A Drum Machine with Congenital Heart Disease(heartbeatdrummachine.com)
heartbeatdrummachine.com
A Drum Machine with Congenital Heart Disease
https://www.heartbeatdrummachine.com/
8 comments
I have a bicuspid aortic valve (on top of other stuff that was repaired when I was younger), I could hear my heartbeat until I was 28 when I went on a beta-blocker that decreased the sound levels and is supposed to reduce wear on the valve.
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.
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.
Yeah, I'm 34, and they gave me an On-X valve which seems to be the most current tech in use on the mechanical valve market. The most urgent need was actually to remodel my ascending aorta (complications caused by the BAV), and their hope was actually to re-implant my own valve after rebuilding the aortic root. However, when they got me opened up and saw the valve, the decision was made that it was too far gone and would have needed replacing soon anyway. I knew going into the surgery that it was about a 50/50 chance.
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.
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.
If you don't mind me asking, how old are you and what prompted you to replace it? Just curious how long one can go with the bicuspid valve. While living with it, how did it affect your life?
I'm 34. I never experienced any symptoms as far as I was aware although they include things like fatigue, so was that my BAV or just the fact that I've just had a long, active day? My cardiologist noticed at my last annual exam that some of the factors they track had crossed concerning enough thresholds to make me a surgery candidate.
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.
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.
This seems like a good candidate to use the web audio API to make these playable in a browser.
Beautiful work.
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.
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.
Were you featured on NPR?
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