Dan Lietz thought he could handle the difficulties of taking on his fiancee’s job as a coordinator of the state’s organ and tissue donor registry, but it has proved harder than expected.
Memories of Vikki Tulcus — a longtime donor advocate who died earlier this year while waiting for a kidney — are everywhere, from the lipstick-stained coffee cup on her desk to the calls he gets from people who have been inspired by the 43-year-old woman over the years.
On Monday, Lietz was reminded once again of Tulcus as state officials launched a new advertising campaign in her memory. The commercial — timed to kick off National Donate Life Month — shows photos of Tulcus and a clip of her urging others to sign up for the state’s donor program.
The job “has its ups and downs, but it keeps her memory with me always,” said Lietz, 43. “When Vikki passed, it left a huge, gaping hole in my heart.”
Tulcus worked in the organ donation field for nearly 10 years, first with a nonprofit and later with the secretary of state’s office. In 2009, doctors diagnosed her with Wegener’s syndrome, a rare autoimmune disease that affects the lungs and kidneys.
She appeared in last year’s organ donor commercial, in which she talked about needing a transplant. But Tulcus died Jan. 9 before finding a match.
After her death, her corneas were donated to two women — one from Chicago and the other from New Jersey, Lietz said.
At a news conference, Secretary of State Jesse White said his office typically doesn’t feature the same person twice in the ads but felt that Tulcus’ “compelling story” warranted it. Every year, more than 300 people in Illinois die waiting for some kind of transplant and 5,000 are on the waiting list, he added.
“She didn’t get her gift when she was alive … but then, as she was she leaving, she made sure someone got a gift. I think that’s quite a story within itself,” White said.
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The commercial will appear on TV and radio spots in English and Spanish this month as well as on 650 movie screens across the state. Some stations may also play the clip as a public service announcement later in the year, state officials said.
The state is also stepping up its efforts to promote the organ and tissue donor program by establishing new partnerships with libraries, universities and community colleges and retraining clerks at state facilities, White said.
Since Tulcus died, her family has found notes tucked into notebooks and journals from people expressing their appreciation for the work she did, said her cousin, Sandi Skonieczny, 48.
They’ve also found letters of encouragement from transplant recipients and donor families as she battled the disease. Even as her health deteriorated, she put on a smile and believed she would get a transplant, relatives said.
Her fiance wants to continue Tulcus’ hard work. She would be happy to know that her corneas let two others see again, he said.
“She used to say this one thing … ‘God does not want your organs when you die; he only wants your soul,'” Lietz said. “I’ll always remember her for that.”
Twitter @jendelgado1