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Patient Stories

Patient Stories

Rollercoaster (about 2 months after surgery)

Boy, how easily your life can suddenly be turned upside down. I have never had any complaints, no arrhythmias, cardiac arrests, or anything, and yet I have recently become a heart patient. I went into the hospital in top physical condition and with no complaints, only to leave with an S-ICD and with a physical condition which was completely deteriorated, I lost all confidence in my body.

Rationally speaking, I should be happy. I'm very lucky that a genetic heart defect with a high risk of fatal outcome has been detected early in the family. On the other hand I also feel bad luck, shock and disbelief that I had also turned out to be a carrier. Looking at it in rational terms, I feel very lucky that I can be given preventative help with something which could have been fatal for me. I'm safe,and I had the choice too; whether to go with the 'traditional' ICD or the 'new' S- ICD. I made that choice quickly, I am sporty and still young enough to experience a few 'battery exchanges' and therefore the advantages of the S-ICD were enormously appealing to me. Nothing penetrates my heart and I will not have lead complications typically associated with transvenous leads. Although I didn't have any doubts, I was nervous about whether I could ever get used to such a big device on my left side. I also had other concerns such as whether my S-ICD would make a mistake when my heart rate is high whilst mountain biking. How do I explain to my children that horseplay will have to wait for a while?I don't want to scare them (let alone tell them that they are also at risk of having my defect).

What a rollercoaster. One moment, you have nothing to worry about and the next, you walk out of the hospital as a heart patient, with a device that relies on a battery that will have to save your life when you are about to kick the bucket. I feel really conflicted; I am glad that I have my device, but at the same time I'm having trouble accepting it and feel anxious about being dependent on a piece of technology. I’m experiencing emotions that are difficult for others to understand and which I myselfdidn't count on having.

I completely underestimated the emotional impact that this would have on me. Physically, I honestly feel better than expected. I needed my pain medication badly for the first week, but after 2 weeks everything was unexpectedly better. Admittedly, after two months it's still all very sensitive to touch (a 'collision' with the device is not recommended, let me tell you), and sleeping on my left side is too painful. Also, when I walk I feel my S-ICD continuously, like there is a wallet under my armpit. However, it is no longer painful and in just a few more weeks I will be able to drive a car again. My cardiologist has also indicated that I will be able to exercise again within a few weeks. I can't wait, because I only want one thing-to go back to the way I was before, well as much as is possible.



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