A Drum Machine with Congenital Heart Disease
heartbeatdrummachine.com
heartbeatdrummachine.com
My new mechanical valve ticks audibly, and as a musician I was a little worried about how it might affect my sense of rhythm or tempo. Fortunately, I've gotten pretty good at ignoring it, especially when there's lots of other sound, but I can pretty much always hear it.
The sequences shown have BPMs associated with them. I wonder if the product engineers adjusted the EKG results to line up to a particular BPM or just selected portions where the patient's heart rate was pretty steady. I also wonder if there will be any ability to change the BPM on the drum machine. Either way, this is a fun project.
Edit: wording
As for how long one can go, I was diagnosed at 6 months old, but I've read stories of people in their 60s or 70s when they're first diagnosed. It's a very common condition; about 1% of the population have it, and I personally know a few other people who've been diagnosed. It also seems to vary pretty substantially in its severity; it seems lots of people could have minor cases and not know until later in life. I was told at various times that I'd need surgery by the time I was 14 or 26, so I consider 34 a win in my scenario.
I know I'll need my valve replaced at some point, I hope they gave you a good long term postop prognosis, I know the tech keeps getting better every year.
The ticking sound really isn't that bad. After a couple of days I was able to ignore it. Other people can hear it in quiet environments, but it seems like most people don't notice it. I do occasionally move to turn off my turn signal while driving only to realize I'm hearing my valve, not the car.
I run a startup that links patients with specialists and surgeons around the world called [Me2MD](https://Me2MD.com). I cannot tell you the number of people who come to us with little to no idea of what to do. There is a lot of knowledge out there but no real practical advice.
Paediatric Cardiology pathways are fairly well developed and treatments for VSD and ASD are well defined.
It's just that parents (especially in developing countries) don't know how to access practical advice from experts and, more importantly, past-patients.