Patients Learn to Live with Life’s Jolts
Families, couples and singles clustered around rows of long tables in the conference room at Kaiser Permanente Medical Center in Panorama City. Children squirmed and yawned; young mothers hushed crying babies; a few fellows hung back in the rear of the room. Then a tall, dark-haired man in sneakers announced that it was his 41st birthday, and the whole room erupted in song.
“Happy birthday, dear Vinny, happy birthday to you!” sang the crowd as a nurse presented a coconut-topped cupcake to Vincent Giglio of Playa del Rey.
The group has good reason to mightily celebrate birthdays. This is a meeting of people who have died and were revived after their hearts stopped beating.
According to Dr. Carol Zaher, Kaiser’s chief of cardiology and director of electrophysiology, they have “sudden cardiac death syndrome,” a serious disorder of the heart rhythm caused by coronary artery disease, hardening of the arteries, a heart attack or some other heart problem. Their hearts can stop beating at any time. “If it happened once, there is a high risk it will happen again,” Zaher said.
No cure exists for the erratic heart rhythms of these patients. To keep their hearts regularly pumping, they depend on an “automatic implantable cardioverter defibrillator.” Patients simply call it “the box.”
The device weighs 250 to 300 grams (about 10 ounces) and is the size of a large deck of cards. Implanted just under the skin in the abdominal region with two wire patches attached to the heart, it monitors the heartbeat. If an irregular rhythm is detected, the heartbeat is brought back to normal with up to five electric shocks 10 to 35 seconds apart. “It’s like having a paramedic inside you,” Zaher said.
According to Giglio, whose device went off 40 times in a two-year period, the sudden, severe jolt on the heart feels like a hard blow emanating from inside. “It knocks you right on your buns,” he said. “It’s like a horse kicking you in the chest.”
Approved by the U. S. Food and Drug Administration in 1985, AICDs are the last resort, used only when drugs cannot control a patient’s heart irregularity. Only about 17,000 of the devices exist in the world. The average recipient is 59 years old; the youngest is a child of 7. About 80% are men. Five-year survival rates for patients with AICD implants are in the 95th percentile, according to Zaher.
“The machine is my 911,” said George Vartanian, a 62-year-old Canoga Park resident who had an AICD implant two years ago. “If my heart attack occurred five years before it did, I wouldn’t be here.”
“The majority of people don’t make it after a cardiac arrest,” Zaher said. “These people made it, but a lot of emotional trauma goes with having died before. Disease is a twofold process: what is wrong with the body and how people deal with it.”
Zaher founded the support group--which recently voted on the name “Zaher’s Zappers”--to help patients and their families cope with the anxieties associated with their implants.
About 70 members travel from all over Southern California to Panorama City to share problems, admit fears and ask questions about AICDs. Zaher lightens her technical explanations and medical updates with frequent jokes and anecdotes. She leads the group, which meets every two months, along with Judy Child, a cardiopulmonary registered nurse.
“Patients get encouragement from one another,” Child said. “The group helps them find alternate ways of dealing with problems.”
One after another, patients stood up and swapped stories. Some were eloquent and eager to talk; others were awkward and hesitant. Their conversations were peppered with bursts of applause, frequent expletives, loud laughs and a few tears. “Watch me,” said one member as he rose from his chair. “If I turn white, you know it’s going to go off.”
“It does good just to hear folks talk about their experiences,” said one young man who was accompanied by his two small sons, who sported heart-shaped pins on their chests. “At least I know they are going through the situation too, and I see how they are getting over it.”
The area around the implant can be sore and tender. Simple movements such as bending down to tie a shoe become painful, difficult tasks.
“The box digs into my hip and ribs,” Giglio complained. “It’s like a Walkman in my stomach.”
Clothes may not fit over the new bulge in their middle, so some patients take to wearing suspenders or jumpsuits. “How do you wear your pants?” members asked one other.
Many patients remarked that they tire easily. One man, who was forced to retire from his position as an electrical engineer for Jet Propulsion Lab, said grating cheese now wears him out. Devices can malfunction and misfire a painful series of shocks. When one member announced that he had been shocked 53 times in a row, the group gasped in sympathy.
Younger patients said they worry most about losing their jobs. Giglio, a contractor, can no longer climb a ladder, get on a roof, bend down or lift his arms. For many months after his implant, he was not able to drive. “My business just went to hell,” he said. “There are healthy guys out of work, so what is a guy like me going to do? How many people are going to want to hire a person with sudden death syndrome?”
In the planning stages are sophisticated devices that can be programmed to buzz a warning before firing, enabling wearers to safely drive or climb a ladder, Zaher said. “Or jet ski,” added one member hopefully.
But such technological advances are far in the future, Zaher warned. For now, all she can do is offer to contact employers to help patients get their jobs back.
Many patients said they fear that they will land in an emergency room where the medical personnel will not be familiar with the AICD or will mistake it for a pacemaker. “In 1986, there were only about 3,000 AICDs in the world,” Zaher said. “Until recently, there were less than 10,000. It is such a new device that I don’t expect all doctors to know all the specifics, but patients get very uncomfortable when a doctor doesn’t even know what it is.”
The crowd laughed nervously when Zaher told them about a fellow support group member, a Marine, who was called up to Saudi Arabia. When he tried to explain his AICD implant, the skeptical medical examiner growled, “Some people will go to any lengths to not serve their country.”
“The patients have to educate the care-givers, including RNs, physicians and other paramedical personnel,” Child said. “It is very unnerving for the patient to face care-givers who don’t know what the device is.”
She described one instance of a paramedic who “reacted hysterically, yelling and out of control” when a patient’s device fired.
“I would like to travel,” Vartanian said. “But my greatest fear is that something might happen while I am away, and no one will know how to handle it.” For the time being, he ventures no farther than San Diego and San Francisco.
Zaher and Child are doing their best to spread the word to health-care professionals. They conduct seminars and speak at workshops and conventions throughout the nation. “I’ve gone on so many speaking engagements, you’d think I’m preparing for the ’96 Democratic primaries,” Zaher said.
Despite the hardships, “you cannot let this take over your life,” one member said. “It is there and you’ve got to live with it. Find out what you can do and do it.”
Zaher said her AICD patients have developed their own philosophy. “These are people who have died. Once that happens, you can’t help but look at life differently,” she said. “I’ve learned a lot from them--that you have to live your life day by day. I tell my kids, ‘Don’t let the little things bother you; life’s just too short.’ ”
SUDDEN CARDIAC DEATH SYNDROME The syndrome is an incurable heart-rhythm disorder in which a patient’s heart can stop beating at any time. To keep their hearts regularly pumping, they depend on an automatic implantable cardioverter defibrillator.
