Patients Talk

Former U.S. Ski Team Member Hopes to Increase Awareness of Sudden Cardiac Arrest

Nicole Stavroff wants the world to know that the face of someone with an implantable heart device might not look like they think.

As an active woman who received her device in July 2005 at age 34, Nicole doesn't fit the image in many people's minds. In addition to being young, being active in sports has always been an integral part of her life. As a teenager in the mid-1980s, Nicole skied for three years on the U.S. Ski Team, excelling in the slalom and giant slalom events.

It was some time after her implant when Nicole's desire to share her story began brewing. “I was running one day and was thinking about how people have these preconceived notions of what the face of some woman with a pacemaker looks like. So I called Guidant (now Boston Scientific) and asked who was in charge of public relations or sales, because I wanted to be a spokesperson. You see people in heart public campaigns and things like that, and I felt that putting a face of a young ex-athlete out there would help the public realize that this is something that can happen to anyone.”

Hoping more people will get screened

Nicole has ventricular tachycardia (VT) and a condition called long QT syndrome. Long QT syndrome is a condition that can be inherited or caused by certain medications. It can lead to sudden cardiac arrest from a chaotic, fast heartbeat coming from the ventricles. This causes your heart function to stop abruptly and without warning. When this occurs, your heart is no longer able to pump blood to the rest of the body.

Although like many people, she refers to her device as simply a pacemaker, Nicole actually has an implantable cardioverter defibrillator (ICD). This device has both a defibrillator and a pacemaker inside. If she experiences an episode of sudden cardiac arrest, the defibrillator will deliver a life-saving shock to help restore a normal heartbeat.

Nicole wants to help increase awareness about the risk for sudden cardiac arrest among people and their doctors so that more people who are at risk get screened.

“I often hear people talk about having my same symptoms and they dismiss it. And their doctors dismiss it. To me, that situation is completely unacceptable.”

Waves of dizziness

Since no one in her family is known to have long QT syndrome, Nicole's diagnosis came as a complete surprise.

Her primary symptom was dizziness. “I would get these waves—like when you stand up and you feel lightheaded—but it was a thousand times worse than that. They would start a little bit, then get worse, and then kind of fade—like a wave. It would feel like it lasted forever, but I am sure it was less than a minute. I kept telling my husband, ‘I keep getting this dizziness.'”

After discussions with her doctor, Nicole agreed to take a tilt table test.

During the test, Nicole's heart function was not normal. So after seeing an electrophysiologist, she wore a portable monitor to record her heart's electrical signals. After a couple of weeks, she experienced an abnormal heart rhythm and headed to the hospital.

Adjusting to a device

After three years with the device, Nicole says her biggest fear now is the unknown. She has not yet received a shock from her device, but knows it will happen some day.

On the lighter side, Nicole said she and her husband laughed when he asked the doctor about whether he would also feel a shock if she got one while they were being intimate.

“It's the little things like that you don't know. It just takes awhile, and then it becomes second nature.”

As a business development manager for NetApp, a company that specializes in electronic data storage, Nicole covers the Americas and travels often.

Regarding her air travel experience, she says, “It's just kind of second nature — the whole process of walking through and getting the pat down. It is pretty seamless now. It is just part of my life. I allow an extra five minutes and off I go.”

Nicole says her family and friends try to keep a good-natured attitude about her device as well. “We have a bet on the over/under of when I am going to ‘get jolted,' as we call it. We kind of make a joke out of it, but I think it makes it easier for my 9-year-old to digest instead of freaking out about it.”

The anticipation of remote monitoring

Nicole just received her LATITUDE® Remote Monitoring system in June 2008. She explains that she has not yet started using the system, and is both excited and a little nervous at the same time.

She likes going to see her doctor and have him tell her everything is OK. But one thing she won't miss is having to remember what she was doing on a specific date when her device recorded an abnormal heart rhythm.

At the clinic, “they look back through my records and ask, ‘OK, so 2-1/2 months ago, on March 23 rd , at 5 p.m., what were you doing?' I have no idea!”

With LATITUDE, the system records information from the implanted device. It can alert her doctor if certain conditions are detectedcan notify her health care team more promptly if something doesn't look quite right..

“So I guess that aspect is hands off. But at the same time your doctor is still involved because it sends your information directly to the clinic, so it is convenient.”

An active family lifestyle

Nicole exercises, runs, and says they are a very active family. Her husband Jeff is an avid golfer who played on the Canadian and Nike tours. Their two sons Hunter, 9, and Hayden, 3-1/2, seem to be following in their active footsteps.

Hunter is an avid hockey player and Nicole plays hockey with him sometimes. But she says she watches her heart rate carefully to ensure she doesn't push it above the tachycardia heart rate programmed into her device.

Concerned that her boys may have inherited her long QT syndrome, they have undergone some initial testing. Nicole plans for them to also undergo more definitive genetic testing in the not-too-distant future.

An “insurance policy”

Heredity concerns aside, Nicole's outlook is incredibly positive. “When people hear I have a pacemaker, I think a lot of them think, ‘You are so young.' I thought that same thing. But then my husband said, ‘You know you have to look at it this way—it is an insurance policy. It is not a death sentence.'

“I now know I am very lucky that I have survived, because many people don't. I can save my life with a little device. There are so many diseases in the world that you can get. When you consider that mine was curable, I consider myself lucky.”

Note: Individual symptoms, situations, results, and circumstances may vary. Please consult your doctor or qualified health provider regarding your condition and appropriate medical treatment. Your doctor will help decide what activities and activity level are right for you. The information provided is not intended to be used for medical diagnosis or treatment or as a substitute for professional medical advice .

While we haven't featured Nicole in any commercials yet, we at Boston Scientific are pleased that she has agreed to serve on our new Editorial Board for LifeBeat. We look forward to hearing her insights and helping us show the faces of patients with devices!

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