MARION — Since acquiring her new kidney 12 years ago, Carrie Conley is more active than she's ever been.

The 70-year-old swims, walks and makes frequent visits to The Hub Recreation Center in Marion and has won several awards in her age category in the US Transplant Games athletic competitions for organ donors, transplant recipients and their families.

"It changed my life," Conley said of the kidney. "After I received it, I wanted to stay as healthy as I possibly could."

Before she became an organ donation recipient, Conley was among the Southern Illinois residents whose names were placed on waiting lists for organs, placed there while they waited for some sort of healthy organ to help them live or improve their quality of their life. People are placed on the waiting lists by their physicians.

Through November 2015 — a full tally is not in yet for all of 2015 — the number of organs transplanted in this state, on average, was the lowest it has been in more than 15 years. As of November 30, 2015, 897 organs had been transplanted, for an average of 81 organs per month.

Conley was on the waiting list for 2 1/2 years before she received a donor kidney from a 47-year-old Springfield, Missouri, woman who died from a brain aneurysm. Her own kidneys were being wrecked by polycystic kidney disease, a genetic condition that has affected others in her family. In what are called living donations, two of her cousins received a donated kidney from their spouses, and her brother, a kidney from one of his co-workers.

Since receiving her kidney, she has joined efforts trying to increase the number of people who sign up to be organ donors when they get or renew their Illinois driver licenses.

Unfortunately, more viable donations often come from people who were otherwise healthy, but who died unexpectedly and suddenly.

The wait

As of Thursday, 121,421 people were waiting for an organ transplant, according to the United Network for Organ Sharing. About 4.2 percent — 5,090 people — are on waiting lists in Illinois. Almost half of those waiting in Illinois are African-American — 1,981 — and almost as many are white — 1,826.

Blacks are almost 15 percent of the state's population of 12.8 million, but are almost half of the people awaiting organs. Organ donor representatives make targeted appeals to various ethnic donors, such as through National Minority Donor Awareness Week, observed the first week in August.

"Best matches and outcomes for kidney transplants occur when the donor and patient are from the same racial/ethnic background," notes data from Illinois's Life Goes On website, citing the U.S. Department of Health and Human Services Office of Minority Awareness for 2011.

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Secretary of State registers organ donors at SIU

During the academic year, Illinois Secretary of State representatives register prospective organ donors during a visit to Southern Illinois University.

This past year, through November 2015, some 13,710 people had donated organs for 28,213 transplants, UNOS reported. One person can donate a single organ or two, or up to as many as seven. People may also donate tissue, which includes bones, heart valves, tendons and ligaments and skin, essential for grafts that help burn victims heal.

The vast majority of the 5,090 on Illinois's waiting list are seeking kidneys.

In the past 20 years, more than half a million organs have been donated for transplants, and the overwhelming majority have been kidneys, with 384,691 having been donated in that time.

In Illinois, people can indicate their desire to be an organ donor when they register for or renew their driver license or ID card, or they can register online with the Secretary of State through lifegoeson.com. On Jan. 1, 2006, Illinois became a first-person consent state, meaning that procurement agencies did not need family members' consent from anyone who had signed up to be a donor and was at least 18 at the time of their death.

While procurement agencies have the right to secure those organs, Tammy McLane, a communications director with Mid-America Transplant in St. Louis, said representatives still need to talk to the donor's survivors to help determine a medical social history to ensure organs and tissues being procured are healthy and viable for prospective recipients.

Illinois is assigned two federally designated organ and tissue procurement agencies: Mid-America Transplant, which covers 28 counties in the lower third of the state, and Gift of Hope, which covers the top two-thirds of the state.

People on organ waiting lists in Southern Illinois typically have transplant surgeries at one of four transplant centers in St. Louis: Barnes-Jewish Hospital, where Conley received her transplant; Saint Louis University Hospital; St. Louis Children's Hospital; and SSM Health Cardinal Glennon Children's Medical Center.

In fact, 2015 saw the highest number of organ donors and procured organs and tissues in 40 years at Mid-America Transplant, McLane said.

This past year, 190 deceased donors contributed 618 organs and 1,500 tissue donations, she said. Before 2015's procurements, the highest number of organ donations, from deceased people, was 557, she said.

"That's a big deal," she said of that jump in donations.

"We just see the community continuing to grow in their generosity," McLane said. "It really is life-saving."

Getting the word out

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SOS driver license and organ donor registration team visiting at SIU

Brian Bush (in the front, second from left) is the community outreach coordinator for the state’s Organ/Tissue Donor Program; here, he is pictured with other SOS representatives who visited SIU monthly during the academic year to register drivers and sign up thsoe interested in becoming organ donors.

During the academic year, Illinois Secretary of State representatives visit the Southern Illinois University campus, where, once a month, they register people to drive or renew a license or sign up those wanting to be organ donors. 

This past Tuesday, Secretary of State representatives registered another 40 people for the organ donor registry.

A week ago Friday, they were invited to educate the public and sign up potential organ donors in the third annual Donate Life Night, organized by Julie Beck director of operations for SIU's women's basketball team. Sharon Clark, a local performer who has received a heart transplant, performed at the event, according to Brian Bush, community outreach coordinator for the state's Organ/Tissue Donor Program.

Staff also plan to recruit at events like Organ Donor Night, this year planned for sometime in May Rent One Park in Marion, and make presentations to community and civic groups and churches, Bush said.

Each day, about 79 people across the nation receive organ transplants, according to organdonor.gov. At the same time, though, 22 other people die while waiting for an organ, that site reports.

That wait is immense, Conley noted, tears forming in other eyes.

Living donations, if possible, she noted, work best. Conley had been on dialysis treatments for about two months when she got the call about her kidney donor. She noted that so many people take dialysis treatments because there aren't enough donated kidneys.

"It was one of the lowest points in my life," she said. "The days were very long."

"The wait is very difficult because you know how much your life can change for the better," said Conley, who has a 36-year-old daughter and an 8-month-old granddaughter. "Your life is kind of … you're on hold, like my husband just said. It can change your life once it happens." 

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Stephanie Esters is a reporter covering Murphysboro and Perry County.

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