Ankeny, Iowa

Kiersten Mann has an optimistic and energetic spirit. She’s been a source of positivity not only for her loved ones but also for herself through some truly trying times.

When Kiersten was 3 years old, her babysitter noticed she was crawling up the stairs instead of walking. The Manns looked to local doctors for answers.

“They didn’t know what was wrong at first,” says her father, Jim. “It took a couple of months to figure out what was going on.”

Kiersten was referred to University of Iowa Stead Family Children’s Hospital, where she met with pediatric neurologist Katherine Mathews, MD. Tests revealed she has limb-girdle muscular dystrophy (LGMD), a genetic disorder that impacts the body’s ability to produce a protein that builds muscle.

“Over time, we’re going to see her lose muscle strength,” says Jim.

LGMD affects Kiersten’s ability to walk and the mobility of her elbows and ankles. She undergoes regular physical therapy to combat the effects of her condition.

In 2016, Kiersten began feeling exhausted and experiencing flu-like symptoms.

“At first, it felt like a cold, and then it got worse,” says Kiersten. “I would start throwing up, getting fevers, and feeling lightheaded and dizzy.”

Kiersten saw a cardiologist in Des Moines, who immediately sent her to UI Stead Family Children’s Hospital by ambulance. Pediatric cardiology specialists quickly diagnosed Kiersten with heart failure and placed her on the heart transplant list. She underwent her first surgery to place an implantable cardioverter-defibrillator (ICD) to support her heart function in the meantime.

“Her heart wasn’t contracting and expanding properly, so it wasn’t pumping enough oxygen in her blood,” explains Jim. “At that time, her heart was only functioning at about 25 to 35 percent.”

“When she was first diagnosed with limb-girdle muscular dystrophy, we were talking to Dr. Mathews and the potential for heart issues was discussed because your heart is a large muscle and LGMD can affect it,” adds Jim. “The anticipation was that probably wouldn’t happen until her 20s or 30s.”

During this time, Kiersten’s mother was battling cancer. Unfortunately, her mother passed away, and in March 2017, Kiersten’s heart condition worsened.

“Kiersten started to get sick again, and we ended up coming back to Iowa City,” says Jim. “Her heart function had dropped to about 10 to 15 percent.”

Kiersten immediately had her first open heart surgery to implant a left ventricular heart device to help the heart pump blood.

In February 2018, Jim received a call that a heart had been found for Kiersten. She underwent a 15-hour heart transplant surgery and was back home just 10 days later.

“It took a while to get my energy level back, but I felt pretty normal after a while,” says Kiersten.

Today, Kiersten is continuing to heal and improve. Her family is grateful for the care she’s received from her team of pediatric specialists. 

“We’re fortunate in Iowa to have one of the best children’s hospitals in the country,” says Jim. “Having access to those specialty people who are really talented and skilled at dealing with kids is very important.”

Through it all, Kiersten’s resilience has inspired those around her.

“She was very strong,” says Jim. “The perseverance she has, the positive attitude, and the fact she always looks for the best in situations has taught me a lot.”

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