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hello everyone,
i am a brand new registrant. i've been reading the posts on the boards here for a few hours now and this truly seems like a great, supportive, informative community and i'm glad i found it (thanks to cynaburst's post on a different board). i look forward to being here a lot from now on!
here's my hcm history and then some questions (sorry for the long-windedness):
i am a 33 year old male. i've had a generally unremarkable medical history and while i've never been very fit i hadn't ever noticed any particular problems or limitations that might have been cardiovascular related. 5 years ago a doctor told me i had a heart murmur but he didn't make a big deal out of it. 3 years ago another hmo doctor told me she couldn't hear it at all. last year i went in for a regular check-up and my new doctor, bless his old-school heart, said that i had a murmur and while it was probably nothing it was best to get a chest x-ray. sure enough the x-ray indicated left ventricular enlargement. an ecg was also abnormal and so i went in for an echo which showed maximal wall thickness of 34 mm (my cardiologist opined that in reality the maximal thickness was probably anywhere between 25 and 35 mm--but i'm not sure what this is based on) without obstruction. i didn't have any symptoms worth mentioning--though i do get tired when i exercise, then again i am not very fit anyway. nor did i have any family history of sudden death or personal history of arrythmias. regardless, due to the degree of hypertrophy an icd was recommended and in pretty short order i got one. the surgery was fine, i recovered quickly enough and this is where i'm at now. i'm on 50 mg of toprol a day (as a propylactic measure) and don't have any ill-effects from it. i go this week for my first echo since i had the icd put in. hopefully, the hypertrophy will not have increased. (my understanding is that the enlargement happens at some point and then stabilizes.)
i've been seeing a cardiologist at usc university hospital in los angeles. i like my doctor but he isn't a specialist in hcm and there isn't anyone else there who is either. as a result, i don't know if i am armed with the best possible information. i've researched the condition extensively on my own online, and from what i can tell there is little to no specific predictability possible. as of now i have no obstruction, no symptoms, no sign of chf but there's no telling what the future may hold- correct?. the icd, hopefully, takes care of the sudden death possibility but indications also seem to be that people with hypertrophy of more than 30mm have lowered long-term outlooks (one study by spirito/maron seemed to indicate 50 years)--also correct? or has this connection changed recently? are there any statistics on what percentage of hcm people develop chf (with or without obstruction, connection to hypertrophy etc.) and so on? i should say my father likely has hcm as well (it was never diagnosed but an echo after my diagnosis revealed 1.5 mm thickness)--he's 62, an ex-fighter pilot and has never had any issues, but once again i realize this has no predictive good news for me.
if i can ask one more thing: what are the numbers, measurements etc. that any hcm patient should have readily at hand?
once again, i'm really glad to be a member of this community. i'm sorry for hitting you all with such a long first post and so many questions upon introduction but i do look forward to your replies and any information you can share with me.
cheers!
mongo
i am a brand new registrant. i've been reading the posts on the boards here for a few hours now and this truly seems like a great, supportive, informative community and i'm glad i found it (thanks to cynaburst's post on a different board). i look forward to being here a lot from now on!
here's my hcm history and then some questions (sorry for the long-windedness):
i am a 33 year old male. i've had a generally unremarkable medical history and while i've never been very fit i hadn't ever noticed any particular problems or limitations that might have been cardiovascular related. 5 years ago a doctor told me i had a heart murmur but he didn't make a big deal out of it. 3 years ago another hmo doctor told me she couldn't hear it at all. last year i went in for a regular check-up and my new doctor, bless his old-school heart, said that i had a murmur and while it was probably nothing it was best to get a chest x-ray. sure enough the x-ray indicated left ventricular enlargement. an ecg was also abnormal and so i went in for an echo which showed maximal wall thickness of 34 mm (my cardiologist opined that in reality the maximal thickness was probably anywhere between 25 and 35 mm--but i'm not sure what this is based on) without obstruction. i didn't have any symptoms worth mentioning--though i do get tired when i exercise, then again i am not very fit anyway. nor did i have any family history of sudden death or personal history of arrythmias. regardless, due to the degree of hypertrophy an icd was recommended and in pretty short order i got one. the surgery was fine, i recovered quickly enough and this is where i'm at now. i'm on 50 mg of toprol a day (as a propylactic measure) and don't have any ill-effects from it. i go this week for my first echo since i had the icd put in. hopefully, the hypertrophy will not have increased. (my understanding is that the enlargement happens at some point and then stabilizes.)
i've been seeing a cardiologist at usc university hospital in los angeles. i like my doctor but he isn't a specialist in hcm and there isn't anyone else there who is either. as a result, i don't know if i am armed with the best possible information. i've researched the condition extensively on my own online, and from what i can tell there is little to no specific predictability possible. as of now i have no obstruction, no symptoms, no sign of chf but there's no telling what the future may hold- correct?. the icd, hopefully, takes care of the sudden death possibility but indications also seem to be that people with hypertrophy of more than 30mm have lowered long-term outlooks (one study by spirito/maron seemed to indicate 50 years)--also correct? or has this connection changed recently? are there any statistics on what percentage of hcm people develop chf (with or without obstruction, connection to hypertrophy etc.) and so on? i should say my father likely has hcm as well (it was never diagnosed but an echo after my diagnosis revealed 1.5 mm thickness)--he's 62, an ex-fighter pilot and has never had any issues, but once again i realize this has no predictive good news for me.
if i can ask one more thing: what are the numbers, measurements etc. that any hcm patient should have readily at hand?
once again, i'm really glad to be a member of this community. i'm sorry for hitting you all with such a long first post and so many questions upon introduction but i do look forward to your replies and any information you can share with me.
cheers!
mongo
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