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Interesting hospital admit.


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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • Interesting hospital admit.


    I unfortunately found myself in the hospital once again. Which I'm not horribly bummed out about because I've gone from what seemed like every other week to about every other month and sometimes longer. I know I've been pushing myself pretty hard with school, work, and church life. But, the past few weeks my fatigue has been pretty bad. We checked my B12 and it was low borderline normal so we did the b12 injections but I really didn't see a vast improvement of my energy. Friday I had to walk around the main campus at UCF ( to pick up my dean's list certificate!) and found myself with shaking chills and drenched in sweat. By the time I drove to my work my chest was also hurting and I drove for about 20 minutes without the AC on (remember I life in Fl). The receptionist noticed immediately that I was very pale and asked if I was ok I told her I wasn't feeling well. I didn't necessarily want to go to the ER but couldn't get a ride to my doctor's office (about an hour away) so we had to do the ambulance bit (which in hindsight I'm glad I did).

    For the past week I was complaining of severe fatigue and had done blood tests the day before. My local cardio thought I was fighting a virus of some kind. When they got the blood tests back on Friday night it appears that my thyroid finally pooped out. In 2009 I had the partial thyroidectomy and I guess it had over worked itself. I guess that is the good news that we can get it under control. Bad news because of my HCM it's going to take 6-8 weeks because we've got to go up slowly due to my history of V-tach.

    Now to my "interesting" a cardiologist that had never treated me before was on that day. He seemed really up on HCM and said he was looking over my CT from April and was surprised no one had mentioned this ever. He said that I had non-compaction cardiomyopathy. He also stated that it was very rare and that he has never seen anyone with HCM and non-compaction.

    So, my question anyone ever heard of non-compaction cardiomyopathy? I'm going to write Dr. M. Maron an e-mail tonight asking his advice and try to get a copy of the CT scan. I'm also going to visit my local guy and get his take on things.

    A very interesting admit indeed! anyone know a way I can boost my energy while trying to get my thyroid levels up?


  • #2
    Re: Interesting hospital admit.

    Glad you listen to yourself (we all must do this better!) and sought help.
    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 . . .


    • #3
      Re: Interesting hospital admit.

      Yes, I have heard of non-compaction cardiomyopathy, though I would be very surprised to find out that you had it and Dr. Maron had never noticed it.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.


      • #4
        Re: Interesting hospital admit.


        Glad you are ok! Sounds like you need to take it down a few notches for a while.

        Toodle pip... Moosedreams
        Diagnosed HCM Nov 2009
        100 mg Atenolol; Baby asprin
        First Trip to CCF June 2010
        HCM Specialist at CCF... Dr. Harry Lever
        Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
        AICD w/pacer at CCF... December 20th 2010

        Once you choose hope, anything's possible. ~ Christopher Reeve

        Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125



        • #5
          Re: Interesting hospital admit.

          I don't think that is possible yet! Starting June 23rd I've got another class starting up 4 days a week on the main campus (35 miles one way). Hopefully tomorrow I'll have time to grab the CT CD.



          • #6
            Hi Mary,
            I realize that this post is from 2012 but ...i was curious about the non compaction cardiomyopathy being that my 10 yr old daughter was recently diagnosed with it and my husband has hocm. Did you have exercise limitations throughout your childhood? If you don't mind me asking, what did your clinic of excellence say about the ncc findings in the er?

            Kind regards,
            husband hocm;


            • #7
              Sorry, I've not been on here in forever! Actually, nothing ever came of that. As a couple of years ago I got a new local cardiologist that actually knows and trained with Dr. M. Maron. He has gotten my hospital admits down to every few months vs the seemingly weekly point I was at.