to meet the media in Pittsburgh to share their story.
Last fall, they attended a youth event at Indiana University of Pennsylvania, where they encouraged teenagers going on 16 to check the organ donor box on their drivers' licenses.
Today, Taylor and Steelman had planned to visit the patients and staff at the dialysis unit at Indiana Regional Medical Center with orange balloons and buttons displaying the Kidney Foundation's "Love Your Kidneys" slogan. Taylor also wanted to drop off a handful of literature promoting kidney transplantation.
Steelman said one key to saving more lives through transplants is to make people more aware that it saves money: The cost of a transplant is less than that of one year of dialysis.
And Steelman said kidney transplantation has to overcome a couple of image problems.
UPMC Presbyterian in Pittsburgh recently disciplined two members of a kidney transplant team who reportedly missed a positive test for hepatitis C in a living donor before a kidney was transplanted to a recipient.
And in Arizona, state political leaders slashed $1.2 million of kidney-transplant funding through the state's Medicaid program to help close a budget deficit while slashing corporate taxes by $500 million, Steelman pointed out.
"On the other hand, they also did some construction work that cost $1.7 million, so it's clear that putting a new roof on a veterans memorial was more important to them than keeping people with kidney problems alive," Steelman said.
Pennsylvania Medicaid coverage paid transplant expenses for both Steelman and Taylor.
Down the road, Taylor said, she expects to organize a fundraising walk on behalf of the kidney foundation. And she's been well stocked with promotional buttons, wristbands and license plate frames to give away and bring attention to the cause.
She could be the foundation's ambassador for awareness in Indiana County.
"I think there are so many people with kidney disease that you just don't know about," Taylor said. "It's always been that 'quiet disease.' We want to light a fire under it.
"Every year, 80,000 people die from kidney disease that don't have to die."
Taylor believes spiritual undertones have brought her to this point. Knowing that Dr. Thai is Christian and that the transplant team prayed for her before the operation gave her comfort, she said.
"I've been struck by the Holy Spirit at the healing Masses at St. Bernard's, so I know I have a light in me," Taylor said. "They took me in the operating room and they all prayed over me, which I think is very cool.
"This whole year has been enlightening, awakening. … I feel like I have my life back, and I can look forward to what I can do."

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