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[newhcmReply]
Author: Bobby (---.tnt1.corydon.in.da.uu.net)
Date: 12-22-02 15:30
my cardioligst said im not typical because of my age.He said most hcmers are young kids and teenagers. What he sees in me they usually see in older adults. I am evenly enlarged in my left atrium and left ventricle. My obstruction is in mid-cavity and not interfereing with the valves function. He said I'm not a candidate for an icd implant. injection fraction was good. heart function was good. good variant. He mentioned Dr. Maron at the Mayo clinic. And said I could go see him if i wanted to. As long if its just a 1 time thing and he told me not to let anybody talk me into getting an icd implant.He said he could give other meds for my premature beats and palpatations.But the side effects would be worse and my irregular rythm is nothing life thretening.but he sure can't convince me of that! Any way does a specialist cost more than a regular cardioligst? oh,just 1yr ago my hcm was holiday heart. I feel like a big crybaby Is there anyone out there that lives in southern Indiana Louisville area with hcm would like to talk.
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[Re: newhcmReply]
Author: Board Moderator (Sarah Beckley (---.client.attbi.com)
Date: 12-22-02 16:58
Dear Bobby,
Let me clarify a few things:
First, HCM is most often _diagnosed_ when you are in your teens and 20s, however, more and more adult onset cases are being found, along with the fact that many HCMers have it when young, but are not diagnosed till later. So you may have had HCM, but not known it.
"I am evenly enlarged in my left atrium and left ventricle." I am not sure what you mean here --is the cavity enlarged or the walls? Makes a very big difference. and if your walls are thick all the way around, then you may have concentric cardiomyopathy, which is ENTIRELY different from HCM and makes an even stronger case for you to see a specialist.
Dr. Maron is the medical advisor to the HCMA and he is at the Minneapolis Heart Institute.
I have NEVER heard of a doctor telling a patient that he was only allowed to see another doctor only one time. This is very disturbing to me and I doubt that that any specialist would find this a viable plan. Furthermore, Dr. Maron is one of the most respected doctors around and I don't think he got there by forcing ICDs on people who didn't need them.
You don't say if you are still in atrial fibrillation or not. If you _are_, then you need to know that long term afib enlarges the atria and increases your risk of heart attack and stroke. If you are not in afib, then the doctor makes some sense.
You should talk to your insurance company about seeing Dr. Maron, and talk to his office as they have people from out of state all the time and can answer a lot of your questions better than anyone here. Your cost depends on what kind of plan you have. But your life is worth the extra dough!!
take care,
Sarah
PS you can reply to this post by hitting "reply" --you don't have to hit "New Thread" each time.
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[Re: newhcmReply]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 12-22-02 17:33
Hi - seeing a specialist is a very very good idea. It appears from your posting that your doc is not up to date on HCM info and you could benefit from a vistit to a specialist.
Best wishes,
Lisa
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[Re: newhcmReply]
Author: Amy N. (---.tnt4.seymour.in.da.uu.net)
Date: 12-23-02 11:58
Bobby,
I'm located in southern Indiana. I live in Brownstown and work in Salem. Lisa hooked me up with a cardiologist in Indy through IU, but it sounds like you need to see a specailist. My family is doing well and I consider it lucky that we even found out that we have hcm. My son and father also have it. My son will be 2 in January. My father is almost 58 and was just diagnosed officially a few weeks ago.
Feel free to e-mail me.
Amy N.
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[Re: newhcmReply]
Author: Bobby (---.tnt2.corydon.in.da.uu.net)
Date: 12-23-02 12:03
Dear Sarah I don't know what he meant by evenly enlarge either. I assumed it meant that in hcm it's not evenly enlarged.That it's enlarged in some places.I don't know they did a tee to determine it. No I am not in afib they cardioverted me using 200joules. And they said it was a success.
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[Re: newhcmReply]
Author: Board Moderator (Sarah Beckley (---.client.attbi.com)
Date: 12-23-02 12:39
Dear Bobby,
They do a TEE to make sure there aren't any blood clots in your heart before they cardiovert you. I'm glad it was successful. Everyone's heart with HCM is a little different. I would ask for a copy of the TEE report.
And please call Lisa to talk to her about your situation. I have seen over a dozen doctors in my life and none of them have ever sounded as off-the-wall as yours does.
