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Body Proud: Nicolas Lewandrowski

Nicolas Lewandrowski (17) is a student in year 11 at a vocational training college. He was born with a heart defect and has had open heart surgery three times already. In 2013 he had a cardiac arrest when playing football and had to be resuscitated in the playground. After that Nicolas had an implantable cardioverter- defibrillator (ICD) fitted which protects him from sudden cardiac death and gives him a greater feeling of security. Today there are no real limitations to his quality of life. In fact, he enjoys showing people of his own age “that you can live just as well with a heart defect and an implanted piece of metal as any healthy person.”

Your time at school is coming to an end. Do you already know what you will be doing when you finish school and where?

I would like to study or do some vocational training. Which one it will be, university or vocational training, depends on the marks I get in my vocational baccalaureate. But it will definitely be something in the field of mechanical engineering. I’ve already done two internships in this field - both in the same company - and I really enjoyed it there. That might be an option for vocational training.

What do you enjoy doing in your free time? And do you have something like a philosophy of life?

I do a lot of sport and try to go to the gym at least three to four times a week. I don’t really have a philosophy of life but I am thankful - after everything I’ve been through - that I’m still alive and basically can do everything. Of course there are a couple of restrictions but they’re not important for me and I’m not confronted with them every day.

You were fitted with a high tech device a couple of years ago. How did that happen?

I was born with a heart defect and so far have had open heart surgery three times. The third time the surgeons fitted me with a normal pacemaker without a defibrillator function. That was in 2011. Two years later I was playing football at school when I collapsed from a cardiac and respiratory arrest. I was saved by mouth-to-mouth resuscitation and cardiac massage but was in a coma for a week, spent three weeks in hospital and another month in a rehabilitation centre. Afterwards they fitted me with a defibrillator which I still have today. It carries out all the functions of a pacemaker.

How did your friends react to your accident?

My friends and classmates knew from the start that I have a heart defect. After the accident I explained everything to them again. A lot were curious about the technology and were surprised because you don’t notice anything when you look at me.

 

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And have you experienced any symptoms since the operation when they fitted the defibrillator?

No, I feel fine and I scarcely notice the ICD. I had my doubts before the operation but now I can lead a normal life and at times I actually forget that I’m wearing an ICD.

If you’ve already undergone three operations, what goes through your mind about yet another operation?

As I said, of course I had my doubts beforehand. But when I found out what the ICD could do - and particularly what it can do in an emergency - I decided to have the last operation. When I collapsed at school the pacemaker couldn’t respond properly. But in that sort of situation my ICD can respond immediately and intervenes if acute ventricular fibrillation occurs. Fortunately that hasn’t happened yet, but it’s an extra safety net for me. I didn’t have that safety net and backup before.

Are you aware of your physical limits when doing sport?

There is a point when my pulse is too fast and I realise that I have to slow down. I have to pause at that point to let my pulse drop and only then can I carry on. These regeneration breaks normally last a few minutes. In the gym I sit down for 1-2 minutes and drink something, after that I can usually carry on.

Your ICD doesn’t just save lives, it also makes state-of-the-art medical diagnoses possible using telecardiology and home monitoring. How does that work?

With the ICD I was also given a device about the size of a mobile phone, the CardioMessenger. This device sends data on my heart activity during the past day to my doctor at the same time every day, at around midnight. That means he can monitor on a daily basis whether everything is OK. The data are collected at three month intervals and I discuss them with my doctor. He shows me the readings and asks me about any atypical days. If anything unusual were to happen, he would call me immediately and tell me to go to hospital.

How are the data on your heart transferred exactly?

The data are processed and sent to my doctor via a home monitoring service centre. It uses a “traffic light” system so it can detect irregularities early on and change the treatment, if necessary. It doesn’t matter where I am, as long as I’ve got my CardioMessenger with me. It means I’m really flexible, I can travel anywhere and I always feel safe.

What do you have to look out for specially as an ICD-wearer? Are there situations you’d do better to avoid so as to minimise the risks?

I can’t do endurance sports - but then I’m not really interested in them. I can’t go on the dodgems at the funfair because of the electronic waves. And I prefer not to go on the big dipper in the amusement park because my pulse rate would go up too much. But those aren’t things that impact my daily life.

What about travelling? Are there any limitations?

Not really so far. My mother always makes sure there’s a hospital nearby that specialises in pacemakers and ICDs. But so far there haven’t been any problems, nor any need. And when I get to the body scanners at the airport, I just show my ICD identification card so I can go straight through for a hand search.

How often do you have to replace an ICD?

ICDs last for about 10 years. It depends on how much they are used. The battery life of my ICD will end in about three years, which means the device will be replaced. But the electrodes are already in place and can continue to be used.

Why did you decide to support the campaign “Körperstolz” (Body Proud)?

I was convinced by the photos and videos of the previous campaign. I thought, why not take part? It means I can show young and older people who have the same problem that it doesn’t have to change your quality of life. The fact that you’ve got a piece of metal in your body doesn’t mean you can’t live like everyone else.

Did you tell your friends about taking part in the campaign or will some of them be surprised to see you?

I actually told them about it during the preparations. They thought it was great that I was participating. Because they think I can be a sort of role model for others and can show that you can live a normal life even with a heart defect.

The campaign is called “body proud”. What makes you proud of your body?

That fact that I’m still alive - after everything I’ve been through. I had to come to terms with the operations at first but now I’m quite happy that I feel so safe with the ICD.