Tweet
[What should I be asking?]
Author: Carl (---.bwc.org)
Date: 05-12-02 04:43
Hello all,
Looks to be a very informed group here.
Background: Well a few months ago my GP was listening to my heart as part of my annual renewal of blood pressure medication. Asked, has anyone talked to you about a murmer? Well first I have every heard of that (age 44). Well this and that Echo etc. HCM with LV flow tract obstruction. Don't want to gloat but I don't seem to have any of the manifest problems. While I can't run up a hill (could stand to loss 30 lbs.) but am active and can walk 3 miles in an hour no problem. Been taking a Beta-Blocker for the blood pressure the last few years (found out that is good for this condition.) Still taking a number of test to evaluate my condition.
Question: What questions should I be asking?
Carl
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What should I be asking?]
Author: Bob (---.dyn.optonline.net)
Date: 05-12-02 20:39
Hi Carl,
I, too, have HCM with obstruction, and no symptoms. While absence of symptoms is something to be thankful for, it doesn't mean we are home free. Symptoms may arise at some future time, and even without them, changes may be taking place in the heart which should be monitored and possibly treated. For instance, the outflow obstruction, measured as a pressure gradient (do you know what yours is?), causes the heart to work harder, the workload being related to the level of pressure gradient. The degree of wall thickness, or hypertrophy is another important factor to be considered (were you told this measurement?). These and other factors are evaluated by the HCM specialist in determining the course of treatment. They also are used to determine your risk for sudden death. In my case, an implantable deffibrillator (ICD) with dual chamber pacing was recommended, and I followed that course. The pacing has virtually eliminated my obstruction (though this is frequently not the case), and the defibrillator is there in case an arrhythmia occurs. The best advice I can offer, as is mentioned so often on this board, is that you be evaluated by a recognized HCM specialist. If you aren't aware of who they are, contact the HCMA Office. Also, let me know if I can be of further help.
Good Luck,
Bob
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What should I be asking?]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-12-02 21:13
Dear Carl,
Welcome.
Please call the HCMA office at 973-983-7429 to get the name of an HCM specialist.
Your family should all be screened for HCM as it is a genetic disorder. Parents (if they are still here), siblings, and children.
You should also be evaluated for any risk of sudden death which is treated by the ICD Bob mentioned above. Most people live long healthy lives with HCM, but you don't want to skip this step for obvious reasons. Please see my response to Connie's IHSS post.
Take care,
Sarah
Author: Carl (---.bwc.org)
Date: 05-12-02 04:43
Hello all,
Looks to be a very informed group here.
Background: Well a few months ago my GP was listening to my heart as part of my annual renewal of blood pressure medication. Asked, has anyone talked to you about a murmer? Well first I have every heard of that (age 44). Well this and that Echo etc. HCM with LV flow tract obstruction. Don't want to gloat but I don't seem to have any of the manifest problems. While I can't run up a hill (could stand to loss 30 lbs.) but am active and can walk 3 miles in an hour no problem. Been taking a Beta-Blocker for the blood pressure the last few years (found out that is good for this condition.) Still taking a number of test to evaluate my condition.
Question: What questions should I be asking?
Carl
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What should I be asking?]
Author: Bob (---.dyn.optonline.net)
Date: 05-12-02 20:39
Hi Carl,
I, too, have HCM with obstruction, and no symptoms. While absence of symptoms is something to be thankful for, it doesn't mean we are home free. Symptoms may arise at some future time, and even without them, changes may be taking place in the heart which should be monitored and possibly treated. For instance, the outflow obstruction, measured as a pressure gradient (do you know what yours is?), causes the heart to work harder, the workload being related to the level of pressure gradient. The degree of wall thickness, or hypertrophy is another important factor to be considered (were you told this measurement?). These and other factors are evaluated by the HCM specialist in determining the course of treatment. They also are used to determine your risk for sudden death. In my case, an implantable deffibrillator (ICD) with dual chamber pacing was recommended, and I followed that course. The pacing has virtually eliminated my obstruction (though this is frequently not the case), and the defibrillator is there in case an arrhythmia occurs. The best advice I can offer, as is mentioned so often on this board, is that you be evaluated by a recognized HCM specialist. If you aren't aware of who they are, contact the HCMA Office. Also, let me know if I can be of further help.
Good Luck,
Bob
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: What should I be asking?]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-12-02 21:13
Dear Carl,
Welcome.
Please call the HCMA office at 973-983-7429 to get the name of an HCM specialist.
Your family should all be screened for HCM as it is a genetic disorder. Parents (if they are still here), siblings, and children.
You should also be evaluated for any risk of sudden death which is treated by the ICD Bob mentioned above. Most people live long healthy lives with HCM, but you don't want to skip this step for obvious reasons. Please see my response to Connie's IHSS post.
Take care,
Sarah