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I wanted to post what my experience at the doctor was like today to show the difference between my experience with a doctor that I shopped around for who knows about HCM, and the experience that many of you have when you go to the "regular" cardiologist.
Now, you should know as background that my doctor is the head of the echo lab at a major teaching hospital here in L.A., so he always brings in a cardiology fellow or two to examine me to learn about HCM, and in addition to treating me, he is also interested in teaching new doctors, so he does things not only for my benefit, but also in the interest of teaching.
The fellow examined me first, then the doctor does the dog and pony show and explains my murmur and what other things can be gleaned from my exam. They do a handheld echo every time he sees me when I don't have a full echo. I have a full echo probably twice a year, and see him twice a year for a follow up with a handheld. Then, he asks me about my symptoms, etc. and then we discuss my progress.
Then (pay attention, you all with children fighting for screenings!) He asks me about the last time my almost 3 year old son was screened. He was screened in utero by a fetal echo, and when he was 1 year old. He tells me that next time I come in and have an echo in December, I should bring my son, and he will do a brief echo on him just to make sure that all is ok. Now, my son isn't even due for a regular screening for another few years, and even that is optional since they aren't required until adolescence.
How cool is that? Now, I am sure that there is some scientific learning benefit for the students being able to follow an HCM family, seeing when it presents, etc. But mostly it benefits me. I am so grateful to have found this doctor. I just want to encourage those that haven't found the right doctor to keep looking, because it makes a HUGE difference. Even if your doctor isn't a HCM expert, one that is willing to learn and work with you makes such a big difference.
Back to work now for me. Just had to share.
Cynthia
Now, you should know as background that my doctor is the head of the echo lab at a major teaching hospital here in L.A., so he always brings in a cardiology fellow or two to examine me to learn about HCM, and in addition to treating me, he is also interested in teaching new doctors, so he does things not only for my benefit, but also in the interest of teaching.
The fellow examined me first, then the doctor does the dog and pony show and explains my murmur and what other things can be gleaned from my exam. They do a handheld echo every time he sees me when I don't have a full echo. I have a full echo probably twice a year, and see him twice a year for a follow up with a handheld. Then, he asks me about my symptoms, etc. and then we discuss my progress.
Then (pay attention, you all with children fighting for screenings!) He asks me about the last time my almost 3 year old son was screened. He was screened in utero by a fetal echo, and when he was 1 year old. He tells me that next time I come in and have an echo in December, I should bring my son, and he will do a brief echo on him just to make sure that all is ok. Now, my son isn't even due for a regular screening for another few years, and even that is optional since they aren't required until adolescence.
How cool is that? Now, I am sure that there is some scientific learning benefit for the students being able to follow an HCM family, seeing when it presents, etc. But mostly it benefits me. I am so grateful to have found this doctor. I just want to encourage those that haven't found the right doctor to keep looking, because it makes a HUGE difference. Even if your doctor isn't a HCM expert, one that is willing to learn and work with you makes such a big difference.
Back to work now for me. Just had to share.
Cynthia
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