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  • scared!!

    [scared!!]

    Author: lisa (---.newtel.com)

    Date: 08-30-02 14:18

    To anyone who is listening,

    My husband got diagnosed with HCM just over a year ago. The cardiologist told us at that time that he was not symptomatic enough for treatment. Also, he has asthma; so, unfortunately, beta-blockers are out of the question. He has since become more symptomatic, and we are very scared (esp. given the fact that his drug options are restricted). We have talked about an internal defibrillator, but are unsure of the implications ( such as recovery time, physical limitations, and things to avoid...ie. cell phones, alarm systems and radio waves...all of which my husband encounters on a daily basis at work).

    We are attempting to start a family, and we want him to be around for any children we may have. He is having increasing numbers of palpitations and more shortness of breath. We are not in a position where he can stop working, and depending on the implications of having an ICD, he may have to at least change careers, which would be devastating to him! Any advice? Or comforting words!

    Thanks,

    lisa

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

    [Re: scared!!]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 08-30-02 15:29

    Dear Lisa

    WHOA, whoa, whoa. We need to slow down here. An ICD is a very serious step and there are other drugs besides beta-blockers. There are other treatments for obstruction, if your husband has that too.

    It sounds like you need to take a step back and make sure that your husband is getting the best medical advice that he can. An ICD will not relieve his symptoms, for example, and most people with an ICD are on some kind of medication to do that and to keep them in rhythm so that the ICD doesn't go off all the time.

    Please call the HCMA officea t 973-983-7429 to talk to Lisa Salberg and get the names of some HCM specialsts that you can see.

    A good cardiologist is not going to just stick an ICD in someone because they can't take a beta-blocker. THere is a lot more to HCM and to ICDs than that.

    ICDs are usually implanted if you have two or more of the following: a history of fainting, heart attack, ventricular tachycardia, and an incorrect blood pressure response to exercise and a family history of sudden death. Oh, and your septal wall is thicker than 3cm. If none of those criteria are met, your husband is not even a candidate. As for ICD and other cell phones, etc, etc, I don't there is as much of an interaction as you seem to think. zaplife.org has specifics on ICD restrictions.

    Don't put the cart before the horse, get hubby to an HCM specialist so he can get the correct treatment. He has options!

    take care

    Sarah

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    [Re: scared!!]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 08-30-02 16:19

    Lisa,

    Please get your husband to a specialist! That is first and foremost. And to address your concern about beta blockers...I also have asthma and I have been on beta blockers with some success. It depends on a lot of things: how severe the asthma is, how your body interacts with the medicine, etc. For me some beta blockers affected my asthma more than others. Like Sarah said, there is a lot more to treating HCM than beta blockers and ICD's. A specialist in the condition is where you will get all the answers. Please start there and don't jump to the conclusion that there isn't anything else that can be done to make his quality of life any better. You won't know how well he can be treated until you consult with the right doctor! Good luck.

    Reenie

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

    [Re: scared!!]

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

    Date: 08-31-02 10:27

    ONE step at a time here....

    1. Has your husband had a pulmonary function test to confirm his asthma? Many cases of those with HCM and Asthma...are not in fact asthma..the shortness of breath may be caused by the HCM...not Asthma - so first confirm this is really asthma.

    2.See an HCM specialist. - - He may have options that have not been discussed with him.

    3. ICD's are a big step and meant for those at high risk for sudden death...ICD's do notheing for symptoms.

    4. Call the HCMA...we will try to link you up with a specialist that best fits your needs.

    5....take a deep breath and know you are far from alone!

    Best wishes,

    Lisa

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

    [Re: scared!!]

    Author: Dave Johnson (---.lr.anc.net)

    Date: 09-02-02 13:52

    Lisa -

    I was originally MIS-diagnosed with asthma before they found my HCM - my shortness of breath was DUE to the HCM, and the asthma inhalers were actually exacerbating the problem. This may not be the case for everyone, but only a cardio specialist can really distinguish what's going on. No one questioned my asthma diagnosis b/c even the best doc's tend to automatically associate shortness of breath with ashtma and often don't look deeper.

    Because of my low blood pressure, I also have to be very careful about the amount of beta-blockers I take. There are alternative medicines I would ask about before doing something drastic like an ICD. I'm taking Disopyramide (aka Norpace), and I've been holding strong for 5 years and counting.

    I've said this elsewhere but let me stress - DO NOT trust a doctor to judge the severity of your husband's symptoms or his ability to work. You and your husband are best qualified to make those judgements. If he's having SOB on a regular basis - he IS symptomatic and steps should be taken to relieve such symptoms. My orginal cardiologist acted this way and I suffered for almost a year thinking I would have to 'just live with it.' Syptoms can be kept at a minimum with the right meds - it just takes a doctor who is willing to deal with the problem.

    As far as working - HCM patients should take everything into account. Is it a long walk from the parking lot to his office? Does he often have to use the stairs? Is he on his feet for long periods of time? Does he have to do any heavy lifing or a lot of bending, changing positions, etc? These are issues that doctors do not often consider, but they are crucial for HCM patients. My doctor told me to return to work and I couldn't even stay bent over long enough to tie my shoes at the time!

    They're not bad - they just don't get it sometimes. You and your husband need to assess your situation independent of the doctor's opinion when it comes to lifestyle and activity (or lack thereof).

    My advice - find a good specialist who will listen to these concerns - not just about the physical problems, but also regarding financial and work issues. Doctors letters are key to such things as disability compensation, which you may need to consider for the future. A good doctor will also help you by suggesting lifestyle changes that may be appropriate for his condition. I can't imagine anyone with HCM not having to make *some* lifestyle changes, even if only minor ones.

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

    [Re: scared!!]

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

    Date: 09-02-02 16:27

    Dave,

    Thanks for your responce..it was very well said!

    Best wishes,

    Lisa Salberg

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

    [Re: scared!!]

    Author: lisa (---.newtel.com)

    Date: 09-03-02 10:47

    Thank-you Sarah for your words of wisdom.You have opened my eyes to the fact that there are more options. We will follow your advice. Thanks again for being there!!!

    Lisa

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

    [Re: scared!!]

    Author: lisa (---.newtel.com)

    Date: 09-03-02 10:49

    Reenie,

    I thank-you for your reply.It is good to know that there are people out there in the same boat!

    Lisa

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

    [Re: scared!!]

    Author: lisa (---.newtel.com)

    Date: 09-03-02 10:52

    Everyone,

    I am so glad you all took the time to reply to my message. You have opened my eyes to the fact that we are not in this alone, and that we have more options. Thank you for being there!!!

    Lisa

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

    [Re: scared!!]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 09-04-02 10:13

    Dear Lisa

    Please let us know how you are both doing and have you talked to Lisa Salberg yet to find out about doctors and order the HCMA Patient's GUide to HCM (a must have)?

    take care, (and you are very welcome)

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

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