[quick question]

Author: Bryan Lombardo (---.bos.east.verizon.net)

Date: 08-09-02 18:40

I just have a quick question. Can HCM improve as stated to me by Social Security or can you just basiclly just stabelize it?

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[Re: quick question]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-10-02 03:51

Dear Bryan

You can be in a bad way and your myectomy or ablation can make a world of difference --that is true, but HCM just doesn't get better like a broken bone will get better --it is a genetic condition that causes the heart muscle to be disorganized as well as too thick in spots. Rarely (very rarely) someone's hypertrophy will go down, but that doesn't always make you feel better and still doesn't address the entire problem.

I would like to see the data that SS is using to tell you that HCM can improve. What exactly do they mean by that? Medication and surgery can alleviate symptoms, but there is no cure and there is no way to change the molecular structure of the heart muscle, so I'm very curious as to what they are talking about.

That being said, most HCM patients live a full life span and can live a mostly normal life and everyone has their ups and downs with episodes and tweaking medications and so on --is that what they mean?

Sarah

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[Re: quick question]

Author: Bryan Lombardo (---.bos.east.verizon.net)

Date: 08-10-02 10:42

I think, not sure, they mean because I have an ICD implanted.

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[Re: quick question]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-10-02 11:17

Dear Bryan

An ICD simply shocks the heart back to normal when it gets out set parameters. It has no ability to change the heart structure. If you have a pacemaker-ICD combo, then this keeps your heart beating a specific way, which will be better for you, but doesn't make the HCM go away either. I'm still confused. Sorry.

Sarah

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[Re: quick question]

Author: Bryan Lombardo (---.bos.east.verizon.net)

Date: 08-10-02 11:30

Im confused also.. IM going to a specialist At Tufts (New England Medical Center) Sept.18th thanks to Lisa, So we will see. I have had the Pacemaker ICD combo for 9 years, im 25 now. Ive been followed for my ICD at Mass General, and I fell very comfortable there. They dont follow me for my cadiac check-ups, just the ICD. My cardiologists are at both Childrens and Brighams and Womens. In someones own opinion is this something Id be able to continue to do or is the specialist gonna want me to have everything done through him? Does this make sense???

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[Re: quick question]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 08-10-02 12:01

Dear Bryan

When the specialist is far away and you have a local cardiologist, you can have them hook up and have the local team take their cues from the specialist. So you would have your routine care and checkups close to home and have the doctors relay all the info to the specialists and see the specialists for big procedures and/or once a year and so on.

We do this all the time and if the doctors balk --then you should be concerned as egos may be getting in the way of patient care (I have had this problem personally and I don't see that local team anymore for that and other reasons, but I did find someone else local who is good about it.)

Sarah