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[I.H.S.S]
Author: Connie (---.proxy.aol.com)
Date: 05-12-02 18:19
I WAS DIOGNOSED WITH IHSS ABOUT 11/2 YRS AGO. AT THE TIME MY CARDIOGLIST DID NOT TELL ME I HAD ANYTHING TO WORRY ABOUT. I WAS NEVER TOLD ANYTHING TO DO OR NOT DO, HE JUST DIDENT DETAIL IT MUCH. MARCH 4th 2002 MY HUSBAND HAD A HEART ATTACK, 45 YRS OLD AND IN SEEMINGLY GOOD SHAPE, ANOTHER CARDIOGLIST TREATED HIM AND WE WERE REALLY IMPRESSED WITH HIM. THE OTHER CARDIOLOGIST HAD MISSED HIS COMPLETE BLOCKAGE, SO I SWITCHED TO THE NEW DOCTOR ALSO. AT MY FIRST VISIT WITH THE NEW CARDIOLIGIST, (he had all my old echo's, ecg,ekg, heart cath ect...results from other office) HE WAS VERY ALARMED THAT I DIDENT KNOW ANYTHING ABOUT THE IHSS(idiopathic hypertrophic subaortic stenosis) THAT I HAD. ACCORDING TO HIM I AM WELL ADVANCED INTO THIS THING, I HAVE ALL THE HORRIBLE SYMPTOMS, CHEST PAIN, EXTRA HEARTBEAT, SWELLING ANKLES, MURMUR, ECT.........HE WENT OVER EVERYTHING WITH ME AND TOLD ME WHAT TO DO AND NOT TO, TAKE MY MEDS ECT.......
I HAVE A COUPLE OF QUESTIONS.....IHSS AND HYPERTROPHIC CARDIOMYOPATHY ARE ONE IN THE SAME ARENT THEY?
AND WHAT DO I HAVE TO LOOK FOWARD TO? THIS IS ALL SO NEW AND SCARY TO ME, I AM ONLY 40 YEARS OLD, MY MOM DIED SUDDENLY AT 59 OF WHAT WE THOUGHT WAS A SIMPLE HEART ATTACK AND HER FATHER ALSO. I HAVE TWO DAUGHTERS AND 2 SISTERS AND 1 BROTHER, ALL ARE BEING TESTED, MY BROTHER WAS NEG., MY OLDEST DAUGHTER WAS NEG. MY SISTERS HAVENT GOTTEN THE RESULTS BACK AMD MY 15 YR OLD DAUGHTER GOES THE 28th TO BE TESTED. MY LIFE IS CONSUMED BY THIS NOW...I THINK ABOUT THIS ALOT. PLEASE ADVISE...... CONNIE
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[Re: I.H.S.S]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-12-02 21:07
Dear Connie,
IHSS and HCM are the same, just different names, IHSS being older. One of the most important things to understand is that everyone's version of HCM is a little different. Also, when/if you read statistics on sudden death, understand that they have recently found those numbers to be too high from being skewed reporting (this means that people with HCM who don't die suddenly aren't getting counted in those stats). However, since your family has a history of early death, you should be evaluated for an implantable cardioverter-defibrillator (ICD). Most people live a long and full life with HCM (even with an ICD) and you can too.
Please call the HCMA office at 973-983-7429 to get the names of HCM specialists and to get on the mailing list. HCM is very misunderstood and you should see a specialist if you can.
Taking your medication, doing doctor-approved exercise like yoga, eating well and healthy and staying hydrated will go a long, long way to helping your heart.
The HCMA is a great resource. Please read the other posts in the message board as there is some helpful stuff in there. There is also a book the HCMA offers that is a patient's guide to everything you ought to know (call the office to order).
