“You will never be listed for a donor heart like this” – when a doctor said these words to me, I was 28. I’ll be honest, I was on the verge of giving up. Almost two months later, a foreign heart beat in my chest.
Inflammation of myocardium. That was the diagnosis that started it all. The doctors suspected that I had probably been doing sports when I was sick. When I was finally able to get started again after a forced break of a year and a half, I could hardly wait. I jogged ten kilometers straight away and felt fit. For a month. Then I fell off my bike in the gym: cardiac arrest. That was just before my 25th birthday.
The defibrillator was sold to me as a kind of life insurance that would protect me from further cardiac arrests. Six months later I felt what that meant. I was in the hospital again, diagnosed with myocarditis again, now chronic, triggered by my immune system. And just before my long-awaited vacation. The therapy was quickly changed and I flew to Ibiza. On the second day, the Defi gave me five shocks in the breakfast room and I passed out. This was my second cardiac arrest.
When the defibrillator kicks in, it feels like a horse is kicking you in the chest at full speed. Nobody prepares you for that. It was traumatizing and I couldn’t do anything about it, I was at the mercy of the device, I couldn’t stop it. I had to endure five shocks.
These shocks were the worst thing I have ever experienced. As a result, I completely lost confidence in the device. From that moment on, I felt that Defi was a ticking time bomb in my chest that could explode at any time. The fear of the device became greater than the fear of the disease. I had nightmares and had to seek psychological care.
The cardiac arrhythmias remained. I ran from doctor to doctor, and at some point they were all at their wits’ end. At this point, the illness had basically taken away everything that used to define me. I could only work part-time, sports were taboo, and so was traveling. I was constantly sick. It was all “in to the hospital, out of the hospital.” In 2020 I moved back to my father. At some point I was too afraid of living alone and all but lost hope that I could get well again.
For years I was led to believe that my heart problems were caused by myocarditis. Until then, none of the many doctors had come up with the idea that there could be something else behind it. None of the many specialists had bothered to do a simple blood test. A doctor from a small town had to come to me and he was supposed to just write me a prescription. Through him I finally got the correct diagnosis and learned that it wasn’t myocarditis but a genetic defect that was causing my heart to scar bit by bit. It was a relief to finally have certainty.
The next low blow came four months later.
The only thing that could be done for me back then that helped, at least temporarily, against the cardiac arrhythmia was to destroy the heart. When the Defi gave me eight shocks after just such an operation – yes, exactly, eight! – it was clear that even this operation, the only option I had left, didn’t make anything better and made everything worse. At 28, I was officially considered to have finished treatment. Only a donor heart remained. Still, the doctor said I had no chance of getting on the list for now.
If I weren’t so stubborn and resilient, I might have seen no point in continuing to live after this statement. But I still wanted something out of life. And I also knew that even if I no longer had the strength to fight for myself, I would always continue to fight for my family. You shouldn’t have to stand at my grave at some point.
The fact that I ended up on the organ donation list three weeks later was thanks to a self-help group and another doctor from another clinic who immediately got me an appointment at a transplant center. It took 33 days after the listing, then the call came: The heart is there.
I remember the new heart pumping differently in my chest. It pounded against my chest so hard it scared me. Whenever I had felt my heart like that before, it had always been associated with danger – suddenly this feeling should be normal. At first I lay awake at night just listening to the heartbeat. I couldn’t believe that this was a healthy heart inside me, the heart of a stranger. We have now grown together and are a well-coordinated team. It is no longer a foreign body, but simply my new heart that keeps me alive.
At 28 I got a bonus life – and I’m very aware of that. Maybe that’s why I really want to live intensively now, experience a lot, take everything with me.
