Fate, social networking draw two women together in hopePublished: Sunday, June 13, 2010 3:44 AM EDT
Flash back 11 years.
Sara Steelman, Indiana's representative in the Pennsylvania State House, was fighting for tougher requirements for teenagers to get their driver's licenses.
Sarah Taylor plied her culinary skills, running her own business, Sarah's Catering, serving parties and gatherings of all sorts in Indiana County.Nothing there to tie their lives together.
It was business as usual for Steelman, scripting remarks for the annual John Mitchell Day observance by the coal miner's union.
*
Anything but business as usual for Taylor, though, as she was stricken with a dissected aorta and aneurysm that left her paralyzed from the waist down and in respiratory and kidney failure.
It was March 28, 1999, and Taylor's condition was dire.
``The doctors gave my family no hope,'' Taylor said. ``They told my family to get my affairs in order.''
The worst-case scenario didn't come to pass as doctors predicted, but the day set in motion an unlikely series of events leading Taylor and Steelman's lives to be inextricably linked this week.
Taylor will undergo a kidney transplant operation Tuesday. Steelman is donating one of her own healthy kidneys that doctors expect to stave off Taylor's renal failure.
To understate it, their cooperative venture flies against popular conception that live-donor transplants are best done among blood relatives. It goes past the notion that, outside a family, people in the same church congregation or tight social circle would embark on such a major life event.Instead, both Taylor and Steelman - and officials at Allegheny General Hospital - want their medical match to stand as an example of the power of current-day communication technology and social networking to improve and even save lives.
In short, Taylor and Steelman got hooked up for this operation over the Internet, on Facebook.com.
``People just don't survive that,'' Taylor said. TV star John Ritter, for example, died of the same condition.
``An aortic dissection is a serious condition in which a tear develops in the inner layer of the aorta, the large blood vessel branching off the heart,'' according to the Mayo Clinic website. ``If the blood-filled channel ruptures through the outside aortic wall, aortic dissection is usually fatal.''
Taylor's aortic dissection healed itself. She recovered from respiratory problems.
``For some reason, I survived,'' Taylor said. ``I think it was because I'm meant to be here to do other things - to take care of my dad before he passed away, and to take care of my mother.''
Taylor, 53, lives with her mother, Constance Taylor, in the 700 block of Water Street, in the long-time family homestead set back at the top of Vinegar Hill.
But Taylor's lower body problems lingered because blood flow was cut off from her femoral arteries.
For five or six years, Taylor said, she used a walker or a cane to get around, but she now walks unaided.
Her kidney damage, however, was irreversible, and her kidneys deteriorated slowly. Doctors told Taylor about 2½ years ago that she had gone into last-stage renal failure.
Steelman informally met Taylor in 2002 after Steelman hired her sister, Amy Taylor-Liboski, to work in the 62nd District office in Indiana.
Steelman exited the state house in 2003, served as director of the Indiana Arts Council until 2006 and has maintained a schedule heavy in community service on boards of directors of several groups and agencies the past few years.
Her path crossed Taylor's again as members of local amateur theater troupe The Indiana Players. Steelman, Taylor and Taylor-Liboski were among the cast of ``The Women'' staged in August 2006 at the Philadelphia Street Playhouse.
Their social relationship wasn't one that most people would see as a foundation for one taking the other aside for a somber, personal appeal for a life-saving organ donation.
``I came home and for two weeks I was extremely depressed - I cried every day, I had no idea where I would get a donor.''
Taylor's doctor in Indiana had delivered the sobering prognosis. Her kidneys were functioning at 14 percent efficiency, she said, and only a transplant or dialysis would save her.
Taylor refused dialysis and drastically changed her diet and activities to reduce the demand on her kidneys. She went to kidney specialists for ongoing tests and was placed on a donor waiting list July 21, 2009, according to Janice Glidewell, the transplant manager at Allegheny General Transplant Services in Pittsburgh.
She was told she would reach the head of the list in about four years if she waited for a cadaver donor.
Taylor said the transplant officials also gave her the guidelines for finding a living donor: someone between 18 and 64 years old and matching her blood type (O).
``They can't be diabetic, have high blood pressure or be obese,'' Taylor said. ``That rules out half the population or more, with our culture today.''
Nowhere do the guidelines say the donor must be a relative or lifelong friend. Not that Taylor didn't try first at home. None of her sisters matched. She became anxious.
``I don't go to church, although I am spiritual. I don't belong to any clubs,'' Taylor said. ``I fretted about how I could let anybody know I needed this.''
Late last year, Steelman said, she had been giving thought to being an organ donor, but above and beyond having it stamped on her driver's license.
Medical and logical reasons drove her to learn more, particularly an article in The New Yorker that, in part, mentioned websites designed especially for connecting patients and willing donors.
``The author ... used that as a framework for the importance of living donors and how valuable it is to keep people in renal failure from going on dialysis, and how difficult and expensive it is for people that are on it,'' Steelman said.
The average cost of a living-donor kidney transplant is $40,000 to $60,000, from the start of match testing through the surgery and follow-up care, said James Riley, the living-donor advocate at Allegheny General.
``Compare that to the cost of dialysis: $144,000 a year,'' Riley said. ``For the average four years someone is on the transplant waiting list, dialysis costs $576,000 per person. It really behooves the whole system, insurance and all, to get these people transplanted.''
Steelman said she examined the natural priorities as well. No one in her own family is in imminent need of a kidney transplant. And approaching 64, Steelman said, her own window of opportunity to donate would soon be closing.
And she said her faith supported it.
