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IHSS--or HCM

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CassandraAK Find out more about CassandraAK
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  • CassandraAK
    replied
    Re: IHSS--or HCM

    Lisa, i have one more question in regards to our conversation.

    Is it ok when I get the results to my husband echo to fax it to you?

    Leave a comment:


  • Reenie
    replied
    Re: IHSS--or HCM

    Originally posted by CassandraAK
    Hi Reenie,

    Thanks for your suggestion on echo lingo, but i have tried to search it and come up with a multitude of posts, any suggestion to narrow this down?

    Cassandra
    Hi Cassandra. The particular thread I'm talking about is titled echo lingo, I think. Here it is.
    http://www.4hcm.org/phpBB2/viewtopic...ght=echo+lingo

    Hope this helps.

    Reenie

    Leave a comment:


  • CassandraAK
    replied
    Re: IHSS--or HCM

    Lisa,
    No hurry, I was just curious. Don't make that extra effort just for me. I will check early part of next week to see what you thought.

    Thanks again,
    Cassandra

    Leave a comment:


  • Lisa Salberg
    replied
    Re: IHSS--or HCM

    I have not been in the office since then... I am a workaholic I am at home now... I will stop in the office in the morining and check.

    Be well!
    Lisa

    Leave a comment:


  • CassandraAK
    replied
    Re: IHSS--or HCM

    Lisa,

    Thanks, makes me feel better ! By the way, did u get the copy of the echo I faxed to you Thursday??

    Cassandra

    Leave a comment:


  • Lisa Salberg
    replied
    Re: IHSS--or HCM

    Re echos- Many people have "SOMETHING" "wrong" with there hearts on echo - a little leak in a valve, something larger or smaller than "normal" but in the overwhelming majority of cases these issues are minor and have no adverse affects on the person. AKA dont worry so much mom .


    Best wishes,
    Lisa

    Leave a comment:


  • CassandraAK
    replied
    Re: IHSS--or HCM

    Hi everyone,

    As I said in an earlier post, I did receive the results of the echo and ekg on my 18 y.o. daughter who is having SOB at sleep and some other symptoms. The echo conclusion by the physician that read it, is normal, but I have some questions about it and have forwarded a copy to Lisa to look at. I have read this thing over and over, and also this site and also looked at the Cleveland Clinic site on HCM topic, and at this point sort of can make sense of it all, and sort of not .

    At the end of the report the physician said, "there is physioligic tricuspid regurgitation". I think that was the only abnormality noted, but have never been told that any physician had noticed a heart murmur, which I am thinking this word means. I have noticed in the documents, it could be a sign of HCM, so that leaves me a bit uneasy .

    I feel like such a nervous nelly but considering the the history in my husbands family, and my daughters current symptoms, I have to be absolutely sure that all the T's are crossed and I's are dotted.

    I live in West Michigan, and work in the health care field, and quite honestly, with my own personal experiences and the local physicians, I don't have much confidence in them. I have always found that persistance and self education are the best qualities any person can have when it comes to being knowledgable about ones health.

    I really do appreciate this site, and all of you wonderful people who are willing to share and encourage one another.

    Cassandra

    Leave a comment:


  • CassandraAK
    replied
    Re: IHSS--or HCM

    Hi Reenie,

    Thanks for your suggestion on echo lingo, but i have tried to search it and come up with a multitude of posts, any suggestion to narrow this down?

    Cassandra

    Leave a comment:


  • Lisa Salberg
    replied
    Re: IHSS--or HCM

    Yes, the 15 yr old should be retested.

    Be well!
    Lisa

    Leave a comment:


  • Reenie
    replied
    Re: IHSS--or HCM

    This is what I would do. Get your own copy of the echo report, measurements and all. You can look at the measurements and see if there is something odd about it. Do a search for a post called Echo Lingo and it has good information in it or you can post measurements here and we'll try to help you. Also, ask your PCM who actually read the echo.

    Reenie

    Leave a comment:


  • CassandraAK
    replied
    Re: IHSS--or HCM

    thinking on this a bit more, what do you all think? Should she still have a cardiac consult reviewing initial echo and present one, or what?

    Leave a comment:


  • CassandraAK
    replied
    Hcm

    Hi everyone
    Well, I called the doctors office yesterday and they advised me that the test results were negative. This is my family physician, and I am not sure if I should have a cardiologist look at it, or if they should do some comparison with Ashley's original echo which was done 11 years ago. I am thinking that a cardiologist read it, but not sure if they know the history and what they should be looking at. I do think that they would notice any abnormalities though, regardless of comparison or history.

    Thanks for all of your encouraging words and advice. The sites were very informative also. My husband is going for his testing soon, so thats just one more thing to get through, and then I suppose I should have my 15 year old son retested.

    Cassandra

    Leave a comment:


  • Sarah
    replied
    Re: IHSS--or HCM

    i just wanted to add that the reason why the HCM heart "shorts out" is because the muscle tissue is disorganized instead of smooth --this is also part of why it is thick-- so it is harder to keep the electrical signals traveling correctly.

    while thicker hearts are at higher risk than thinner, as far as i know, there is not a _direct_ correlation between wall thickness and death rates. lisa, any word on that?

    s

    Leave a comment:


  • Lisa Salberg
    replied
    Re: IHSS--or HCM

    You have received some great information from the postings above. Please read: http://www.enewsbuilder.net/hypertro...ffNT7,a1gC3wDM
    [url]
    There is an article with the consensus document that will clearly state when you should be screened. The posting above from Reenie was very clear, however if your doctor would like to see the guidelines you can print them out for him.

    Best wishes,
    lisa

    Leave a comment:


  • Sarah
    replied
    Re: IHSS--or HCM

    c

    the short answer is that what causes sudden death in HCM is an electrical short circuit and the ICD is a little ecg machine in your chest that watches for the arrthythmia all the time. if and/or when a potentially fatal one pops up, the ICD sends an electrical shock to the heart, which stops the arrhythmia and forces the heart to restart with a nice, safe rhythm. think of it as rebooting the computer when it freezes.

    this happens in a matter of seconds, which is why the survival rate is massively (like 90%? i think) better than if you had to wait for an ambulance, which may or may not even have a portable defibrillator on it.

    you don't die b/c the heart chambers were too small --people usually get myectomies, ablations, or a new heart even, before that happens.

    s

    Leave a comment:

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