Donor advocate needs a kidney

Sunday, June 10, 2007

Donor advocate needs a kidney

JEREMY DUDA - Daily Herald

When Shirley Thomas drove past a billboard for the National Kidney Foundation, it was the first time she had ever really thought about organ donation. With the sense of invincibility that most 21-year-olds have, her son, Dustin, had thought about it even less.

"I said to Dustin, 'You know what? When I die I want to be an organ donor.' And he just kind of looked at me and chuckled and he said, 'Not me. I'm going to use mine up,' " she recalled of that day in early 2002. "Just jokingly, is the way he meant it."

But six months later, Dustin died suddenly, and his parents decided to donate his organs. Thomas became a tireless advocate for organ donation, spending the next four years speaking to high school students on behalf of Intermountain Donor Services (IDS).

Many of the teenagers Thomas spoke to were moved by Dustin's story, and some told her that they wanted to be organ donors, too.

Now, Thomas, who lives in Salem, might end up being a beneficiary of all that advocacy.

In November, doctors told her that she needed a new kidney.

A silver lining in the darkest cloud

Dustin seemed as healthy as a 21-year-old could be. During the presentations she would later give at high schools, Thomas would start out by showing the students a picture of him and asking them if they thought he seemed healthy, and a chorus of affirmative answers would invariably rise up from the crowd.

The students are always surprised to learn that it wasn't a car wreck or some other chance accident that took Dustin's life.

In June 2002, his family was surprised, too, because there was never much of an explanation. The autopsy indicated "natural causes."

"I don't know what's natural about a healthy 21-year-old dying," Thomas said.

When Dustin died, he saved the lives of three strangers. His pancreas and kidney went to a man in Las Vegas, his liver to a woman in California and his other kidney to a professor at Brigham Young University. Thomas and her family still keep in touch with the man from Las Vegas.

"It's given him a whole new outlook on life. He's now around to raise his three young kids," she said.

Thomas is confident that Dustin would have wanted it this way. He was the quintessential good Samaritan, going out of his way to help people whenever he could.

She recalled a time in 2002, when Dustin had tickets to the snowboarding qualifiers at the Salt Lake City Olympics and he decided to bring her.

After trudging her way up the hill -- Thomas mistakenly wore boots with no traction, and she kept sliding down -- she stopped for a moment and said something to Dustin. When she didn't get a response, Thomas looked around and saw that Dustin had left to help escort a pregnant woman.

"That's just the type of person Dustin was. If he saw a need, he was there to fulfill it," she said.

That attitude seems to be prevalent in Utah. According to Alex McDonald, the director of public education for IDS, the state has the highest consent rate for organ donation in the country.

To be an organ donor, a person must die under certain conditions. Of the 6,000 annual deaths in Utah, McDonald said about 85 percent usually meet those criteria -- and nearly 90 percent of those donate their organs.

Tragic irony

Thomas hasn't given a presentation since October, shortly before she was diagnosed with kidney failure.

The irony is not lost on her.

"Now I'm in the position where I need some help," she said. "I never thought I would be on the end of needing an organ."

She had been diagnosed many years earlier with diabetes and a kidney disorder called IgA nephropathy. Doctors even told her that she might one day need a transplant, but she always thought of that as a distant and remote possibility.

In order to get on the waiting list for kidneys or other organs, patients must go through an extensive battery of tests to make sure they are otherwise healthy. Thomas's tests are done, and the next step is a meeting with her doctors. Once she does that, her sister and two sons can get tested to see if they are a match for a kidney donation.

If none of them are a match, then Thomas will go on a waiting list for a cadaver donation. The wait can last as long as two years.

McDonald said there are about 275 people on organ waiting lists in Utah. Nationally, that number is about 95,000, and 17-20 people in the U.S. die each day with their names still on the list.

But Thomas is optimistic. It could be worse, she said.

She isn't stuck in a hospital, she can still work and she can even still travel for her job -- she opens fuel centers for Smith's Food and Drug across the country.

And she still hopes to one day go back to the classroom to inspire new generations of organ donors with the story of Dustin and the three lives he saved.

The cause

It was those three lives that initially inspired Thomas to action. Almost immediately after her son's death, she called IDS and asked if she could volunteer for the organization.

IDS makes people in Thomas' situation wait one year so they can get through the grieving process, but once that year was up, Thomas started her campaigning, speaking to high school classes nearly every week.

Thomas understands why IDS has a waiting period. The first time she gave a presentation there was no stopping her tears. It was hard for to speak about organ donation to kids who were barely younger than Dustin when he died.

Some of them even reminded her of Dustin.

"It was probably a good thing that I did wait for a year, because the first couple of times going out, talking to schools, was really, really, really hard," she said.

McDonald speaks highly of the work Thomas has done for IDS. She was always well received by the teachers and students, he said.

While IDS hopes for as many organ donors as it can get, McDonald said it doesn't push anything on people. At the presentations, he said, speakers never ask their audience to sign up for anything. They only ask them to take the information home and talk to their families.

"It helps families talking about donation," McDonald said. "One of the things that I've found ... is if you want families to talk about anything that is even somewhat controversial -- like donation, sex, drugs, smoking, -- parents aren't going to bring it up. Kids have to.

"It kind of forces that family discussion, which from our standpoint is really good."

Even if people decide they don't want to be organ donors, McDonald said it's important for loved ones to know what their wishes are.

Thomas inspired her share of people. She even runs into people on the street who recognize her from her presentations.

"The things that people were saying to me really made me feel good," she said. "They would come up and say, 'I'm sorry for your loss, but you know what? I'm going to go home and sign up to be a donor.'

"It was just kind of touching the way the kids reacted to it."

Perhaps next time, she can talk about the donor who saved her life as well.

Jeremy Duda can be reached at 344-2561 or jduda@heraldextra.com.

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