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On 6 August 2017, I was admitted. It was a struggle to find the ward, so much so that a couple of times we rang the intercom of what we later discovered was the operating theatre. In a very polite and patient manner, a doctor came to explain to us that the ward was upstairs. To my great surprise, she asked me if I was Erika and told me that she would also be in the operating room with me the next day. I thought it was strange. How could she recognise me if we had never met? My parents pointed out that usually people don’t undergo a heart operation at 22-year-olds. Consequently, if she had read the next day’s operations list, she must have recognised me. I had always experienced all the stuff as something normal. It was the every-day life for me, so why should it be different for others? It was the first time that I saw the matter as something that, in fact, in others’ eyes could appear as something abnormal. That day passed very quietly, and I immediately got on well with the lady I shared the room with: I don’t know who between her and me chatted the most!

The next day was the big one. Finally, after a long time, everything was going to be OK! I was the third to be operated on, so I was supposed to go downstairs around 10.30. My roommate was before me. She was very nervous, but I almost fell asleep. When they brought me down around noon (a bit of a technical delay) I had fallen asleep, and when the doctors asked me how I was, I said I was very calm, and indeed it was true. I trusted blindly those who, for the first time, had given name and surname to my particularity a few months earlier.

They brought the stretcher inside and made me lie down on a tiny cot, covering me with this sort of thermal bag, which they cut at the groin’s level so that only the part of the body where they were going to insert the catheters was left uncovered. It was cold. Then they put a curtain between them and my face so that I couldn’t see them and they couldn’t see me. No harm done, “I will concentrate on the monitor showing my electrocardiogram“, I thought. This type of operation does not require general anaesthesia, otherwise it could inhibit the stimulation of arrhythmias, and the doctors would not understand where the problem starts from (and therefore the point to act on).

The cardiac ablation is divided into two parts: first, catheters are inserted from the groin’s veins and are led up into the heart. From here, small electrical impulses are sent to stimulate the arrhythmia so that the surgeons understand where the problem starts from. Once this is understood, this point is healed by burning with catheters. The estimated time from entering the operating theatre to leaving is about one and a half hours.

The doctors told me to stay still and then started. They also said I could feel burning and to inform them if I had pain. The first part went quite well. I had already done an electrophysiological study, so I was prepared. Of course, when they stated that I wouldn’t feel anything, they were lying, because I felt like my chest was on fire every impulse, but I knew that I had to bear it, that it was something to do, so I told myself to grit my teeth. Figuring out the critical point where the arrhythmia was coming from would be the longest part, then everything it would all be over very quickly. In the meantime, I looked at the screen. I realised that, although I didn’t feel anything strange, the electrocardiogram didn’t show a normal heartbeat, there wasn’t any regularity at all. Who knows how many I’d had then! It wasn’t hard to think that if my heart used to beat like that, at a certain point, my body would faint, it was all a mess! It frightened to think about that under the knife, but it would all be over in a short time. Once the electrophysiological study was over, they started to burn to heal: holy cow, that hurt! But who the hell had said that you couldn’t feel anything, it felt like having a flame in your chest! “Well, it won’t last long“, I kept telling myself. But the fact is that the doctors kept trying to burn, but the arrhythmias on the monitor instead of stopping became faster and more irregular. I started to worry, a lot. Then they told me they had to change a catheter and use a bigger one. “Ah, go ahead, it’s not like I have much choice now,” I thought. But I was struggling, I didn’t know how long I’d been there but between the electric shocks, the burning and now slipping a catheter in and out I could feel my body being exhausted, and I was starting to see everything quite blurry. Then they started burning again using the larger catheter, and there I suffered the worst pain I have ever experienced. I didn’t have any strength left, so all I could do was whisper: “It hurts“. Probably, people used to complain before their pain threshold because they told: “Don’t worry, it won’t take long, and we’ll be done,” but when I say it hurts, it hurts so much.

