A teenager’s desperate plea: “Please don’t give up”

Patient Stories |

02/17/2022

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A Carmel High School swimmer was grieving the loss of her passion until a Riley team corrected the heart condition that threatened to keep her out of the pool.

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

Addyson Czarnecki’s favorite place in the world is in the water. Swimming pool, open water – doesn’t matter – she loves to swim. You could even say she lives to swim.

So when her heart started racing last year during practice and swim meets at Carmel High School, the freshman transplant from Georgia tried to brush it off at first. She was an athlete; her heart was doing its thing.

Until it began to slow her times and steal her joy.

“I was starting to fall out of love with swimming,” Addy said. “It got to the point where I was dreading going to practice every day because I knew I was going to feel the episodes, and they did not feel good.”

The episodes she refers to have a name – SVT or supraventricular tachycardia – the sudden onset of an abnormally fast or erratic heartbeat.

While it’s not common, according to Dr. Mark Ayers, pediatric cardiologist at Riley Hospital for Children, it’s more common than people think. About one in every 750 children has it, he said.

“The good thing is that it’s not typically life-threatening, but it does cause the heart to pump less efficiently while it’s beating so fast, and it can be really distressing for the patients,” Dr. Ayers said.

Symptoms can include dizziness, weakness, shortness of breath and chest pain. Most episodes last a few minutes, but they can be prolonged to the point that medication must be given to basically reset the heart’s rhythm.

LISTEN TO PATIENTS

Addy began feeling some of these symptoms earlier last year – fatigue, chest pain and a decline in endurance while swimming. It began to nibble away at the top-ranked swimmer’s times in the pool.

Abby preparing for a Carmel swim meet

At first, her parents thought it was related to the chlorine-induced asthma she has been treated for by Riley pulmonologist Dr. Nadia Krupp. But a visit to Dr. Krupp last fall ruled that out, said Addy’s mom, Amy.

“Dr. Krupp said her asthma is well-controlled, but she did not like the episodes of arrythmia and immediately referred us to cardiology, where we saw Dana Hartman,” Amy Czarnecki said.

Hartman, a pediatric nurse practitioner with the cardiology group at Riley, vowed to get to the bottom of Addy’s problem, sensing how desperate she was to get back in the pool.

“When I saw her in clinic, she had been having these fast heartbeats when she was swimming and it made her feel awful,” Hartman said. “Swimming is her favorite thing in the entire world.”

It would have been easy perhaps to dismiss Addy’s symptoms at first, blaming them on the anxiety and stress that comes with being a high-achieving teenage athlete. That can happen all too often for female patients in general, Hartman said, when providers don’t take the time to really listen to their patient.

A DIFFERENT KID

“Obviously, this was really bothering her, keeping her from doing what she loves, which is always my gauge for how aggressive to treat it,” Hartman said.

SVT is not fatal, but rather more frustrating for those who have it, and it can have a negative effect on quality of life, she added. She often sees kids referred to cardiology for dizziness or a fast heartbeat – and they are checked out to make sure they are OK – but it’s not stressing them out or keeping them from doing the things they want to do, she said.

“But for Addy, this was just devastating. Mom said it’s like she was a different kid – depressed, anxious and stressed,” Hartman said.

The nurse practitioner suspected it might be SVT but wanted to prove it by catching it when it happened in the pool. They tried to do that with help from a water-resistant monitor that Addy wore while swimming, but the monitor kept shorting out.

They tried to re-create it on the treadmill, and Addy felt a little crummy, but it wasn’t the same. For Addy, time was of the essence. She was desperate to salvage what remained of her swim season with the top-ranked Carmel girls swim team.

Meanwhile, Addy’s mom was relieved to see that the Riley team was truly listening to her daughter.

“Dana heard Addy’s concerns and said we are going to figure this out. We respected that,” Czarnecki said. “She saw that my daughter lives to swim, and this was affecting the thing she loved most in life.”

“WHAT IF THEY CAN’T FIX IT”

Hartman conferred with Dr. Ayers and the family, and they agreed that it was in Addy’s best interests to do something sooner rather than later.

“Here is this thing you love – swimming – and it’s causing you pain,” Hartman said. “She was grieving that.”

On Dec. 23, Addy remembers walking back to the cath lab, where Dr. Ayers was going to find and hopefully eliminate the wayward electrical pathways in her heart that were causing her discomfort.

“I was just so scared walking back to the procedure,” the teen said. “What if they can’t even find it or they can’t fix it.”

She asked Dr. Ayers, “Please don’t give up.”

Addy didn’t walk back to the procedure at Riley alone, her mom said.

“She was walking into the SVT lab and crying. But all the nurses, it’s almost like they cheer you on as you’re walking down the hallway,” Czarnecki said. “We are so enamored with everyone from start to finish at Riley. They exceeded every expectation we could ever have.”

And the first thing Addy asked when she woke up after the hours-long procedure: “Did he fix it?”

He did indeed.

Abby gives a thumbs up at Riley Children's Health

Dr. Ayers explained how he and his team put IVs into Addy’s leg veins that lead directly to the heart, allowing him to pass catheters – thin plastic tubes – into the heart to measure the electricity as it flowed through the heart.

“We figure out where the pathway is, then we ablate it – cauterize that small area that shouldn’t be there,” he said. “We have some advanced technology that lets us do 3D anatomic mapping of the heart and we use that to create a map of her heart, reducing radiation exposure.”

Most kids Addy’s age have one of two types of SVT, Dr. Ayers said. She had both, so he got rid of both.

None of it could have happened without his team, he said.

“We have amazing cath lab nurses and anesthesiologists who help us during these procedures. It is a big group effort.”

“HE DIDN’T GIVE UP”

“Dr. Ayers was amazing,” Czarnecki said. “He didn’t give up; he kept testing until he got both pathways ablated, burning the lining of her heart to stop that conduction.”

Abby with Dr. Mark Ayers

What he was able to do was the “perfect scenario,” Hartman said, “because it fixes the problem and now she’s back to swimming and winning.”

Addy was back in the pool practicing a week after the Dec. 23 procedure, which her mom joked was both a Christmas and birthday present. Addy turned 15 on Dec. 28.

Three weeks after her procedure, she competed in her first swim meet and got close to her personal record. And last weekend, she was able to cheer on her older Carmel High School teammates as they clinched yet another state title – the school’s 36th consecutive title for girls swimming.

Addy’s prognosis is good, said Dr. Ayers, noting that the SVT procedure is generally considered a cure and it avoids the risks of long-term medication.

“We have a 98 to 99 percent acute success rate getting rid of these SVTs for kids. It’s really nice to be able to do that for them, and ultimately it should just be a blip in their life story.”

DOCTOR WAS A PATIENT

He knows a thing or two about being a heart patient as a kid. He had three heart surgeries performed by the esteemed Dr. John Brown at Riley after bacterial endocarditis destroyed his aortic valve.

At first, he felt sorry for himself, he admitted. Then the experience helped clarify his life’s purpose.

“I decided I wanted to be a cardiologist and treat kids and do what Dr. Brown had done for me,” he said in an earlier interview.

Addy and her mom are extraordinarily glad for that.

“We were right where we needed to be at the right time,” Czarnecki said.

Addy agrees.

“It means so much because I finally love swimming again.”

Riley Hospital is ranked No. 5 in the nation for pediatric cardiology and heart surgeries by U.S. News & World Report.

Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org