By William Smith
Katie Nack was born with a spongy heart.
For most of her life, that defective heart was slowly killing her.
Two years ago, Nack was given a second chance at life with a heart transplant. The road to get there, though, was nearly impassable.
When doctors first told Nack she had a spongy heart, she didn’t understand. The doctors didn’t fully understand it either. Nack was only one of six people who had received the diagnosis.
“They didn’t realize I had it until I was three-and-a-half. I passed out in the bathtub when it was bath time. My mom turned around, and I was passed out face-first in the water,” Nack said.
An X-ray technician noticed her odd, spongy heart. Nack might not be around to tell her story if he hadn’t.
“My heart was pressing on my sternum and causing me pain, but I couldn’t explain that, because I was three-and-a-half,” Nack said.
A normal heart is stretchy, like a pair of pantyhose. Nack’s heart had a texture more like leather, and anytime she took a deep breath, that material hardened permanently.
“They said I had three years to live,” Nack said.
Nack’s first memories were formed about a year later in the hospital, where hospitalization was a near-constant state of being.
“My first memory is waking up in the hospital room from one of my procedures. I remember waking up from the grogginess and a nice nurse coming and being like, ‘Oh, we’re gonna bring your parents back,” she said.
It could have been depressing if those around Knack had allowed it. Instead, they filled her days with comic books and video games, and she harbors a fondness for that period of her life.
“I got a Make-A-Wish out of it,” Nack said with a laugh.
Nack’s request was a little unusual. She wanted to meet the Beast from the classic animated Disney film “Beauty and the Beast.”
Most little girls were only interested in meeting Belle — the Beast’s romantic interest.
“They brought Belle in first, and I wasn’t having it. I wanted to meet Beast!” Nack said, who is now unsure why she was so adamant about it.
Beast was next to enter the room, and the meeting impacted the actor portraying Beast more than Nack herself.
“He was crying and had to go compose himself. My mom told me he was crying because no kids ever want to see Beast,” she said.
Until two years ago —when she was 29 years old — Nack had no idea what life was supposed to feel like. She only knew what it was like with an extreme heart condition that required constant medication.
“At the age of 12, I got along really well with 45-year-old men and up because they’d be behind me at the pharmacy. They’d be complaining about their ACE inhibitor, their beta blocker, and I’d be like, ‘Oh, you’re on metoprolol too? I’d be like, yeah, I’m at 50 milligrams.’ They’re like, ‘I can’t even do 12.5 grams.’ So I’d be making friends with all these older gents. It was great.” Nack said with a laugh.
A Wisconsin native who moved to Burlington four years ago, Nack’s sunny disposition helped her turn rotten lemons into beloved childhood memories.
But she was always so tired. By the time she was in high school, Nack had a pacemaker wired to her heart. Installing it was just one of several surgeries and procedures she endured.
“From like third grade on, I was tired all the time,” Nack said. “Back then, I thought it was normal for people to start losing their sight after walking a little bit.”
Nack survived the pressures of societal norms by finding constant excuses to rest.
Whenever her vision started to dim, she would stop to tie an already-tied shoe or stop by a friend’s locker, pretending she needed something.
If she kept walking, she would eventually pass out.
That ruled out every sport. Thankfully, her father was a video game developer for Raven Software, leaving Nack no shortage of stationary entertainment. Mainly video games and other forms of nerdy goodness.
“That was a new outlet for. I got very into Dungeons and Dragons, and then video games,” she said. “It was an escape hatch for me.”
Nack opened that escape hatch again while recovering from her heart transplant two years ago. And she’s still playing.
“My dad bought a PlayStation 5 for me,” she said.
Despite walking on eggshells that could shatter her heart, Nack never shied away from life. She met her husband Des Moines County Naturalist Marcus Nack while they were in college.
After that, she taught special education in Stevens Point, Wis., for a number of years. These days, she teaches at Southeastern Community College.
“I taught emotionally behavioral disabled students, but it became a catch-all for any students who needed to be in one location throughout their day. I worked with a lot of students with trauma, lots of students that were coming out of being incarcerated, and needed just to have a step program,” Nack said.
Nack loved her job but had begun to doubt herself. Since her condition wasn’t visible to the naked eye, everyone told her she looked great. Meanwhile, her doctor was telling her that she was the sickest patient he had.
With no comparison to how a healthy adult feels, Nack worried she might have a mental condition. She was concerned she was making it all up – lying to herself and everyone she knew.
“I kept just being, like, ‘What’s wrong with me? It’s all in my head. I gotta be stronger, I gotta’ be tougher,’ ” she said.
Nack could never shake that feeling of being an impostor. Not until the moment she awoke from her transplant surgery.
Nack didn’t feel pain, despite surgeons cracking her chest open hours earlier. She felt relief. The elephant on her chest was gone.
“I was like, ‘Oh my God, I wasn’t crazy. I had a non-working heart. The first thing I said was, ‘I feel so much better,” Nack said.
Two years prior, when the COVID-19 pandemic swept across the country in 2020, Katie and her husband Marcus feared she wouldn’t live long enough to get a transplant.
“The doctors kept telling me, don’t get COVID,” Nack said.
Katie contracted COVID-19 shortly after those warnings. Considering her heart condition, she feared it was a death sentence. Marcus took care of her the entire time.
“I’ve only seen him cry a few times. When I was diagnosed with COVID, he started crying,” Katie said.
Nack had just moved to Burlington and jokes that she still gets lost because she spent the first two years isolated at home.
Another heart health scare nearly disrupted her marriage to Marcus in 2022, and doctors told her it was finally time to get a heart transplant. She considers herself lucky. Nack only had to wait two months for a donor — a 19-year-old man.
Nack didn’t realize how much simpler life — the more basic parts of it — is supposed to be. Before the heart transplant, she couldn’t walk the aisles of a grocery store, cook a meal, or eat it. She had to do one or the other.
“I would fall asleep before I could eat it,” she said.
Now, Nack is reaching beyond the simple pleasures she missed out on. She wants to run a 5K within the next year and is already training. She was walking (with help) 12 hours after her surgery.
At 31 years old, Nack is practically starting her life over again.
“It’s just crazy, the amount of energy I have,” she said.