Carrie Romero, who has an internal defibrillator, leads the support group’s discussion about living with heart failure. (photo by Anne Rayner)
Defibrillator support group takes shock out of heart failure
On July 22, 2002, 32-year-old Carrie Romero received the shock of her life.
She had just finished performing for the first time in front of a crowd near Cinderella's Castle at Walt Disney World. It was her dream job, and she was energized as she left the stage and walked toward the breezeway of the castle.
She could hear the celebratory fireworks that always end the show as she leaned against the wall, raised her fist in the air and was about to proclaim a triumphant “yes!” when the shock came.
At first she thought she had been hit by an errant firework, but within seconds she realized the sudden jolt she felt inside her chest was the internal defibrillator and pacemaker delivering a life-saving electrical shock to her heart. She had had the device for five years, and this was the first time it had done what it was designed to do — restore a normal rhythm to her heart.
“It's horrible. It feels like you've been shot by a gun. The instinct is to grab the chest and get it to stop,” Romero said.
A team of paramedics and security came to her aid. They checked her out and performed an EKG. Romero decided not to go to the hospital and instead went on to do four more shows.
“That's why I have the device,” Romero said. “It's to live my life and not sit by and wait for it to do its job.”
When Romero was 28 she was diagnosed with dilated cardiomyopathy, a condition marked by an enlarged left ventricle, which leaves the heart unable to pump blood effectively. Her physician, Walter Clair, M.D., assistant professor of Medicine, told her that the best insurance policy was to get an implantable cardioverter defibrillator (ICD).
An ICD is a generator with a battery and computer circuits that is implanted in the patient's chest or abdomen. Electrical wires run from this generator to the heart. The heart is monitored for fast rhythms, and the generator will rapidly pace or shock the heart back to a normal rhythm. It stores the information so that the doctor can review it. ICDs are a treatment for an abnormal heart rhythm, not a cure.
Many patients say the jolt feels like a horse kick to the chest. Fear of the ICD doing its job is matched only by the fear of it malfunctioning.
To help address the concerns of patients with ICDs, Vanderbilt Heart & Vascular Institute offers a defibrillator support group — affectionately known as Vanderbilt Shockers — that meets four times a year, on Saturday mornings. A group of patients and their families attend, along with cardiologists and nurses.
Dawn Sabin, R.N., cardiology case manager, has spearheaded the support group since its inception in 2007.
“Having an internal defibrillator is a life-altering event as a patient,” Sabin said. “More patients are getting them and at a younger age. Many of the patients who come to the support group for the first time are overwhelmed by the number of people who have them. It's a really special group to come and talk with. They appreciate the fact that Vanderbilt is willing to facilitate this.”
Romero, a former actress and model, said the ICD has never stopped her from doing what she wanted, whether it is to ride roller coasters or experience pregnancy and childbirth. The emotional challenges are more difficult to contend with than the physical ones, she said.
“When I first got the ICD, I didn't expect the emotional side of how it affects you. Being a younger person, I had a sudden realization that my heart depended on this device and that it had to potentially save my life. At the time it was frightening,” she said.
“After I got the device, for about a year I thought I couldn't do anything. I decided to put that thinking aside or I would be confined to my couch. I was not interested in that.”
Romero joined the support group last year and was pleasantly surprised to find that other patients have similar concerns. The participants share their fears, ask questions of physicians and listen to guest speakers.
“I think the benefit is to know there are other people going through what you're going through. If you're a new patient it's nice to know someone has gone before you. Someone understands what the struggles are. There is only so much information a doctor can share with you,” she said.
“As long as I'm taking my medication as prescribed by my doctors and getting my exercise and living a relatively normal life, I don't live in fear of getting shocked. I feel like I've been given the device to live my life. It is there to save my life. If it needs to deliver a shock it will. It'll be painful, but I'll get over it. I am grateful, beyond words, that I have it.”