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HCM rears it's ugly head again- I think!

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  • HCM rears it's ugly head again- I think!

    Not sure where to post this thread.
    I havn't posted in a while. I have been quietly lurking on occasion.
    I had a myectomy and valve replacement due to obstructive HCM and at the time contacted my family and extended family to get tested so they could meet this crap head on. I was dismissed as being an alarmist. I pushed harder and was mainly ignored.
    My daughter (27yrs old) listened and saw a cardiologist in NYC that said she was clear.
    I just received an email from her "had a heart attack this AM" "please have your surgeon send pre and post EKGs to my Drs office before surgery this Fri"
    Without getting too far into the ugly family details, after the divorce my daughters still live with their mom and don't communicate with me, except in this case with cryptic emails such as that.
    My younger daughter (25) has also been diagnosed with "heart problems(?) that are "not" HCM (passes out after meals, shortness of breath)

    This is tearing me up, I have no idea what could be going on or why my pre and post EKGs could/should be necessary for her surgery.
    HIPPA prevents me from getting any info from her Drs, they live 200 miaway and resist any contact.

    The HCMA helped save my life and I've tried to get them to at least look....don't know if they have...
    I do not give over to hate and anger as a general rule butI hate this disease/condition and I am really trying to figure who or what I am so pissed off at...probably at me for having this genetic legacy.

  • #2
    Re: HCM rears it's ugly head again- I think!

    Sorry your daughter is having this trouble -- and that everything is complicated by messy family history.

    But I don't think that being angry is a strange response -- it's a pretty normal one. I would say, though, that while I understand feeling angry at yourself, I really can't see that you did anything wrong. You didn't deliberately give your daughters heart trouble.

    I have no idea why your daughter's doc wants to see your ecg's, but of course the right thing to do is to see that they get the information they requested. Now that they know they have some heart issues, maybe they'll take HCM more seriously; you've done what you could.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Re: HCM rears it's ugly head again- I think!

      I'm really sorry you're having to live through this nightmare without any communication with your daughters. I assume she's getting an ICD implanted on Friday. I don't know what your EKG's could do to help either, but maybe this is a door opening so you can talk to them again. I'm sorry it has to be about such a difficult subject. Keep trying to get through to them. You never know when they'll decide to listen.
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

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      • #4
        Re: HCM rears it's ugly head again- I think!

        I understand some of your frustration. HCM is pretty common in my extended family, but they also, refuse to look. In my immediate family, my children are adopted, so the buck stops here. I have 3 sisters and 2 of them have HCM. Only one of them gets the care I think she needs. Recently, while at Cleveland Clinic, I was told that my genetic mutation is rare. When I think of the lost info that my large family could provide to research, I could scream. Provide the info that they need and keep telling yourself that you have done everything that you could. Some things are just out of our control.

        Anne

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        • #5
          Re: HCM rears it's ugly head again- I think!

          Kevin,
          I'm happy to hear that your daughter made it thru her "heart attack" and will be protected with an ICD. On the other hand, I understand your frustration. But perhaps this EKG thing will be a blessing in disguise. Perhaps your daughters EKG will look similar to yours and will lead to further studies and maybe an HCM diagnosis. I'm hoping that everything works out well.
          Linda
          Onward and Upward !

          Diagnosed 4/07 HCM with fixed & dynamic obstruction
          Myectomy with resected cordonae tendonae 4/08 CCF
          ICD 10/08

          Comment


          • #6
            Re: HCM rears it's ugly head again- I think!

            Kevin,

            I hope everything works out with your daughters... It is good that there is now some need for communication - maybe it can lead to something good.


            Please do not feel bad about having this disease/legacy.

            My mom felt very guilty about my brother having HCM, (he was in bad shape most of his life). And she felt really guilty when he passed away. It was not her fault -- and this is not your fault.
            We all have something in this life.
            To feel guilty or angry about your children having HCM from you is a wasted emotion.

            Best wishes.
            49 yrs. old
            Diagnosed at 31.
            Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
            First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
            Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
            Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
            My brother passed away suddenly at 34 yrs old from HCM.
            2 teenage children, ages 17 and 15.

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            • #7
              Re: HCM rears it's ugly head again- I think!

              Thanks guys, your understanding and support is what the HCMA is all about. Gordon your right of course but I still feel guilty some how, I know it's not deliberate but it's just how it is for me now. I'll work threw it all in time. The EKG thing is a mystery to me as well but then again I know more about chickens, cows and apple trees than cardiovascular electric circuits or why a one minute glimpse of mine has anything to do comparably with anyone else's.
              The family thing is just a complication, love my daughters, have no common ground with their mother. I have five sisters who have a total of twelve kids who have twenty plus of their own...and only one sister (no kids) who is even remotely concerned with HCM.

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              • #8
                Re: HCM rears it's ugly head again- I think!

                Kevin,

                Your daughter is in my prayers.

                Comment


                • #9
                  Re: HCM rears it's ugly head again- I think!

                  Kevin - I do hope the surgery is for an ICD, but your post didn't exactly say what was being done. Regardless, I wish her well. You may have your dr. talk to her dr. (mano e mano) about your HCM when he sends the reports. You never know, this might just be the starting point of a better relationship with her.
                  Marc
                  Diagnosed @ 48
                  Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                  Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                  AICD - Valentines Day '08, Spark Plug replaced 11/14
                  After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                  Quietly going insane . . .

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