'There was nothing routine:' Watertown woman looks back on 40 years after UW Health's first pediatric liver transplant

 

WATERTOWN, Wis. (CBS 58) -- It's a beautiful sunny day in Watertown, Wisconsin, and Darcy Zietlow and her niece, Tanya Ulm, are surrounded by loved ones for a family reunion.

On the table beside them are dozens of photographs, newspaper clippings, and other mementos that date back to the 80s.

“This is the one!” Zietlow exclaims while rifling through a box. “Tanya, this was me before my braces.”

And while the saying goes that a picture is worth a thousand words, for these two, these memories are priceless.

“It means life for me,” Zietlow told CBS 58’s Ellie Nakamoto-White. “I’m very grateful for everything that has happened to me in my life, good or bad.”

But to get to the good, we have to start with the “bad” — and that means going back to March 1984.

Then, Zietlow was a 17-year-old star athlete, who had just helped win the state basketball tournament and was now focusing on volleyball.

Little did the teenager know, everything would change just five months later.

“I had gained close to 100 pounds in the summer from my liver not working and I was very sick,” Zietlow recalled.

That illness landed her in the pediatric unit at the University of Wisconsin Health Hospital in Madison.

“There was a lot of poking and prodding,” Zietlow said.

She was ultimately diagnosed with Wilson’s disease — a rare genetic disorder that blocks the body’s ability to metabolize copper.

“I was needing a liver transplant,” Zietlow said. “I didn’t understand the concept of a liver transplant, because I’d never heard of it.”

It was also an operation that, at the time, hadn’t yet been done at UW Health.

“When I had mine, there wasn’t anything, they were learning, and they told me that I was their Guinea pig and I was like hmm,” Zietlow said. “There was nothing routine about anything when I was there… they were learning every single day from me.”

But determined, Zietlow and her medical team pushed forward.

“The doctors at Madison talked whatever they had to talk to get the liver for me,” Zietlow said. “It saved my life."

After a tough nine-day stay in the intensive care unit, she would go on to become the system’s first successful pediatric liver transplant recipient, making front-page headlines across the country.

“I had to learn to walk again. I couldn’t lift my arms. I had tubes coming out of me everywhere, I’ll never forget, in one day I lost 17 pounds because there was so much fluid in me,” Zietlow remembered. "I am very thankful. I am very grateful. I live every day for today and I hope for tomorrow.”

An inspiring message for many — but especially for her niece.

“She truly does live for the day,” Ulm said. “It was huge to know that I had somebody to look up to who I’ve been close to my whole life.”

Just 20 years after her aunt’s procedure, Ulm would find herself in the same scary spot at the age of 16.

“I was told when we got walked into the hospital that day when we were in the transplant surgeon's office, like you need a transplant, you need it now,” Ulm said. “They admitted me that day and I didn’t leave the hospital for a couple weeks until after that.”

According to recent statistics, Wilson’s disease affects one in 30,000 people.

If left untreated, patients can suffer severe liver failure, which could lead to death.

“It must have been an amazing success back then,” said Dr. Dave Foley, who is the current surgical director of UW Health’s liver transplant program. “We did not really understand all of the physiology of what happens when someone undergoes liver transplantation, the complexity of the operation, the management of the clotting function of the new liver when it gets transplanted… back then, it was a true tour de force.”

Dr. Foley added that Zietlow’s success is a testament to how far technology in the field has come over the years.

"To see the impact that Darcy has had, not only in her personal career but also in the community and advocating for liver transplantation, it's just an amazing story,” Dr. Foley said. “The number of patients dying on the wait list is significantly dropping because of changes in organ allocation and also the way we can do more liver transplants through improved perfusion and preservation strategies. So, keep the hope, keep the faith.”

In 1984, Zietlow was Patient Zero. In 2005, Ulm was Patient 1,377.

“We’ve always been close, but I think going through situations like this, like it’s something that nobody else really understands, and having that in her has been such a comfort and a blessing in my life,” Ulm said.

Now decades later, these survivors are once again re-living their journeys — not from a hospital bed, but from Darcy’s home she shares with her husband, Mark, and her children.

“Just feeling so immensely grateful for that gift of life from somebody who gave that so you could live,” Ulm said. “You’ve gotta fight for that blessing that you’ve been given to continue living your life.”

The two, bonded not only by blood but by strength and hope.

“You have to want it,” Zietlow said. "You have to want to live.”