Please let us know how your daughter fares and post here as often as you want. Be sure to read the post on the annual meeting, if you can make it, it would be great for your family.
take care,
Sarah
Author: Connie (---.proxy.aol.com)
Date: 05-12-02 18:19
I WAS DIOGNOSED WITH IHSS ABOUT 11/2 YRS AGO. AT THE TIME MY CARDIOGLIST DID NOT TELL ME I HAD ANYTHING TO WORRY ABOUT. I WAS NEVER TOLD ANYTHING TO DO OR NOT DO, HE JUST DIDENT DETAIL IT MUCH. MARCH 4th 2002 MY HUSBAND HAD A HEART ATTACK, 45 YRS OLD AND IN SEEMINGLY GOOD SHAPE, ANOTHER CARDIOGLIST TREATED HIM AND WE WERE REALLY IMPRESSED WITH HIM. THE OTHER CARDIOLOGIST HAD MISSED HIS COMPLETE BLOCKAGE, SO I SWITCHED TO THE NEW DOCTOR ALSO. AT MY FIRST VISIT WITH THE NEW CARDIOLIGIST, (he had all my old echo's, ecg,ekg, heart cath ect...results from other office) HE WAS VERY ALARMED THAT I DIDENT KNOW ANYTHING ABOUT THE IHSS(idiopathic hypertrophic subaortic stenosis) THAT I HAD. ACCORDING TO HIM I AM WELL ADVANCED INTO THIS THING, I HAVE ALL THE HORRIBLE SYMPTOMS, CHEST PAIN, EXTRA HEARTBEAT, SWELLING ANKLES, MURMUR, ECT.........HE WENT OVER EVERYTHING WITH ME AND TOLD ME WHAT TO DO AND NOT TO, TAKE MY MEDS ECT.......
I HAVE A COUPLE OF QUESTIONS.....IHSS AND HYPERTROPHIC CARDIOMYOPATHY ARE ONE IN THE SAME ARENT THEY?
AND WHAT DO I HAVE TO LOOK FOWARD TO? THIS IS ALL SO NEW AND SCARY TO ME, I AM ONLY 40 YEARS OLD, MY MOM DIED SUDDENLY AT 59 OF WHAT WE THOUGHT WAS A SIMPLE HEART ATTACK AND HER FATHER ALSO. I HAVE TWO DAUGHTERS AND 2 SISTERS AND 1 BROTHER, ALL ARE BEING TESTED, MY BROTHER WAS NEG., MY OLDEST DAUGHTER WAS NEG. MY SISTERS HAVENT GOTTEN THE RESULTS BACK AMD MY 15 YR OLD DAUGHTER GOES THE 28th TO BE TESTED. MY LIFE IS CONSUMED BY THIS NOW...I THINK ABOUT THIS ALOT. PLEASE ADVISE...... CONNIE
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: I.H.S.S]
Author: s. beckley -moderator (---.dsl.mindspring.com)
Date: 05-12-02 21:07
Dear Connie,
IHSS and HCM are the same, just different names, IHSS being older. One of the most important things to understand is that everyone's version of HCM is a little different. Also, when/if you read statistics on sudden death, understand that they have recently found those numbers to be too high from being skewed reporting (this means that people with HCM who don't die suddenly aren't getting counted in those stats). However, since your family has a history of early death, you should be evaluated for an implantable cardioverter-defibrillator (ICD). Most people live a long and full life with HCM (even with an ICD) and you can too.
Please call the HCMA office at 973-983-7429 to get the names of HCM specialists and to get on the mailing list. HCM is very misunderstood and you should see a specialist if you can.
Taking your medication, doing doctor-approved exercise like yoga, eating well and healthy and staying hydrated will go a long, long way to helping your heart.
The HCMA is a great resource. Please read the other posts in the message board as there is some helpful stuff in there. There is also a book the HCMA offers that is a patient's guide to everything you ought to know (call the office to order).
Please let us know how your daughter fares and post here as often as you want. Be sure to read the post on the annual meeting, if you can make it, it would be great for your family.
take care,
Sarah