Hello medical person here 👋 First of all, don’t panic! As you said, most of the information out there is going to be about severe disease that requires valve replacement.
How was this diagnosed? If it was just by listening with a stethoscope, please reduce your panic further. Murmurs heard with a stethoscope are one of those things that can be a bit operator dependent, based on the skill/experience level of the person listening.
If you haven’t had an echocardiogram 心臓超音波検査 / 心エコー (putting an ultrasound on your chest to look at your heart) then that would be your next step. An echo gives the ability to see the structure and function of the heart and it’s valves. Any Cardiologist 心臓専門医 can help you with this, usually in their own clinic.
Google says 50% of people with severe heart valve regurgitation are still alive 5 years later while 80-95% of people with mild to moderate regurgitation are alive after 10 years. That doesn’t mean that’s how long you have to live. It just means those percentages of people were still alive and living beyond those timeframes when followed up with.
It also says people 65 and under who undergo a valve replacement have on average 16 years of life expectancy. You caught your disease early on it sounds like, so I feel like you’re ahead of the game in terms of monitoring it’s progress. I’d get the annual checkups and see how fast it seems to be progressing. Could be slow as molasses. I don’t know how old you are, but if your disease progresses slowly, it could be years and years before it’s bad enough for a valve replacement, and then after that you’ve got ~16 more years. You could still be looking at decades of life.
Hey man. Definitely want to find a cardiologist (shinzousenmon-i) 心臓専門医).
From a person with a potentially terminal chronic condition myself (started off grave, but ended up a lot better than initially expected), it is essential to make sure you have the support at first to get through any grieving or existential crisis.
But if your condition is moderate than you can very much live a normal life. Watch your blood pressure closely and take meds if need be to keep that optimized. Japanese love their salt, but do what you can to minimize that as salt very easily spikes your blood pressure.
In terms of physical exercise, from what I understand with moderate AVR you can do a moderate amount of exercise and it will go a long way in keeping your cardiovascular system optimized, but always follow your doctor’s advice on that.
And lastly, ‘letting go of all things out of your control’ became something I really started trying to internalize. It’s so easy to trip over yourself with predictions and worries about how things are going to go, but that is time taken away from the right now.
Regardless, I wish you well on your journey through this. You can always PM me if you need to vent or have questions.
I know of 2 people who recommend this clinic highly if you speak Japanese. I’m not sure what tests you need exactly but I would call and ask.
I had my heart checked top to bottom here and did bloodwork and everything. I can’t recommend them enough, assuming they can do what you need.
If you go to a good heart doctor in a major hospital, they will give your heart and arteries a good check. They can also see things in a CT that an echo can’t pick up. If you get a 紹介状 you get in easily and a heart CT scan is not as expensive as the alternative.
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What did your doctor say?
Hello medical person here 👋
First of all, don’t panic! As you said, most of the information out there is going to be about severe disease that requires valve replacement.
How was this diagnosed? If it was just by listening with a stethoscope, please reduce your panic further. Murmurs heard with a stethoscope are one of those things that can be a bit operator dependent, based on the skill/experience level of the person listening.
If you haven’t had an echocardiogram 心臓超音波検査 / 心エコー (putting an ultrasound on your chest to look at your heart) then that would be your next step. An echo gives the ability to see the structure and function of the heart and it’s valves.
Any Cardiologist 心臓専門医 can help you with this, usually in their own clinic.
Google says 50% of people with severe heart valve regurgitation are still alive 5 years later while 80-95% of people with mild to moderate regurgitation are alive after 10 years. That doesn’t mean that’s how long you have to live. It just means those percentages of people were still alive and living beyond those timeframes when followed up with.
It also says people 65 and under who undergo a valve replacement have on average 16 years of life expectancy. You caught your disease early on it sounds like, so I feel like you’re ahead of the game in terms of monitoring it’s progress. I’d get the annual checkups and see how fast it seems to be progressing. Could be slow as molasses. I don’t know how old you are, but if your disease progresses slowly, it could be years and years before it’s bad enough for a valve replacement, and then after that you’ve got ~16 more years. You could still be looking at decades of life.
Hey man. Definitely want to find a cardiologist (shinzousenmon-i) 心臓専門医).
From a person with a potentially terminal chronic condition myself (started off grave, but ended up a lot better than initially expected), it is essential to make sure you have the support at first to get through any grieving or existential crisis.
But if your condition is moderate than you can very much live a normal life. Watch your blood pressure closely and take meds if need be to keep that optimized. Japanese love their salt, but do what you can to minimize that as salt very easily spikes your blood pressure.
In terms of physical exercise, from what I understand with moderate AVR you can do a moderate amount of exercise and it will go a long way in keeping your cardiovascular system optimized, but always follow your doctor’s advice on that.
And lastly, ‘letting go of all things out of your control’ became something I really started trying to internalize. It’s so easy to trip over yourself with predictions and worries about how things are going to go, but that is time taken away from the right now.
Regardless, I wish you well on your journey through this. You can always PM me if you need to vent or have questions.
I know of 2 people who recommend this clinic highly if you speak Japanese. I’m not sure what tests you need exactly but I would call and ask.
I had my heart checked top to bottom here and did bloodwork and everything. I can’t recommend them enough, assuming they can do what you need.
https://taniguchi-c.jp
Taniguchi Clinic
06-6776-5580
https://g.co/kgs/pD2pyw
If you go to a good heart doctor in a major hospital, they will give your heart and arteries a good check. They can also see things in a CT that an echo can’t pick up. If you get a 紹介状 you get in easily and a heart CT scan is not as expensive as the alternative.