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Newly Diagnosed IHSS


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  • Newly Diagnosed IHSS

    [Newly Diagnosed IHSS]

    Author: Art W. Simonetti (---.

    Date: 09-20-02 14:41

    I am a healthy 44yo male whose father died suddenly and unexpectedly of a heart attack (Ischemic heart disease). I went to my primary doctor to have my symptoms evaluated, since they have been getting worse over the last 6 months. My symptoms are (upon physical exertion) profuse sweating, chest palpitations, and lightheaded/dizzyiness almost to the point of passing out or fainting. Normally, I could focus and convert my fast heart rate through techniques i learned through Lamaze training many years ago. There is validity in controlling your breathing to manage pain, as I'm living proof. I was scheduled for stress echo test and that was the last time my life was "simple."

    When I laid on the exam table on my left side, the technician place the sensor on my chest to evaluate and to take measurements of my heart. I didn't understand why they thought the machine needed to be re-calibrated, but they reset it and the number 209 came up again. Finally, after a few more people came into the room, the questions started. I was told that i have IHSS and that it is serious. Of course, saying very, very, very serious, didn't help. It was explanined to me this way: people who have this uncommon disease have a gradient pressure in thier heart, 20 being a low, 40 being moderate and 50+ being a severe case. Mine was 209 at rest and when I was aske to "push or bear down" it spiked up to 450. The stress echo test was cancelled and I was started on Toprol 100mg once/daily.

    I was certainly shocked to hear the news and what do you you do next??? Yes, I got my Will completed, looked at my mother's "estate" (as I am her primary care giver since here blindness 2 years ago). I told my family and am still waiting to hear about my brother and son's doctor's appointment for their evaluation. My daughter is negative for IHSS.

    I had a cardiac catheterization done last week and it showed Coronary Artery Disease (CAD) and the gradient measured 54 at rest and 182 after PVC inroduction (after introducing an extra heartbeat). I was told to double the dosage of Toprol to 100mg BID. I asked to be physically challenged on the treadmill, to ensure that the beta-blocker (Toprol) was effective. I was able to endure the entire 8 minute test up to level 4. My pulse went from 50 at rest to 120 in less than 15 seconds. My BP continuing to climb, from 106/70 to peaking at 250/150 during exertion. I did show some PVC and PAC activity on the monitor, so Verelan PM 100 mg one at bedtime was started.

    I was taking 82mg of Aspirin daily and that has increased to 325mg BID (twice/day). We have discussed Coumadin therapy, but not started as of yet.

    I feel very fortunate to still be alive and around, quite frankly. It seems to me like I have not had enough time to finish somethiing I was working on, or I need to be here longer for some reason. I knew something wasn't right with me, I just didn't know the severity. You see, I have always been a heavy person and as a child, I was told over and over that fat people put an "extra strain" on thier heart, so I thought when I lost weight, it would get easier for me. It did not.

    I know that my current treatment is to minimize the risk of sudden death, to supress the arrythmias, to slow the heart rate down, to lower my BP (which I have never had a documented problem with ever) and to allow my heart to fill and refill better with each beat. Yes, I also have a mitral valve prolapse and mild/severe regurgitation, as well. So I have no lack of confidence in my treatment plan thus far, however, what can be done to "correct" my problem? I know that my cardiologist (one of 15 in the practice) has only had 2 cases of IHSS, so she admits that she is not an "expert." Is there any specialists in the Tampa Bay area of Florida that I can see? I was told that there is quite a bit of work being done in Houston, but that is all I know thus far. I am beginning here to research IHSS and trying to find options. Any help, suggestions or recommendations are welcome.


    [Re: Newly Diagnosed IHSS]

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

    Date: 09-20-02 15:36

    Dear Art,

    I'm glad you found us. We all know how scary this can be. Please read the "About HCM" section of this web site and call the HCMA office at 973-983-7429 to get on the mailing list and to order the Patient's Guide to HCM (if you want --but it is a great book that explains a lot.)

    You absolutely need to see a specialist and by calling the office, Lisa can help you decide where to go. There are several specialists on the Eastern seaboard to choose from.

    Since you have sudden death in the family you need to be evaluated for an implantable defbrillator-cardioverter asap. Please read all the old posts here about ICDs for more info about them. They save lives and it sounds like you may be a candidate from what you wrote.

    Hang in there and call the office today!



    [Re: Newly Diagnosed IHSS]

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

    Date: 09-22-02 13:28

    Well Hello Art...

    You should be evaluated by an HCM specialist...sooner than later. YOu need to discuss your opions for reduction of thism gradient and protection from sudden death. Call the HCMA office and we will set up a time to talk.

    Best wishes,

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