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mongo_jones Find out more about mongo_jones
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  • re-connecting

    hi all,

    i haven't posted here in a while--actually i've been having trouble accessing the site (has anybody else?).

    for those who remember me (and those who don't): i was diagnosed with hcm (no obstruction) last october at the age of 32.5 and was implanted with an icd in very short order due to a maximal septal measurement >30 mm. i'm approaching my first anniversary of (shock-free) implantation. when i was diagnosed last year i spent some weeks in shock expecting to die at any moment or to go into rapid physical decline. a year later here i am, feeling as healthy as i was before diagnosis (except for the lump on my chest where the icd is) and not expecting to go anywhere anytime soon (i don't like to say this too much since it feels like tempting fate).

    i usually describe myself as asymptomatic but i do get short of breath very quickly when i run etc. (though this is probably not unrelated to my supreme lack of conditioning)--the only medication i'm on is 50 mg of toprol--i do feel a little less mentally quick than before but i haven't had the list of bad-side effects that other people seem to have had with toprol. i'm re-listing all this information because we seem to have some new people here and i know from my time after initial diagnosis last year that every story, every piece of detail helps. if anyone has been recently diagnosed and has been having trouble dealing with it please feel free to send me a private message--i'll be glad to share what little insight i've developed on living with the condition and adapting mentally to it.

    as for my lack of activity here, part of it is because i moved this summer. as some of you know i went from los angeles to boulder (i'm glad to report that so far the rise in sea-level has had no adverse effect). the other part of it is that i tend to mentally be at much more peace with my condition when i'm not thinking too much about it, and given my obsessive personality it takes me a long time to shake some of the sadder stories i occasionally read here (even though at some level i know that each of our conditions is specific and things that happen to other people are rarely generalizable). and so, i sometimes go a long time between visits and then don't always post because posting leads to follow-ups and more visits which is not to say i don't appreciate this community--i do; it is a great resource both for information and strength, not to mention for lisa.

    anyway--this has been a long post, and the last time i tried to make a long post with updates the site broke on me so i won't risk wasting any more time and effort.

    hope everyone is feeling as well as they possibly can!



  • #2
    Re: re-connecting

    Hi there! I'm glad to see you're still doing all right. I've wondered about you. Glad to hear that the high altitude isn't a problem for you. Yeah, we've had some board trouble recently, but I think it's fixed now. I hope that you love Boulder. I've heard it's a great place.


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


    • #3
      Re: re-connecting

      Hi, glad to see you back and doing well. I thought I was the only one having problmes with getting to the site. I am glad that it is fixed. It would not take my log in for a long time today, then would not list the unseen letters. I am trying for remember when I last visited so I can look up what I missed.

      Keep in tough and have a great life.
      Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.


      • #4
        Re: re-connecting

        It is my understanding that the HCM moved web hosts and there must have been a little gap b/c the site was just not available for a few days.

        If you log in, there is a link on the right, just above the messages that will automatically pull up only the last posts since the last time you logged in.

        Chuck--Is this where we get to say "We told you so?"


        • #5
          Re: re-connecting

          Hey Mongo... I missed seeing your name on the board... You know I love it!

          Glad all is going well! Give me a call when you have a chance I have somethings I would like to talk about (re your profession!)

          Be well,
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)