Okay, by popular survey result I'm now ready to publicly talk about my most serious health issue. I have a congenital heart defect called Tetralogy of Fallot (generally abbreviated as TOF). It's apparently the most common complex heart defect, but I don't know other people living with this personally. I know of some celebrities who are reported to have it, but I'm of course acquainted with none of them 😂 .
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Needless to say this condition had a huge impact on my childhood and a lesser impact on my young adult life. From what I've been told it's fair to assume that my natural life expectancy is less than ten if not even five years. Only modern medicine saved me, which made me deeply grateful towards it, so whenever I see somebody who oozes out bullshit about modern medicine and suggests some quack alternative devoid of any scientific foundation, I immediately get furious at them.
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The only treatment is correctional open heart surgery. I've heard that these days it's performed on babies but I was born in the early 80s and back then this surgery was pushed towards older ages. I had my main correctional surgery at the age of four in 1987. Prior to this I was very sickly, got cyanotic often and couldn't even walk for more than a few yards. At the age of one I needed a BT shunt surgery to increase the blood flow to my lungs.
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It must have been a very hard time for my parents.
Being sickly and basically shielded from most other, healthy kids until the age of four had very likely quite some impact on my social development, keeping me socially quite awkward for a long time. This condition led to me entering kindergarten one year later than normal, at the age of four instead of three.
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My admission into elementary school was also delayed by one year because my psychological development was judged not far enough when it was time.
Since the surgery I was and am allowed to do sports, but not at a high performance level. So I was the only boy in class who could never join the local football ⚽ club, which occasionally made me feel lonely.
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Dumb remarks by tactless morons made me start to conceal this condition whenever possible, which is why it didn't occur to me to look out for fellow TOF survivors when social media got big. Another factor helping in that denial was that I don't have to take any meds. Especially in my teens and twenties I was really good at pretending that I'm perfectly fine.
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I even skipped some of the annual checkups because except for the limitations on sports I could live just fine as anyone else. I felt like the only benefit of it was that I was exempt from military service.
Then at the age of 26, a few weeks before I was moving to Japan indefinitely, I was told that my pulmonary valve was highly deficient and that I would need a replacement if the condition worsened by e.g. the onset of arrhythmia.
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That happened in 2022 and I got my second open heart surgery at the end of that year, leading to me spending Christmas, New Year's, and my 40th birthday in hospital. I'm now living with all four valves healthy, but I chose a biological replacement and its life expectancy is less than 20 years, so I very likely will have another intervention in my 50s.
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I could have chosen a mechanical replacement with a life expectancy for many decades but then I would have to rely on anticoagulants for the rest of my life. No, thanks.
An interesting quirk of living with this in Japan is that if you have a valve replacement you're eligible for the highest grade of 身体障害者手帳 (official recognition as physically disabled) which struck me like 🤯 . After all I underwent this surgery to become as healthy as possible again, not officially disabled.
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So, now you know the main issue of my medical history. I might post bits about living with TOF from time to time from now on. I would also like the opportunity to get in touch with other survivors.
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@KuramaSuben thanks so much for sharing! I’m glad to hear you are doing well now, and I really appreciate hearing about your experience.
I work on a lot of clinical papers, and it’s easy to focus more on the language and technical details, and less on human side. So I really appreciate the chance to get to see the patient’s perspective, which still doesn’t get enough attention in the medical literature, especially in Japan.
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