And indeed, when they tried to burn again, suddenly the crazy line indicating my heartbeat became flat. Oh no, I don’t think it was long enough to consider it a cardiac arrest, but it was clear that my 50 kg body was saying: ‘I can’t take it anymore‘. The surgeons started shouting to stop everything and asked me how I was. I said I was tired and asked for a wet handkerchief on my forehead and eyes. My head felt very hot, but I knew the operation couldn’t be much longer and the handkerchief on my forehead was a way to calm down and recover for a moment. The doctor from the day before, Silvia, was so lovely. She was the anaesthetist who gave me the sedatives and had always been beside me. She came even closer to my face and whispered that I was excellent, that I had to stay calm and, meanwhile, she was stroking my face. I felt tears streaming down my cheeks. They asked me when they could start again. I clenched my fists and said that they could go ahead. Then I started singing songs in my head, turning away from the monitor. I had to hold on, but I was exhausted and terrified; I decided to concentrate on something else. The doctors proceeded with shorter burns (30 seconds instead of 60) to force less my body. Shortly afterwards they told me that they were going to make the last attempt. No matter how it went, it would be the last one. I had to stay very still because the critical point was probably at the junction with a vein, and making a mistake would have meant burning a vein. Something to avoid, of course. ‘Now I’m feeling better, thank you”, I thought. They did, and as I’m here to tell the story, they didn’t make a mistake and burnt the right piece. I remember turning to look at the monitor as they burned that spot; I had kept count, and it was, in total, the eighth spot they tried to burn. It was a mess, but then, all of a sudden, lots of little regular wedges appeared: I had a normal rhythm! No more weird stuff, no more strange sounds or figures, everything was perfect, exactly as it should be. Lots of regular little mountains, one after the other. The surgeon pulled out the catheter and ran off. I stayed with the technicians and Silvia. I asked her if everything went well, she said yes. They asked me to move from the cot to the stretcher, but my arm gave way when I tried to stand up, and I fell back onto the cot. They had to move me by weight: my little body couldn’t take it anymore, he had been too good, but now he had used it all up. And the sight of how much blood I had lost was not a pretty one: a cut in the groin, what can you expect. I was quite naive, but maybe it was just as well. I left the operating theatre at about 3 p.m., three hours after I came in.

They took me upstairs and those who accompanied me, better described by the nurses as “my fans“, since they had been asking about me for an hour, ran to me. I am still sorry for how I treated them. I couldn’t take it any more, and when my father is agitated, he keeps talking while I didn’t want to hear anything. I went into my room, drew the curtain and with the little strength I had left, I burst into tears. A liberating, emotional, fragile and strong cry at the same time. I then realised that in the eyes of those who were there it did not look like a cry of relief, but rather of sadness, and I read my parents’ concern when Silvia came to see how I was and to tell us that the surgeon would come to talk to us. No one had come with my bed partner, so yes, I suppose it was legitimate to think that something had gone wrong, even though I had reported that everything had gone well. Two hours later, the surgeon arrived, and he just wanted to make sure I was OK. He explained that my peculiarity was extremely rare and, for those who know, extremely interesting. Our heart’s crucial point is the atrial sinus node, where the electrical impulse passes from the upper part of the heart to the lower part. As this is an essential point for life, when we are inside the mother’s belly, several ‘little tubes’ are developed so that the impulse passes, then before we are born they all close except the main one. Here, I had one more open and, therefore, the electrical impulse passed from above to below, but, in my heart, a part went back. They used an orbit as a comparison: I had a piece of heart that was like an orbit. In the end, it was all in all a nice peculiarity. My little heart was just a little bit safer than the others.

That afternoon they visited me many times, they were so lovely, and I felt very pampered. The next morning I was much better! The surgeon came to visit us and asked me how old I was, so I answered (I was 22 at the time). I remember that he caressed my arm smiling and said “You did well“. I asked him why I had suffered so much pain compared to what they had said, and he told me that if I was 50 kg and had a skinny chest, it was inevitable that I would have pain. In a nutshell, the fatter you are, the less it hurts. If they had told this earlier, my grandmother and I would have figured a solution out for sure! (Italian grandmothers used to cook a lot for their grandchildren)

I came out of hospital on 8 August, limping a bit because I had groin pain. “A few days’ rest for the groin wound to heal and then you’ll be great”, they said. But there was one thing that had not been considered: I had never had a normal heart rhythm.