Oragan Donation
It's About Life
y Michelle McNeal

“Nick was a good kid,” says his mother, Sue Volk. “He liked to have a good time and he liked a good joke as well as anyone; he was no angel by any means but he was a good kid and everyone liked him.”

Just after her son’s death, Volk was asked if she wanted to donate Nick’s organs. The answer, for her, was an easy one. “Since Nick was just 16 it hadn’t been that long since I went with him to get his driver’s license. That’s one of the questions they asked him and his attitude was, ‘well of course, why not,’” says Volk. “It was easy to say yes because I knew that’s what he wanted to do.”

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Laurie Vial and Jeff Reeves discuss their common bond of organ donation. Vial’s family donated her father’s organs after his death seven years ago. Reeves’ life was saved in 1994 when he received a donated liver. Both are very supportive of Illinois’ organ donation program.

 Dave Bosch, Communications Director from Gift of Hope Organ and Tissue Donor Network, an organ procurement organization serving much of central and northern Illinois, says, “Our main education message is to get people to talk about donation with their families - to talk about what they would want. People just don’t talk about death and dying and end of life decisions. But organ donation is about life, it’s not about death.”

Volk’s decision allowed more than 50 different organs and tissues to be donated from her son. She now encourages others to speak freely about organ donation and to learn about their loved one’s wishes, providing information and support each year through Nick’s Race (see information on page 13).

Laurie Vial, Marketing and Member Relations Coordinator for Corn Belt Energy in Bloomington, also knew what her father wanted when he passed away seven years ago. Richard Vial had a heart attack while cross-country skiing with his son at the family farm on a bitterly cold January morning. “My entire family had always been really big on organ donation and my dad had a signed card in his wallet,” says Vial.

Because Richard hadn’t been on life support, the family was only able to donate his tissues. “My mom told them she wanted them to use as much as they could that would benefit other people,” says Laurie. The family received a letter from the organ procurement agency saying that they had used her dad’s skin to protect burn victims until their own skin grew, his major joints for an arthritis study and his bones for bone grafts.

And one woman received his corneas. “She wrote this letter, which was forwarded to my mother. She doesn’t know my dad’s name or anything. So she’s writing a person she never met, who gave her this gift. She said she hadn’t been able to see for many, many years and that she received the corneas and is now able to see. She told us what a tremendous gift it was and how grateful she was,” says Vial. It’s hard to say how many lives were improved by the donations.

Bosch says that tens of thousands of people benefit each year from tissue transplantation. Tissues include the corneas, veins, bone, bone marrow and skin that are used for a large number of procedures.

“There are eight organs available for transplant, as well as the different tissues, and it’s easily more than 25 people whose lives can be saved or enhanced by a single donor,” says Bosch. In Illinois alone, there are presently 4,700 people waiting for an organ transplant.

Jeff Reeves, President/CEO of Corn Belt Energy, was one of those people in 1994 as he waited for a liver transplant. He was diagnosed with cancer in July of that year. “The plan was to send me to the Mayo Clinic and the surgeons up there would remove the cancer and stitch me up and then I would go on my merry way, maybe with radiation or chemotherapy, but the prognosis was good,” says Reeves.

But five days after his arrival at the clinic, Reeves learned that the cancer in his bile duct was too close to the liver and surgery wasn’t an option. “They basically told me there was nothing they could do.”

A few days later, the attending doctor came in and asked Reeves if he would consider having a liver transplant. Reeves remembers, “He said, ‘I must warn you that we stopped doing liver transplants with this type of cancer because we had no survivors.’” But a new protocol had been successful in two cases, performed within that year. “It was my only option and for a while I didn’t know I had that option,” says Reeves. “They said I had to agree that I wouldn’t smoke or drink in the future but I said that wasn’t a hard thing to agree to.”

After extensive testing, doctors determined that Reeves’ cancer was isolated and he was otherwise in excellent health, making him a candidate for a transplant. He was in and out of the hospital for four months before he received a new liver on Thanksgiving Day 1994. “I started feeling better after I regained consciousness and was aware of what was going on. I didn’t have nausea and started feeling better immediately. That just showed how much better the new liver worked compared to the old situation,” he says.

Just before Christmas that year, Reeves came home, and has stayed healthy now for 12 years. “I’ve been very fortunate, very blessed. A lot of prayers were answered and family and friends were all very supportive, especially my friends in the electric cooperative program,” he says.

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Secretary of State Jesse White encourages organ donation. Here, he talks to students participating in the Electric and Telephone Cooperative’s Youth Day about the importance of becoming a registered donor and speaking with their families about their decision.

Reeves enjoys talking about his experience because he’s eager to get the word out. “I want people to consider being a donor. That’s the most important thing. Just one donor can save a lot of lives,” he says.

“Now four months is not anywhere near what you have to wait for a transplant, if you get one at all. There are so many people on the list,” Reeves comments. More than 300 people in Illinois die each year while waiting for an organ.

“The Illinois Secretary of State’s office has done a good job of making everyone aware of the need for organs. You can’t do much with them when you die anyway, so you might as well let someone else have them,” says Reeves.

