As a child, Spokane resident Holly Tucci enjoyed being active despite constantly feeling tired.
Tucci, 41, was diagnosed after birth with a congenital heart defect – a complete heart block and murmur. Growing up in the Bellevue-Kirkland area, she was drawn to dance and softball. The activities drained her, as did actions as simple as eating.
“The thing I remember the most is just always being tired, even lining up in ballet class and getting ready to practice different poses,” said Tucci, a writer and motivational speaker. She moved here in June 2018 with her husband, Brian, and sons Tanner, 15, and Mason, 6.
“I remember getting tired any time something involved running or when my heart rate would need to be elevated. Running the bases was super hard. During PE in grade school, like doing the mile run, I was always last because I was tired and slow.”
A surgery for a pacemaker at age 9 made a significant difference, and she later tackled swimming and other athletics. After high school, she became a collegiate rower at Washington State University.
Her cardiologist initially suggested a pacemaker at age 12 to allow for her growth, but Tucci wrote a letter to that doctor requesting it earlier. Her petition was granted.
Her second son, Mason, also was born with a heart block, and he had a surgery in July to repair a hole in his heart. He’ll likely get his first pacemaker in the next year.
Tucci said significant advances in heart research and technology have occurred since her birth, but more is needed. Today, she is an American Heart Association volunteer and ambassador to promote the 2020 Go Red for Women campaign with a fundraiser Friday in Spokane.
Tucci joins many people who are living longer with congenital heart issues. She recalled seeing a booklet at the time of her first pacemaker surgery at Seattle Children’s that depicted two seniors.
“Of course I thought, ‘Is this just for old people?’ I’ve come to learn they do it for a lot of kids. It was just very uncommon then.”
Technology has to catch up to longer and more active lives. In Tucci’s second year as a WSU collegiate rower, she started to push the limits of what her pacemaker could do.
At the time, the device was programmed so that if it hit 180 beats per minute, it would automatically drop the rate in half, she said. “It would go down to a 90 heart rate. It led me to feel like I was going to pass out.
“A couple of times, I nearly did pass out. If you’re rowing along in a boat, that’s not a good scenario.”
She did faint and fall off a rowing machine at least twice because of the issue. Experts with the pacemaker company figured out she had maxed out the device.
“They just didn’t anticipate that I was going to get to that rate,” she said. “I met with a technician for the pacemaker company who was able to reprogram my device to get it up to 220 as a maximum.
“It was relatively simple to do, but it was still something that wasn’t expected because I was an active athlete in college and pushing the limits.”
Tucci has outlasted that first pacemaker several times over. Pacemakers typically are replaced about every eight to 10 years mainly because the battery component lasts about that long. That requires another surgery. She expects her next pacemaker-related operation in about three to five years.
“I’m now on pacemaker No. 8,” Tucci said. “There were a couple of recalls and one procedure when they replaced the whole thing because the leads were frayed.”
Better models and parts might be on the horizon, Tucci said: “The American Heart Association is a huge contributor on the research such as just being able to test out different models of pacemakers … working with various manufacturing companies.
“I think it’s still in testing, but they are working on a leadless device, so that would require a lot less replacement. Right now, I’m at max capacity with how many leads are in my heart because they simply added more and more. They haven’t taken any out.”
Leads are thin wires covered by insulation to deliver electrical impulses from the pacemaker to the heart muscle, helping maintain a normal heart rhythm.
Because she started with a pacemaker at a young age, she has one lead in her abdomen and others on the right side and left side of her chest.
“I believe I have a total of seven right now,” she said.
For her last heart-related surgery in 2015, surgeons tried to remove one lead but were unable to because of scar tissue that adheres to the lead inside the heart muscle.
“My surgeon and I had a conversation that they can try to remove a lead, but if it doesn’t work, we don’t necessarily have to do it right now.”
Newer research and devices could mean fewer issues for her son, Tucci said.
“The research that the American Heart Association has been doing and funding and pushing through has definitely helped with looking at overall health and long-term care,” she said. “They also look at what it’s like when you go through these procedures and the recovery period.”
Mason’s heart issues were found in utero, but doctors confirmed a complete heart block this past spring. Mason also was born with a hole in his heart.
“They were thinking it would close up, but it never did,” she said. “In the next six to 12 months, he’ll get his first pacemaker, but we had to repair the hole in his heart first.”
Mason won’t have to wait on a pacemaker until a later age, but there is some risk, she said.
“Once you start, it starts the clock so to speak that in another eight to 10 years, he’ll need another. At the same time, they’re looking at what his heart is doing and the way it’s functioning. They know and understand what is needed.”
For her own health, Tucci continues to be active and loves to run. She won’t be able to attend the Go Red luncheon this year because she planned an Orlando trip for the Disney Princess Races.
“I ran my first marathon in Chicago in October 2018,” she said. “I love to run, walk, and I’m working on yoga and strength. For the Princess Run, I’m doing a 5K, 10K and half marathon over three days.”
To learn more about living with heart conditions, she encourages families to reach out to organizations such as AHA. She began doing so about 12 years ago, and her connection has helped even more with Mason’s diagnosis.
“It’s meant me talking to other parents who have had similar experiences, and a lot of that is because I was plugged into that network already,” Tucci said. “It helped my husband and all of us to understand really what it will look like for Mason.
“If you don’t know, it’s scary. If you can talk to people, you’re not alone in the experience.”