Life after surviving sudden cardiac death (SCD)

If you have survived a sudden cardiac arrest, your return to normal life will depend on several clinical aspects of your event and, most relevantly, on the presence – or absence – of neurological or cardiac sequels that might impair your daily activities and effort capabilities. Some patients may return to a near-normal life while others will face limitations that necessitate the adaptation of daily routines for them and their families. You should ask your physician about your limitations and inform your close relatives and friends of your condition so that, if needed, they know how to assist you.

Some causes of sudden cardiac arrest care are inherited and, if that is the case, screening your family members may save their lives. Ask your physician if that is the case and how to proceed to have your relatives assessed.

It is likely that you now have an cardiac defibrillator implanted in you and you will have to learn how to live with it. For most people, living with an ICD does not require much adaptation since most daily routines can be continued, including working with computers and other electronic devices and exercise. In fact, often, restrictions to exercise more actively arise from your baseline condition and not from your implanted device. You can and should discuss your daily routines with your attending physician and, when applicable, exercise. If appropriate, your physician may adjust your device to suit a more active lifestyle.

In most cases, even after a sudden cardiac arrest, a healthy lifestyle still plays a role in preventing future events and is heavily encouraged. It is easier to ease yourself into if you involve your family members and close friends, ask your physicians about your specific clinical scenario and what should you change in your daily routine. Learn more about a healthy heart at – healthy-heart.org.

Want to know first-hand how it is to live with an ICD? Check out our patient testimonial.

SCD survivor – patient testimonial

I have Brugada syndrome and ARVC. My heart can fibrillate out of nowhere. It has happened to me 7 times already, each time resulting in a shock intervention from my ICD. Call it a sudden death that ends with a shock that kick starts life once more.

Sudden is to be taken literally. I get dizzy, such dizziness as what you get when you stand up too quickly. It’s a dizziness of a few seconds’ duration that gets darker and darker. One, two three, and the world shuts down. I start dreaming. The stupidest dream images first. Luckily, I have an ICD and with a shock I regain consciousness and life goes on as if nothing happened.

Half the time, I have felt the shock and when I recover, I know very well what happened to me. When I haven’t felt the shock and I just recover, it has already happened that I don’t quite know “is it now or wasn’t it now? Did I miss a few seconds or am I just imagining something?” At such times, it is good when there are witnesses that I can ask.

Although that too is relative because it happened to me once during a meeting. I was sitting hunched over on a chair, had my head in my hands because I was thinking. Then I lost consciousness for a very short time (maybe 2 seconds) and there followed the shock (10.5 seconds after the start of the fibrillation). No one at the table of 14 colleagues had noticed anything suspicious. It’s crazy how cleanly such an extreme moment passes.

Another time things went much more dramatically. I was sitting in a restaurant. Suddenly the world shut down. I, myself was dreaming the stupidest dreams again; for those around me, I had suddenly collapsed unconscious in the chair. Head back, eyes wide open, the colour of my skin grey, gasping. The initial shock was ineffective. My wife bolted and started CPR. An ambulance was called. The second shock also produced no change. My wife felt the shock while performing CPR and panicked. With the third shock, I regained consciousness (42 seconds after my heart started fibrillating). I knew immediately what had happened to me. Reassured the people around me and called the hospital. The ambulance arrived and took me to the emergency room even though it all felt okay to me.

I, myself, have the experience that such a shock does not hurt. Of course, I feel it and it is intense. When the world closes in like this and I realise I am shooting into it, I find myself bracing myself to take the shock. The shock passes so quickly that the pain has no chance to hurt. When I recover, the realization of being allowed to live again gives such an adrenaline rush that the memory of the pain disappears. And so, I have no fear of such shock either. On the contrary, I embrace my shock like the parachutist embraces his parachute. The parachute ensures that the skydiver returns safely to the ground. In the same way, my shock ICD ensures that I can go on living safely. Only I, myself, never know when I am hanging in the air: it can always happen suddenly.

Axel Verstrael

Testimony of Piet Verstrael, son of Axel Verstrael and witnessing a fibrillating passage with shock and recovery again.

It was 21 December 2015. I was 8 years old. That afternoon, we sprinted 100 metres to catch our bus and sat down in the seat. Me behind dad. Even before the bus left, dad was sitting with his head back against the window, as if he had suddenly fallen asleep. He started snoring instantaneously. Although that is not the right word, it’s not snoring, it was a unique sound. With him, it was a soft growl: gasping.

Dad’s smartphone and his gloves fell out of his hands. I shouted “Daddy, Daddy!” But he didn’t respond. I shook at him and then he suddenly woke up. He immediately told me he had fibbed because he had felt the shock of the ICD. Only then did I realize what had happened. It happens so fast (12 seconds) that you barely realize what is happening. You notice it, wonder “what is this?” And even before I had the reflex to help, he came back.

I didn’t retain anything emotional from this passage. Only at bedtime when I ask Dad something and he doesn’t answer right away, those thoughts shoot through my head and I still check in the room if everything is okay. Other than that, never, because that’s our life.

Piet Verstrael

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FREQUENTLY ASKED QUESTIONS

What is an SCD survivor?

An SCD survivor is someone who has experienced and survived a sudden cardiac arrest, often through rapid medical intervention.

What challenges do SCD survivors face?

Survivors may experience emotional stress, lifestyle changes, and need for ongoing medical care.

What treatments are available for SCD survivors?

Treatments include ICD implantation, medications, and lifestyle adjustments to reduce future risk.

Can SCD survivors live normal lives?

With proper treatment and care, many survivors can lead fulfilling lives.

What lifestyle changes are recommended for SCD survivors?

Healthy eating, regular exercise, stress management, and avoiding triggers are commonly recommended.

How often should SCD survivors follow up with a doctor?

Regular follow-ups are essential, often every 3-6 months, depending on individual conditions.

Are family members of SCD survivors at risk?

Family members may be at higher risk if SCD was caused by a genetic heart condition.