Crestwood family takes over organ donation cause after death

When Dan Lietz and Vikki Tulcus met at Benedictine University in Lisle in 1987, he had no idea that more than 20 years later, after marrying, raising three children and building a successful banking career, Tulcus’ passion for advocating for organ donation would change the trajectory of his life.

Tulcus dedicated her career to helping families make the decision to become organ donors, first at Gift of Hope, an Illinois-based organ procurement organization, and later as the Chicago regional coordinator for the Illinois secretary of state’s organ donor registry.

After Tulcus died in 2013 from a rare autoimmune disease that affected her heart and led to kidney failure, Lietz was offered her position with the secretary of state and continued her advocacy for the organ donor registry.

“My first day on the job, they gave me Vikki’s office,” Lietz said. “I sat down at the desk that still had a photo of us, a calendar set at the last day she worked, even a coffee cup with her lipstick still on it. The same phone that I called her daily. Ironically, it’s still my office phone today.”

When Tulcus and Lietz reconnected in 2010, she was in the hospital and had joined the organ donor waiting list.

“Not dating for years and meeting someone who was sick made me very nervous, but when I met her, I was blown away,” Lietz said.

The couple planned to marry after her transplant, but Tulcus’ O positive blood type, along with several specific blood antigens, posed a significant challenge. Lietz explained the odds of finding a suitable match were very low, as a potential donor would need to match both her blood type and all 13 antigens.

While Tulcus never received a kidney transplant before her death, she was able to donate both of her corneas, which went to recipients in Chicago and New Jersey, Lietz said.

Lietz said others like Tulcus face a similar battle.

More than 4,000 Illinois residents are on the transplant waiting list, according to data from the U.S. Department of Health and Human Services. Nationally, more than 100,000 people are waiting for organ donations, and an estimated 17 people die each day while waiting for a transplant in the U.S., according to the most recent data from March.

In Illinois, 7.3 million people are registered organ donors, which is more than half of the state’s population, according to the Illinois secretary of state’s office.

But that number could be higher, Lietz said.

Since Illinois passed the Drive for Life act in 2018 that allows 16- and 17-year-olds to join the organ donor registry, Lietz has advocated for education on donor registration in schools.

In January, as program manager for the secretary of state’s organ donor registry, Lietz helped launch the Lifesaving Education and Awareness on Donation program, which enables high school students to serve as ambassadors for the Illinois Organ and Tissue Donor Program.

His daughter, Morgan Lietz, a senior at Shepard High School in Palos Heights, has followed in her father’s footsteps as an advocate for the program at her school and through working donor registration tables at several events, she said.

Morgan has participated in organ donor events with her father since she was 6. As part of her service requirements for Shepard’s National Honor Society, she continues to advocate for the importance of organ and tissue donation.

Students who participate in the program can receive community service credit. They just need to get a faculty member to serve as the program adviser and collaborate with the regional program coordinator from the secretary of state’s office, who will offer virtual training materials, answer questions and provide guidance, according to a news release when the program launched this fall.

Recently, Morgan spoke at the launch of the Lifesaving Education and Awareness on Donation campaign at Walter Payton College Prep High School in Chicago.

“I was super nervous, because speaking in front of people is just not my thing,” she said. “But then I thought to myself, these kids really need to learn about this stuff, because it could save lives. And how cool would it be that I got to inform them and then they could pass it on. So as I went on to my speech, I gained more confidence, and at that point, I was just talking to the kids.”

Since the program started, Dan Lietz said it has reached 80 schools throughout Illinois. Eventually, Lietz said he hopes the program will expand to reach the more than 720 high schools in Illinois.

“As of today, 359,000 16- and 17-year-olds have said yes at the DMV. That counts for about 22% of all people that go to the DMV and say yes to donation,” he said.

In Morgan’s experience, she found speaking to her peers is more effective in encouraging donor registration because they are more likely to connect with someone their own age.

“I feel like they’re less afraid to talk to me,” she said. “I share similar experiences with them. So I do get a lot more questions than I think that (my dad) would have, because they’re a little shy in the classrooms, but when they see someone that’s similar to them, they’ll be more likely to respond.”

Dan Lietz hopes that with the program, when a student passes their driver’s education test and goes to to get their license, they won’t have to turn to their parents and ask, “What do I do?” when asked about becoming an organ donor.

“I want them to be educated enough to remember, say, ‘hey, remember that girl who came in into my classroom that went to school with me, and she talked about her mom passing away, and that no one should have to go through that.’ That’s what I want them to remember,” he said. “I don’t want their parents making that decision.”

When Tulcus died, Lietz knew his response when hospital staff asked if she was a donor.

Through his work with the organ donor registry, Lietz hopes others won’t face that decision in the hospital because their loved ones would have already made their wishes known by checking the box.

“A family member is going to be asked that question probably on one of their their worst days of their lives. That’s a difficult choice right there. I don’t know if I can make that choice, but if that box was checked, I know that that person went into the DMV, was asked that question and said yes.”

smoilanen@chicagotribune.com