This is a translated piece from a poem written by my cousin and wonderful friend Simon, which I read some days after I woke up in early March, from a coma.
Why was I in a coma?
Well, you might have guessed it, because a week before, at the age of 28, I had a sudden cardiac arrest.
When I was 6 years old, I was undergoing a regular health check in school when the doctor noticed something unusual while listening to my heart.
I remember well how she looked at me and asked if I was feeling nervous. I simply shrugged and said, “Not really.”
Some weeks later, I was sent for an ECHO and an ECG, and it was noted that something was very obviously not right.
I was sent some days later to the hospital for further investigation, and what came out was that I suffered from a rare heart disease called arrhythmogenic cardiomyopathy (ACM).
Most people’s heart rhythm looks like this:
For more than 20 years now, I have been living with this chaos inside me:
I know, that doesn’t look great. However, if you suffer from a heart disease yourself, seeing something like this might not be all too shocking for you.
Since that diagnosis, it was recommended that I go regularly to the hospital for yearly checkups.
I was put on medication, to which I responded very poorly, and was therefore taken off again.
I have had three ablations (a procedure that uses small burns or freezes to cause some scarring on the inside of the heart to help break up the electrical signals that cause irregular heartbeats). Supposedly, these can help the heart maintain its normal rhythm. But each one of those procedures failed.
However, while all this was going on, I did live quite a normal life. Or, as most would correct me and say, quite an adventurous one.
I’ve climbed various mountains (Mont Blanc, the Matterhorn, the Grossglockner, and so many more), explored the ocean’s depths as a divemaster, traveled to countless countries, trained in muay Thai in a camp in Thailand, and spent weeks at a time hiking alone in the wilds.
Rarely did I tell people about my heart disease, simply because I had never felt the need to do so—as I easily managed to do everything.
I had never felt that something was off.
In fact, to the fascination of many cardiologists, my heart rhythm becomes normal when I play sports or when I am under stress.
Often, cardiologists explain that I am like a car stuck in first gear for too long before I switch to second gear, third, fourth, and so on.
It honestly really feels like that. The first 15 to 30 minutes when I start engaging in a sports activity are always tough for me, and I start out slow. But after that, I feel like nothing can stop me.
Because I felt good in general over the years and had no problem at all with anything physical, I actually lived like I had no heart disease.
And I am glad that I was able to live like that.
However, that all changed on the 19th of February 2021, when I was reminded, as many cardiologists have said over the years, that I did have a serious heart disease.
The day of my cardiac arrest was no more than a normal day.
I went to my coworking place, worked, had an after-work get-together, laughed and chatted with friends, went to my girlfriend’s place, and hung out with her.
We went to sleep… And I woke up days later in the hospital unaware of what had happened.
Thanks to the quick thinking of my girlfriend and the paramedics showing up within minutes, my heart started pumping again, and I was given a second chance at life.
I got lucky. Very lucky.
Especially if you consider that 9 out of 10 people do not survive an out-of-hospital cardiac arrest. And those who do often end up with permanent neurological problems because the lack of oxygen has damaged their brain.
Yet somehow, I did wake up. With no permanent neurological damage.
I know, there is a ton to be grateful for.
However, that does not mean this hasn’t been a rollercoaster ride with many ups and downs.
This is precisely what led to my decision to create The Heart Warrior Project.
I am very grateful and have a lot of respect for the medical professionals out there, as likely, many who have survived a cardiac arrest are too.
It is because of them (together with my girlfriend) that I am still here.
However, there are a couple of frustration points that I had throughout the period of recovery and on this journey as a survivor, which led me to create The Heart Warrior Project.
First, there is only so much time you can have with your cardiologist at each consultation.
Often, no more than 15 to 20 minutes max. That truly is not a lot of time to ask questions, process, and understand all that is going on about this pretty big event that has happened to you.
I do understand why, of course, they don’t have forever to talk to you.
There are just too many people in the world and not enough doctors. Therefore, time is not spent talking about how you feel, how this is challenging for you, but rather on treating the problem at hand.
Nonetheless, surviving a cardiac arrest is not a minor event. It is a true rollercoaster ride, and therefore emotionally taxing and challenging to navigate.
From my experience, there really is not a lot of time and care spent on taking that into account. This can lead to frustration, fear, loneliness, feelings of being overwhelmed, and so many other things.
And these are the things I’d like to help others with here on The Heart Warrior Project: by sharing the stories of other cardiac arrest survivors, helping you feel inspired, offering tips, and making you feel less alone in all this.
Moreover, by doing interviews with cardiologists and other experts, I hope to help you answer specific questions you might have.
Finally, the second reason/frustration that spurred me to create The Heart Warrior Project is because I was surprised at how little, almost nothing besides medication, was provided to me to help ‘better’ my life after the event.
There were zero tips on food to eat, exercises to do, supplements to take, or any other lifestyle suggestions.
And again, I can understand how medication is the easiest way to attain certain results. You just have to take a pill and that’s it.
Yet, personally, I wanted to do more than merely take medication to improve my life. So, I ventured on a quest to see what else I could do that would benefit me.
By no means have I become an expert, nor am I saying medication does not play a vital role. But I did discover that there are more—way more things supported by great scientific data—that can help make your life better if you have a heart disease and survived a cardiac arrest.
Here on The Heart Warrior Project; you can find articles about these ways.
Now, these two frustrations that have led me to create this project aren’t mine alone.
In support groups with other survivors, I have noticed that many other people also struggled with these same two frustrations: the lack of emotional support and the lack of advice on how to improve their lives, besides taking medication.
If you cared enough to read all the way to this part, I would like to finish this About Me section by sharing why I called this The Heart Warrior Project.
Because many people who struggle with severe diseases, like a heart disease, and those who have survived something tragic, like a cardiac arrest, embody many warrior traits: perseverance, courage, bravery, and strength.
Whoever you are, whether you are struggling with a heart disease, survived a cardiac arrest, or both, you are a heart warrior.
You can be damn proud of yourself for standing strong and not giving up, even if you might not always feel like it. And for battling on through all this.
I know this road can be lonely and has many ups and downs, but you are certainly not alone, my heart warrior friend.
I sincerely hope that you may find inspiration, motivation, ways to better your life, and a sense that we are here for you, here on The Heart Warrior Project.
Note that The Heart Warrior Project is run by one guy, which is, yes, me.
In between work, studies at university, and just life, I try to squeeze in some time almost every day to work on this project. This project takes a lot of work, as I genuinely want to deliver high-quality and helpful content for survivors here.
And I do it with much joy every day.
However, it’s not only time that this project requires, but, obviously, money to keep it running: from website hosting, to plugins that make the website more functional, my proofreader, Adobe Creative (to edit the podcast episodes), a booking system to make it easy for guests to appear on the show, and podcast hosting.
I do not mind paying for any of these as I care a great deal about this project.
But help is always appreciated.
Therefore, if you have found or come to find anything helpful or insightful here on the website, please consider supporting The Heart Warrior Project.
I, together with an illustrator, created the design for them (and we’re working on more cool designs to come).
Both the t-shirt and the mug are made from durable and quality materials, and don’t they look just great?!
Of course, these are just suggestions, but I do not think you will regret having them.
I personally love wearing the t-shirt myself. And I drink my coffee every day out of my Heart Warrior mug.
If the t-shirt or mug doesn’t speak to you, there are a few other ways to support The Heart Warrior Project:
Choosing any of these ways to support this project will truly help me a lot in putting out more content and building The Heart Warrior Project further.