Rochesterite represents city at Rose Parade

As a former resident of Iowa City, Steve Shank grew up watching the Rose Bowl.

"We always had a big party," he said. "You hung out all day, watched the parade, ate, then watched the game."

Just two years after a double lung transplant saved his life, the Rochester resident will represent Mayo Clinic in the 2019 Donate Life float in the Rose Parade.

He’ll be one of seven organ recipients walking by or riding in the Jan. 1 parade float in Pasadena, Calif.

"I think it’s going to be amazing to see how big they are in person," Shank said of the flowery floats. "I think they’re probably three times the size you’d think."

Shank’s goal post-transplant has been to raise awareness for organ donation and his own rare genetic disease. So applying for the Rose Parade was just one more step toward that.

Two years back

Shank, 43, has Hermansky-Pudlak syndrome, which manifested itself as albinism and legal blindness earlier in his life. However, at age 40, he started to have trouble breathing.

Shank, accustomed to biking 100-mile events, discovered his disease had started to damage his lungs.

His lungs deteriorated quickly. In 2016, Shank spent 79 days in the hospital. He needed an artificial lung for 35 of those, before a double-lung transplant became available.

"I don’t think you really understand the need until you go through something like that," Shank said. "There’s an overwhelming number of people who go on the list … and the organs aren’t there to support the need yet."

Caren Shank, 39, remembers a stunningly quick health decline in her husband, followed by a "miraculous" recovery after Tommy Frankel, a Rochester native, became the family’s "hero."

That’s not to say organ donation got Steve out of hospitals for good. He is currently immuno-compromised and has other health concerns. But he’s alive.

"You have a bag of problems right now that I can’t treat," Steve Shank remembers his doctor saying. "You’re going to die. Once you have your new lungs, you’re still going to have a bag of problems, but they’re ones I can treat.

"I’ll take those setbacks," he continued, "for waking up and seeing everybody and having another day."

Next steps

The couple speak at organ donation fundraisers and also visit drivers ed courses to educate children "before they make this adult decision," Caren Shank said.

About 60 percent of Minnesota’s driving-age population have registered to donate, she said. That’s a high number compared to other states, but not as high as it could be.

"We dispel some of the myths around organ donation and share some statistics," Caren Shank said. "Like the fact that 22 people die every day waiting for organs."

Steve Shank will also probably go on the list for a new kidney in the next year. The drug regimen he takes to keep his body from rejecting his lungs has damaged his kidneys enough that he’ll begin looking for a living donor — a relatively safe procedure with a high success rate, which could shave years off his wait time.

For now, though, they’re concentrating on the Rose Bowl trip.

Caren Shank is excited for their children, who will "not only be there, but be part of it."

That’s probably not the most exciting aspect of the trip for the Shank children, though.

The family was to fly out Christmas Day to take their children to Disney World, and they didn’t tell Ani, 9, or Elliott, 6, until Christmas Eve.