S
Author: Bobby (---.tnt1.corydon.in.da.uu.net)
Date: 12-22-02 15:30
my cardioligst said im not typical because of my age.He said most hcmers are young kids and teenagers. What he sees in me they usually see in older adults. I am evenly enlarged in my left atrium and left ventricle. My obstruction is in mid-cavity and not interfereing with the valves function. He said I'm not a candidate for an icd implant. injection fraction was good. heart function was good. good variant. He mentioned Dr. Maron at the Mayo clinic. And said I could go see him if i wanted to. As long if its just a 1 time thing and he told me not to let anybody talk me into getting an icd implant.He said he could give other meds for my premature beats and palpatations.But the side effects would be worse and my irregular rythm is nothing life thretening.but he sure can't convince me of that! Any way does a specialist cost more than a regular cardioligst? oh,just 1yr ago my hcm was holiday heart. I feel like a big crybaby Is there anyone out there that lives in southern Indiana Louisville area with hcm would like to talk.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: newhcmReply]
Author: Board Moderator (Sarah Beckley (---.client.attbi.com)
Date: 12-22-02 16:58
Dear Bobby,
Let me clarify a few things:
First, HCM is most often _diagnosed_ when you are in your teens and 20s, however, more and more adult onset cases are being found, along with the fact that many HCMers have it when young, but are not diagnosed till later. So you may have had HCM, but not known it.
"I am evenly enlarged in my left atrium and left ventricle." I am not sure what you mean here --is the cavity enlarged or the walls? Makes a very big difference. and if your walls are thick all the way around, then you may have concentric cardiomyopathy, which is ENTIRELY different from HCM and makes an even stronger case for you to see a specialist.
Dr. Maron is the medical advisor to the HCMA and he is at the Minneapolis Heart Institute.
I have NEVER heard of a doctor telling a patient that he was only allowed to see another doctor only one time. This is very disturbing to me and I doubt that that any specialist would find this a viable plan. Furthermore, Dr. Maron is one of the most respected doctors around and I don't think he got there by forcing ICDs on people who didn't need them.
You don't say if you are still in atrial fibrillation or not. If you _are_, then you need to know that long term afib enlarges the atria and increases your risk of heart attack and stroke. If you are not in afib, then the doctor makes some sense.
You should talk to your insurance company about seeing Dr. Maron, and talk to his office as they have people from out of state all the time and can answer a lot of your questions better than anyone here. Your cost depends on what kind of plan you have. But your life is worth the extra dough!!
take care,
Sarah
PS you can reply to this post by hitting "reply" --you don't have to hit "New Thread" each time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: newhcmReply]
Author: Lisa Salberg (---.dyn.optonline.net)
Date: 12-22-02 17:33
Hi - seeing a specialist is a very very good idea. It appears from your posting that your doc is not up to date on HCM info and you could benefit from a vistit to a specialist.
Best wishes,
Lisa
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: newhcmReply]
Author: Amy N. (---.tnt4.seymour.in.da.uu.net)
Date: 12-23-02 11:58
Bobby,
I'm located in southern Indiana. I live in Brownstown and work in Salem. Lisa hooked me up with a cardiologist in Indy through IU, but it sounds like you need to see a specailist. My family is doing well and I consider it lucky that we even found out that we have hcm. My son and father also have it. My son will be 2 in January. My father is almost 58 and was just diagnosed officially a few weeks ago.
Feel free to e-mail me.
Amy N.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: newhcmReply]
Author: Bobby (---.tnt2.corydon.in.da.uu.net)
Date: 12-23-02 12:03
Dear Sarah I don't know what he meant by evenly enlarge either. I assumed it meant that in hcm it's not evenly enlarged.That it's enlarged in some places.I don't know they did a tee to determine it. No I am not in afib they cardioverted me using 200joules. And they said it was a success.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: newhcmReply]
Author: Board Moderator (Sarah Beckley (---.client.attbi.com)
Date: 12-23-02 12:39
Dear Bobby,
They do a TEE to make sure there aren't any blood clots in your heart before they cardiovert you. I'm glad it was successful. Everyone's heart with HCM is a little different. I would ask for a copy of the TEE report.
And please call Lisa to talk to her about your situation. I have seen over a dozen doctors in my life and none of them have ever sounded as off-the-wall as yours does.
S
