RUDY NUSINK LIVED EACH DAY with a looming fear of dying when an ICD (implantable cardioverter defibrillator) was first put into his chest. "When it was first in there I was scared to death," Rudy, 63, recalls. "It's the unknown. You've gone through an episode [heart attack]where the bulk of people never make it past the stretcher. And now they are going to put this in you with the fear that when it happens again, is it going to work? Every little twitch you think, 'Oh my God. This is it. This is the end.'" But after nearly two decades of living with heart disease and heart attacks, Rudy has grown to trust the little device that can save his life.
ICDs monitor the heart, shocking it into rhythm if needed. They are implanted when a patient has survived a cardiac arrest or a life-threatening heart rhythm and is at risk of it happening again, or if a patient is deemed high-risk but has never had a cardiac arrest. That's true of about 90 per cent of people with ICDs, who have them preventatively, says Dr. David Newman, a cardiologist at Sunnybrook's Schulich Heart Centre. "It's a safety net. For some patients, adapting to the fact that you might have to jump into the safety net is difficult," says Dr. Newman. "We all walk around knowing we will someday die, but we don't all have an ongoing physical and psychological reminder that the sword, so to speak, is over our head at this moment. People have to cope with the possibility that this machine may go off."
And by "go off," Dr. Newman means a 600- to 700-volt shock to the heart. Most often, ICD patients receive appropriate shocks: the machine detects a life-threatening arrhythmia and shocks the heart back to normal, usually after the failure of less painful rapid pacing manouevres to try to restore normal rhythm. On rare occasions some patients will get a shock when it's not really needed, due to machine malfunction or a quick but benign heart rhythm.
"Getting a shock – appropriate or inappropriate – allows some patients to feel greatly reassured," Dr. Newman says. "For other patients, getting a shock is a reminder of their frailty."
Rudy, for instance, has received nine shocks – all of them deemed appropriate. "It feels like my chest is exploding," he describes the ICD action. "Now I'm starting to feel like I can go around without any fears, without any apprehension of having to rely on someone else with an external defibrillator. I know I've got my little buddy inside of me that can give me a whack."
But while living with an implantable heart device has complex psychological effects, it shouldn't stop patients from living a full life. Sunnybrook nurse practitioner Suzette Turner meets with patients in the arrhythmia clinic to help them deal with their ICDs in a positive way. Many patients suffer from shock anxiety and behavioural avoidance, she says. "They may think it's something they did that caused the shock, and so they want to disengage in life," she says. "We encourage people to carry on living their lives fully. This is there as an emergency system and if it were to happen, know you are protected."
It's an adjustment for the whole family, Rudy says. His adult children might wonder if it's safe for him to hold an infant grandchild, for instance, or to babysit.
The fear factor can affect intimate relationships as well, Dr. Newman and Suzette point out. "There's the patient's perceived sense of frailty. There's angst over proximity to death," Dr. Newman says. "There's the physical fear of getting shocks, or even of giving their partner a shock – which is not a realistic or practical concern, but you can imagine where that goes in someone's imagination."
Suzette encourages patients to start with simple acts, like hugging, cuddling and kissing. And Rudy says his treatment has brought him closer to his wife Petra. "With a lot of [heart medications] there are secondary impotency problems. And it's more in my mind than in hers. But it hasn't destroyed anything between us. I'm happy to say I actually think it's brought us closer together. We talk about everything; she's very accepting that way and she's very supportive."
For other patients living with heart devices, Rudy offers some advice: "A lot of people may want to just go in the corner and die but I've tried to maintain as much as I possibly could," he says. "Relax. This is just another additive to the whole regime – the drugs, the counselling, the diet. It's a benefit that can save your life. It's a security thing, and the alternative isn't any good. It's not always easy but it's worth it."
4 TIPS FOR LIVING WITH AN LCD
1 ASK QUESTIONS Be assertive in expressing your concerns to your health-care provider in the device clinic. Write down your questions in between appointments. Seek support from a counsellor or psychologist if you are having difficulty coping or having trouble with intimacy.
2 PARTICIPATE IN PHYSICAL AND SOCIAL ACTIVITIES
3 TRY RELAXATION TECHNIQUES LIKE YOGA OR BREATHING EXERCISES
4 FOCUS ON THE POSITIVE ASPECTS "Everyone has a different notion to living a life. Live your life. And engage your life," nurse practitioner Suzette Turner says. •
Driving with an ICD
After receiving a shock, ICD patients are unable to drive for one to six months, depending on why a device was originally implanted and if the shock was deemed appropriate. Generally, the recommendation not to drive is communicated to the Ministry of Transportation, which then decides what to do about the patient's driver's licence status.
"The machine, you will recall, is not necessarily there to prevent an [abnormal rhythm or heart attack] it's generally there to treat after the fact," Dr. Newman says. "So imagine, you are driving along on the 401 and the machine works. It's still going to take eight to 10 seconds, at the shortest, to sense that there's an abnormal rhythm and charge up and shock your heart back to normal."
During this time, the patient may feel dizzy, lightheaded and may feel a shock. "If you are behind the wheel, this may impair you. We tell patients they shouldn't swim by themselves or ride a horse by themselves," Dr. Newman says.
Rudy has been cleared to drive, but limits his trips. "Personally I won't drive in to the city. I'll drive just close to the coffee shop," he says. "I don't want to endanger anybody else. I know what could happen." Rudy relies on public transit or his wife, Petra, to take the wheel on longer trips. •