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  • heart murmurs

    [heart murmurs]

    Author: Debbie (---.glen-net.ca)

    Date: 05-27-02 09:16

    I was wondering if anyone's children have heart murmurs but do not have hocm? We are on a very long waiting list for our sons echo's, and are hoping that their heart murmurs may be the kind not to worry about as we were told by their dr. My husband was diagnosed 6 wks ago. Thanks for any info.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 05-27-02 11:15

    Dear Debbie,

    If there is a diagnosis of hypertrophic cardiomyopathy within the family and your children have an audible murmur the chances are very strong that it would also be hypertrophic cardiomyopathy. However, there was always a chance that the murmur is from some other origin. How old are your children? And when are they scheduled for an echocardiogram?

    As your husband was only diagnosticed a weeks ago I am sure that this is a very difficult time for your entire family. You must except that there is a period of time in which you all must give yourself to adjust to your new situation. But please to remember that hypertrophic cardiomyopathy is compatible with normal life and in order to live in normal life he must learn how to deal with the condition. And I am very glad to have found our web site that are participating in our message board and I am sure you'll find support and information here that will assist you.

    Should you need personal assistance please not hesitate to contact HCMA office.

    Best wishes,

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Debbie (---.glen-net.ca)

    Date: 05-27-02 11:40

    Thanks for replying. My husband was diagnosed about 6 wks ago and yes this has been a very difficult time. Our boys are 6 and 8 and one son is very athletic while the other son just never seemed to have the energy for sports although he is playing soccer. They are on a waiting list of 6 months min. Their dr. made the referral for me after much discussion on my part, but he put them down as elective that is why the wait is very long. I called this morning to ask my husband's cardiologist to please make the referral and maybe he could speed things up for us.

    Thanks again for any info, Debbie

    Also, we live in Canada, do you think the waiting list would be as long if we travelled to the states? We would not have any medical coverage but are willing to pay the cost of an echo.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Debbie (---.glen-net.ca)

    Date: 05-27-02 11:40

    Thanks for replying. My husband was diagnosed about 6 wks ago and yes this has been a very difficult time. Our boys are 6 and 8 and one son is very athletic while the other son just never seemed to have the energy for sports although he is playing soccer. They are on a waiting list of 6 months min. Their dr. made the referral for me after much discussion on my part, but he put them down as elective that is why the wait is very long. I called this morning to ask my husband's cardiologist to please make the referral and maybe he could speed things up for us.

    Thanks again for any info, Debbie

    Also, we live in Canada, do you think the waiting list would be as long if we travelled to the states? We would not have any medical coverage but are willing to pay the cost of an echo.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: sarah beckley -moderator (---.dsl.mindspring.com)

    Date: 05-27-02 12:03

    Dear Debbie

    You can call the HCMA office at 973-983-7429 to get the names of any HCM specialists in the US who may be reasonably near you. Some doctors here are easier to see than others. Some may make room in their schedule to see you immediately for someone in your situation and others may not. Typically, you would only have to wait two weeks to see a doctor here. However, some may have a 4-6 week wait if they are very popular and book up. You will need a doctor to order the echo.

    In terms of paying for an echo, I know that when my brother told them that he was "self-pay" (paying in cash/check on the spot himself) they cut the price substantially (I think in his case from 1,000 to 500 dollars US). Be sure to talk to them about that if you are able to get one right away.

    best of luck and keep us posted,

    sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Sherry (---.ras11.floca.tii-dial.net)

    Date: 05-27-02 13:22

    Debbie,

    Depending on where you go in the states, depends on the length of time. When my husband was diagnosed 14 months ago, it only took 3-4 weeks to get my children into see a Pediatric Cardiologist. They did an EKG, ECHO, and we spoke to a Genetic counselor.

    My youngest boy is almost 6, he was diagnosed with a murmur at 6 months of age. At this time he has been cleared of HCM. His next screening is next month. Just make sure that the doctor you take the boys to has info on HCM. Otherwise get a copy of the EKG and ECHO's forwarded to a specialist. Best of luck with yor family.

    Sherry

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Glen (---.com)

    Date: 05-27-02 13:56

    Debbie, where in Canada are you?

    I am close to Toronto, so I see an HCM specialist named Dr Wigle at the Toronto General Hospital/University.

    He will only see you thru a referal from you own doctor.

    But on my last visit they scheduled an ECHO to be done within a month of my visit and I believe it could have been done quicker.

    I guess with him being right in the Cardiac center at the hospital he can get it done quicker.

    If your near Toronto it maybe worth a referal from your doctor, he has been an HCM specialist for 40 years, I have been seeing him for 30 and he is very good.

    I wish your hubby and kids good luck.

    Glen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Debbie (---.glen-net.ca)

    Date: 05-27-02 15:08

    Thanks for all the replies. We live 1 hour from Ottawa. My husband is being seen and the Ottawa heart inst. His dr. called back and said that they will do the echo's there for the boys since it may be sooner than at the cheo(childrens hosp. of eastern Ontario). They will call me back with a date.

    thanks again

    Debbie

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: heart murmurs]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 05-27-02 19:28

    Debbie,

    I am glad to hear the kids will be screened soon. Please understand that if the children screen clear at this time they must be rescreened at least every 18 months once they have reached puberty. Best of luck to all!

    Lisa
    NOTE: This is a post from the previous forum message board.
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