Randy Nehrt, Spokesperson for the Secretary of State, says, “We spend a lot of resources in Illinois to educate the public on this issue and it’s an important issue for Secretary of State Jesse White. It’s one of the top issues he speaks about. It’s a personal issue for him as well, as his sister received a second chance through a donated kidney.”

The office’s work has paid off. Illinois has the largest donor registry in the country, with more than 6 million registered donors. The Secretary of State’s office controls and provides the list of registered donors in Illinois to the state’s organ procurement agencies Gift of Hope and Mid America Transplant Services.

Most registered donors in Illinois have registered when renewing or receiving their driver’s license. In the past, persons were asked if they wished to join and their names were added to the registry. They were then asked to sign the back of their driver’s license and to tell their family. But when a person in this registry dies, the family still has the final decision. “It’s just a very difficult time for a family to make an important decision like that,” says Nehrt.

Bosch says it’s hard for people to think about what their loved one would have wanted when they are in shock and dealing with their grief. And about 19 percent of families have said no when asked whether they agree to donate a loved one’s organs, even when that loved one has a signed driver’s license and has joined the registry. “The reason they were saying no was because they said, ‘we hadn’t talked about it’ and ‘I don’t know’ and ‘I can’t figure that out right now,’” says Bosch.

That’s why the registry has now changed to first person consent, which could save 100 more lives each year. The new registry is a contract and legally binding. If you sign up on this registry, your wishes cannot be overturned and your family won’t have to make a decision at a very upsetting time. Families will still need to give consent for the donation of organs of persons under the age of 18.

See the information on page 13 to learn how to join the new registry. “There is truly one thing you can do that will directly save lives and that is to join the first person consent registry. By doing that you may give someone a second chance at life. It’s a wonderful gift that you can give,” says Nehrt.

Nick Volk and Richard Vial gave that gift, improving the lives of many individuals with their donations. At a very difficult time, their families made the decision to honor their wishes, and should be commended for doing so. Don’t wait - talk to your family today about your decision regarding organ donation.

Living Donation

Organ donation doesn’t have to occur only after a donor dies. Randy Mead, Control Room Operator for Southern Illinois Power Cooperative in Marion, knew that his son, Gabe, who was born with a defective kidney, would someday need a transplant. In January 2001, when Gabe was 18, the defective kidney finally gave up and Randy was approved as a donor.

Randy considered himself an obvious choice since he was the oldest of his family. “Doctors said at the time that he would possibly need another organ in his lifetime. I told my wife that since I was the oldest I would try to donate now and if he needed another organ later, maybe she or a sibling could donate,” says Randy.

“It wasn’t a big decision for me. I’m glad I did it. I’m just fortunate that I could do it, that’s the thing,” says Randy. “I thought just anyone could donate, but it doesn’t work that way. I was really surprised at what all the doctors tested me for.”

Randy and Gabe both came through the transplant surgeries very well. Gabe, now 23, has been married for two years and is living a normal life. “He has to take rejection medicine, but he does whatever he wants to do. It doesn’t seem to affect him at all,” says Randy.

Kidney donation is the most common type of living donation. Portions of a liver, lung or pancreas, or bone marrow can also be transplanted from a living donor. Most often, this type of donation occurs between family members or friends.

“The people I really admire are those who do this for friends or total strangers. There are a lot of good people out there, that’s for sure. No matter what, the operation will probably always affect you a little bit. I can do what I did before, but I know it’s there and so someone who does that for a stranger to me is pretty special,” says Randy.
Nick’s Race: Helping to spread the word

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Vikki Tulcus from Gift of Hope gives information on organ donation to Nick’s Race participant Laura Pitcher.

When Nick Volk died, his older sister wanted to do something as a tribute to him. As an event planner, she decided to use the biggest thing she and Nick had in common—running—and make it an event. Nick’s Race was the result, a 2-mile run and walk through Sam Parr State Park in Newton. “It’s not just about Nick,” says his mother, Sue Volk. “We’re really rural, but we have a lot of people who are organ and tissue donor or recipient families.”

The race’s mission is to spread the word about organ donation and the importance of discussing your decision with your family. More than 200 participants registered for the run and walk last year. And many more people come to hear the speakers and provide support. Speakers have included donor and recipient families and representatives from Gift of Hope. Many local businesses and organizations, along with people touched by organ donation, donate prizes for a large raffle.

In its four-year history, the race has raised more than $36,000 for Gift of Hope, the Nick Volk Memorial Scholarship Fund and the Newton Community High School Cross Country Team and Drumline. Gift of Hope has used the money received from the race for educational programs and materials; the scholarship fund has awarded four $1,000 scholarships; and the cross-country team and drumline have bought needed items.

This year’s race is scheduled for June 23, 2007.

For more information, contact: Sue Volk at svolk@psbnewton.com
or by phone at 618-783-8655.

How to become a registered donor

1. Visit www.giftofhope.org or call 888-307-3668 with any questions you have.

2. Join the first-person registry in one of these ways:
• Visit www.lifegoeson.com or www.giftofhope.org
• Call the Secretary of State Organ/Tissue Donor Program at 800-210-2106
• Visit any Illinois Driver Services facility

3. Talk to your family about your decision.