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hi all,
some of you will remember me--i am an infrequent contributor to the community here (as much as i treasure and appreciate the forums i'm the kind of person who obsesses unhealthily about my condition when i'm around a lot of talk about it).
just wanted to say a few things:
1. we're about 6 months into our move to boulder and so far the altitude doesn't seem to have bothered my hcm too much; i do have a theory though that the month or so adjustment period when we first got here might have been partly responsible for some of the increased a-fib that my last icd interrogation caught. mentioned this to my new cardiologist (more below) and he was intrigued--wants to see what the next interrogation reveals.
2. the big event for me is that i finally have a cardiologist here and he is GREAT. i'd talked to lisa about potential hcm specialists in the denver metro area and she wasn't aware of any. my doc, nelson trujillo of the rocky mountain cardiology group, is not a specialist but he is really up on the condition and the latest research. he also sees about 20 people in the area who have hcm (i'm going to ask him to tell them all about the hcma). more importantly he's also connected directly to an italian doctor at the university of colorado hospital who is apparently at the cutting edge of hcm genetics research. me, i'm glad my primary cardiologist, despite not being a specialist, knows more about hcm than i do (couldn't say the same about every doc i've talked to about this) and that he has no chip on his shoulder about what to do or where to send me should my condition ever get beyond his ability to treat. if you're in the boulder area--or know someone with hcm who is--i'd recommend dr. trujillo highly. he also has an amazing manner (good-humored and empathetic).
3. one of the things he wants me to try is to switch from toprol to atelonol. even though i'm not getting side-effects other than some light mental fuzziness and the standard vivid dreams. he says that toprol messes with the blood-brain barrier more than something like atelonol and that i should try switching and seeing if that works better for me. being a cheapskate i'm going to wait till my recently filled toprol prescription runs out first!
4. one last thing: he checked out my icd implant area. those of you who remember my story may recall that i'm not very happy with my implantation. either because it was not put in deep enough (i am skinny) or because i moved too much during recovery it sticks out a lot, and there's one corner in particular that juts out sharply--i can feel it anytime i have a heavy jacket on (yes, i live in colorado now) and also at other times. he said it was up to me but i certainly had grounds for wanting to get it revised. apparently since all they'd be doing is turning the thing around and placing the wires below the device (some moved and are now over the corner) the surgery would be even more minor than usual with minimal recovery time. i'm seriously considering doing this in a couple of months. i'd originally told myself that i would live with it till the first battery change but based on his body language when he saw it i get the feeling that the abnormality of my implant (and degree of daily discomfort) is above the norm. any opinions? has anyone had their implantation revised in this manner? dr. trujillo does the implants himself, and says he often works with a colleague who is a plastic surgeon to ensure optimal implantation and comfort.
anyway. that's rather a lot from someone who doesn't talk much. i do check the board once a week or so and it is always good to see the same names. i hope everyone is doing as well as can be reasonably expected. and keep in mind: there may be doctors on mars who can fix our hearts!
cheers!
mongo
some of you will remember me--i am an infrequent contributor to the community here (as much as i treasure and appreciate the forums i'm the kind of person who obsesses unhealthily about my condition when i'm around a lot of talk about it).
just wanted to say a few things:
1. we're about 6 months into our move to boulder and so far the altitude doesn't seem to have bothered my hcm too much; i do have a theory though that the month or so adjustment period when we first got here might have been partly responsible for some of the increased a-fib that my last icd interrogation caught. mentioned this to my new cardiologist (more below) and he was intrigued--wants to see what the next interrogation reveals.
2. the big event for me is that i finally have a cardiologist here and he is GREAT. i'd talked to lisa about potential hcm specialists in the denver metro area and she wasn't aware of any. my doc, nelson trujillo of the rocky mountain cardiology group, is not a specialist but he is really up on the condition and the latest research. he also sees about 20 people in the area who have hcm (i'm going to ask him to tell them all about the hcma). more importantly he's also connected directly to an italian doctor at the university of colorado hospital who is apparently at the cutting edge of hcm genetics research. me, i'm glad my primary cardiologist, despite not being a specialist, knows more about hcm than i do (couldn't say the same about every doc i've talked to about this) and that he has no chip on his shoulder about what to do or where to send me should my condition ever get beyond his ability to treat. if you're in the boulder area--or know someone with hcm who is--i'd recommend dr. trujillo highly. he also has an amazing manner (good-humored and empathetic).
3. one of the things he wants me to try is to switch from toprol to atelonol. even though i'm not getting side-effects other than some light mental fuzziness and the standard vivid dreams. he says that toprol messes with the blood-brain barrier more than something like atelonol and that i should try switching and seeing if that works better for me. being a cheapskate i'm going to wait till my recently filled toprol prescription runs out first!
4. one last thing: he checked out my icd implant area. those of you who remember my story may recall that i'm not very happy with my implantation. either because it was not put in deep enough (i am skinny) or because i moved too much during recovery it sticks out a lot, and there's one corner in particular that juts out sharply--i can feel it anytime i have a heavy jacket on (yes, i live in colorado now) and also at other times. he said it was up to me but i certainly had grounds for wanting to get it revised. apparently since all they'd be doing is turning the thing around and placing the wires below the device (some moved and are now over the corner) the surgery would be even more minor than usual with minimal recovery time. i'm seriously considering doing this in a couple of months. i'd originally told myself that i would live with it till the first battery change but based on his body language when he saw it i get the feeling that the abnormality of my implant (and degree of daily discomfort) is above the norm. any opinions? has anyone had their implantation revised in this manner? dr. trujillo does the implants himself, and says he often works with a colleague who is a plastic surgeon to ensure optimal implantation and comfort.
anyway. that's rather a lot from someone who doesn't talk much. i do check the board once a week or so and it is always good to see the same names. i hope everyone is doing as well as can be reasonably expected. and keep in mind: there may be doctors on mars who can fix our hearts!
cheers!
mongo
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