``We're Unitarian Universalist,'' Steelman said. ``You should live out your beliefs, and if I believe in the greatest good for the greatest number, this is a way to be that.''
It was November.
Steelman said her next step would have been to perhaps phone UPMC, or to learn how to connect with a medical network and search for someone in need
At the same time, Taylor considered unconventional ways to get a matching live donor.
Being out of work because of disability since 1999, Taylor found herself getting adept at computers and the Internet.
``I thought, `I don't have anything to lose and I have an awful lot of friends from high school on Facebook,''' Taylor said.
``So I put it out there to see what I would get. I solicited on my page that I was looking for a kidney and listed the criteria.''
Taylor got 50 responses within a day. The total climbed to 197 responses.
Old high school classmates came forth. Newer friends. Friends of friends. ``People all across the country ... a girl from New Zealand offered to be tested,'' Taylor said.
And Steelman found Taylor's plea on her Facebook news feed.
``When I saw Sarah's post, it seemed like a good thing to follow up on,'' Steelman said. She made her offer.
Taylor directed all the responses to Allegheny General, where Glidewell's office sorted them out, winnowing them down through questionnaires before formally bringing in four people to test their blood, check their medical history and evaluate their health status.
The extensive screening went on for months. Doctors decided in May that Steelman was the best match for Taylor.
Facebook isn't a leading organ donor-recipient matching tool, but it's far from being the only one on the Internet, Glidewell said.
The hospital has seen people matched through blogs and on websites such as
www.livingdonorsonline.org.
Web-enabled searches hasten transplants through the ``paired donation'' concept, Glidewell said.
A kidney-failure patient and a willing donor of a differing blood type submit their profiles to a database. A review of other incompatible donor-recipient pairs often turns up people with the right qualifications for the first pair, enabling two transplant operations, Glidewell explained.
Patients and donors sometimes are independently matched online.
``It gets a lot more transplants completed versus waiting on the candidate list for a deceased donor,'' Glidewell said.
It's a concept Taylor, Steelman and Glidewell want more people to embrace.
``Across the nation, people think it has to be a family member,'' Glidewell said. ``It doesn't have to be .. it could be a coworker or an altruistic donor. That's the usual approach we take. We ask them to use their social networks.''
Society is warming up to the concept, Glidewell said.
Allegheny General has been doing live-donor transplants for almost 18 years, and has averaged 15 a year. So far in 2010, the hospital has completed 16. And in the fiscal year that began last July, there have been 23.
``It's getting more common as the waiting list grows,'' Riley said.
For an invasive procedure, it's the preferred one.
``People on dialysis end up waiting for years and a lot of patients die while on dialysis,'' Glidewell said.
``The concept usually is that the transplant is an elective procedure. It should not be that way. It should be that it's more of a necessity to save lives, because thousands die on the waiting list.''
Steelman said the live-donor process is like the opportunity for someone to save another who's drowning - only more drawn out.
``If you felt you had a chance to save them without dying yourself, you would do that automatically,'' Steelman said. ``This is a situation where the chance of a donor dying is considerably lower than that of someone who jumps in the water. And you have a long time to think about it.''
Steelman said the transplant doctors have repeatedly assured her she can expect to lead life normally with one kidney.
``I'm likely to die of something else before kidney problems,'' she said.
``In fact, getting to the hospital is likely to be more dangerous than the procedure itself.''
Taylor and Steelman are to be on a liquid diet starting Monday morning. They figure to stay Monday night in Pittsburgh because Allegheny General has asked them to report in at 5 a.m. Tuesday for surgery that could begin as early as 7 a.m.
Doctors will take Steelman in for removal of one of her kidneys before taking Taylor in for the implant of the organ.
Both could go home as early as Saturday, Glidewell said.
Taylor, clearly, will have more follow-up care: lab work for three or four months, weekly visits to the hospital, then once or twice a month while doctors study her creatine levels for kidney function.
Glidewell said the hospital would keep tabs on her for ``the life of the transplant'' and refer Taylor to her family doctor.
Steelman will have follow-up visits in two weeks, six months, one year from now and two years later, Glidewell said.
``We request patients to continue testing after the third year, but it is only required up to three years,'' Glidewell said. ``Basically the living donor goes back to a normal life.''
``The most tedious part of this is going to be that neither of us will be allowed to lift anything weighing more than 10 pounds for the next six weeks,'' Steelman said. ``This rules out a lot of things I would do on a daily basis.''
Taylor said she has accepted the realities that go with a transplant. There could be rejection.
Even if the transplant succeeds a donor organ has a life expectancy of about 10 years - so she'll be in the same situation a decade from now.
``Maybe by then they will have made a lot of advances. There could be a plastic kidney, or a pig kidney,'' Taylor said.
Without exception, the transplant trumps dialysis.
``This operation represents the triumph of socialized medicine,'' Steelman said.
``This is entirely financed by Medicare. They are paying all the expenses both for Sarah and for me, the medically related expenses, because Sarah worked long enough that when she became totally disabled, she was qualified for Medicare.
``And Medicare economists have determined that getting someone a kidney transplant is less expensive than keeping one on dialysis.''
The entire experience has galvanized Taylor's faith in basic human goodness.
``I have always believed that, given the chance, people want to help,'' Taylor said. ``If people know you need help, they will step up and help you. But it's so hard to ask for help - it's not a natural thing to say.
``I think this is an extraordinary thing for someone who you don't know but just know who they are,'' she added.
``People in Indiana think they know Sara Steelman, but believe me, they don't know Sara Steelman.''
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