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  • family history and diagnosis

    [family history and diagnosis]

    Author: Bel (---.excel.net)

    Date: 06-25-02 13:48

    Hi,

    I have a family history (Mom, brother and two nieces) of HCM and as I was getting a check-up, my doctor strongly advised me(because of the family history) to have myself checked for the disease also. At the moment I am working towards finding the right dosage of synthetic thyroid hormone for the hypothyroidism that was diagnosed with that check-up. My doctor recommended a stress echo. As I am a bit familiar with the disease from Mom and brother, I called around to some of the doctors in the Madison, WI area that have been treating my family. They said they would do an echo,but definately NOT a stress test of any sort. However, when my Mom started having symptoms (in her 50's) they couldn't find anything with the first echo they did and only figured it out with a doppler echo. I'm concerned about what type of test to have, (they're kinda pricey ya know)and what effect that test will have on my ability (not to mention my son's ability -when he's old enough ) to obtain health and life insurance. (Not to mention that it's kind of scary all around. Thanks for any advice you can give on which test to have. Also, as one of the long term symptoms of hypothyroidism is deterioration of the heart one of the main problems of this disease is enlarged heart muscle, if I have it, would the two things be likely to cancel each other out? (just a little light humor there-I'm not seriously considering not treating the hypothyroidism)

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    [Re: family history and diagnosis]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-25-02 16:38

    Dear Bel

    Well, my first concern is that whoever has been treating your mom should have insisted on having all of her children screened right from the beginning. If you have other siblings, they should be screened (after they get insurance).

    Please call the HCMA to get the name of an HCM specialist for you to see. You can't get any kind of echo without seeing a doctor first, so you may as well see one who is going to know what kind of echo to give you. (the office is 973-983-7429.)

    You should definitely get health and life insurance for you and your son RIGHT NOW as HCM is an automatic decline for indpendant insurance of any kind.

    a lot of people with HCM have hypothyroidism as well, by the way.

    I know it is all very scary at first, but most HCM patients live a full life span and just need medication or sometimes a procedure.

    The board here is very helpful and please ask away. Also, reading some of the other threads may answer a lot of questions for you.

    take care,

    Sarah

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    [Re: family history and diagnosis]

    Author: Bel (---.excel.net)

    Date: 06-25-02 22:27

    Thanks Sarah.

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

    [Re: family history and diagnosis]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-25-02 22:36

    Bel

    anytime....

    hang in there.

    sarah

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    [Re: family history and diagnosis]

    Author: Bel (---.excel.net)

    Date: 06-26-02 14:13

    Thanks again and just to let you know, Mom didn't show any symptoms until her 60's(about 1-2 years ago). She did make a point of telling us and her brothers and sisters that they should all be tested. Either my brother's doctor didn't say anything to him (as he was diagnosed much earlier) or he chose not to tell us. (I suspect the latter as he probably thought it may have been collateral damage from some medications he is(or has been) on for another condition.) The older niece has been having tachycardia problems , and the younger niece is only 3. Most of the family history stuff has only been coming together for the last few years and there's always something else that seems more important than finding out you have a possibly fatal condition that doesn't seem to have a real effective treatment strategy and could have nasty ramifications for one's children. (insurance-wise)

    So, you must be doing a good job because my Mom's doctor and mine and my sister's family doctor all said the get tested now and your family too.

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

    [Re: family history and diagnosis]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-26-02 17:42

    Dear Bel

    Don't forget to line up that insurance before you get tested and also know that most people with HCM live a full life span. If you read this board, there are a lot of people here who have greatly improved after an ablation or a myectomy or even with just medication. Every case is different, even within families, so it is important to find out exactly what you have (septal wall measurements, outflow gradients, location of hypertrophy, etc) and that way your doctor and you can develop a custom treatment plan for you. And the HCMA will always share its knowledge and experience with you, not to mention support.

    take care

    Sarah

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    [Re: family history and diagnosis]

    Author: Bel (---.excel.net)

    Date: 06-26-02 22:44

    My husband and I have had life insurance for some time already, and we have family coverage for healthinsurance through my husband's job. What kind of life insurance do we get for a ten year old? Should we be getting independent health insurance besides what is provided through his employer? He works in IT and has changed jobs a bit.Any advice?

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

    [Re: family history and diagnosis]

    Author: Board Moderator--Sarah Beckley (---.dsl.mindspring.com)

    Date: 06-27-02 13:24

    Dear Bel

    When I worked for Northwestern Mutual Life, they recommended that you have life insurance in an amount about 5-7 times your annual salary. Life insurance through work is usually just the salary unless you max it out and sometimes those policies are portable, that is you can start paying the premium yourself if your husband leaves the company. You with have to check with his HR office to confirm if both your policies are portable.

    You would have to talk to an insurance agent about life on your child. As for health insurance, since the Reform act in 1996, if you have had coverage for the previous 12 months and your husband changes jobs/insurance companies, they can't exclude your pre-existing condition. However, if you ever lost your husband (god forbid) or he lost his job, then you would be able to go onto COBRA for 18-36 months but after that you would either need a job that had health insurance or your own health insurance.

    Lisa is actually an HR Director in real life, so please give her a call as she can give you much better and more specific advice than mine, which is just an overview.

    take care

    Sarah

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

    [Re: family history and diagnosis]

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

    Date: 07-01-02 18:34

    Sarah - I like the way you worded that... in Lisa's Real Life

    Yes Bel, Sarah is right in my "real life" I am an HR director so any questions re health ins /FMLA/ADA/employment related stuff... feel free to toss my way, happy to help.

    Lisa

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

    [Re: family history and diagnosis]

    Author: Bel (---.excel.net)

    Date: 07-01-02 23:01

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