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Home from CCF


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Ronnie Find out more about Ronnie
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  • Home from CCF

    Hy Guy!

    I returned from CCf, Saturday (the day I planed to leave). Well, I guess I have to join all of you who say"how much you learned" I didn't think there was any new info, regarding my condition. Wrong Again!
    At my meeting w/Dr Whitlow (who did my Angio) He said, from the pictures he received, it was "unclear" exactly the extent of the blockage. What he was concerned about was the fact I've had a Myectomy & the pressures in my Lungs are again elevating past 60! He said we will deal with 1 problem at a time & the blocked artery comes 1st, but we need to consider Septal Ablation at some point! I could not believe it! I thought my Myectomy only a little over a year ago, addressed that problem.
    At any rate, in the course of the Angio, they discovered an addittion blocked artery (80%), so that was a lucky break for me! I now have 2 new Stents. Later that evening, when Dr Whitlow's D Fellow, who assisted rounded in to see me. He said "You anatomy, is different from everyone elses! Some parts are upside down & some are in different places!"
    I'm pretty sure, I'm from this planet, born of humans from this planet, so who else has this problem&knows someone with this unusual anatomy? I hope they allow me to stay on Earth-I've grown fond of my surroundings! Seriously tho, I', looking forward to input.
    So, by all standards, the proceedure was a success, CCF is FABULOUS, I had a Private Room (requested). But truthfully, I don't feel any better than the day I got there!
    Talk about genes in disarray!
    What do I do now?

  • #2
    Re: Home from CCF

    Actually, I am one of the weird ones too. Dr. Maron even said that. Although my stuff isn't flipped around it is very very small. So tack the hypertrophy to the already taxed arteries and veins and I get what they call "heart spasms". It feels much like a heart attack and my troponin levels go up. The average person's troponin levels are about 0.1 mine are about 1.6 so my heart always seems to be in some kind of distress. The good part is they say there is no permanent damage it can repair the small stuff so I guess I'm fortunate there. But, I do not respond to traditional heart meds because I am hypotensive. 5mg of atenolol put me in the hospital. I also respond best to the meds that are contraindicated for HCM. ACE inhibitors did wonders for awhile but my bp again plummeted so we just do pain management now. Maybe a new drug will come up and I'm sure I'll be one of the first to try it out.

    So a little help from another weird HCMer!

    Mary S.


    • #3
      Re: Home from CCF

      Hey Ronnie,
      Great news. OK, they are tackling one problem at a time – but by golly, they are getting things done for you. Lovely.

      Can’t wait for your next visit to town. Do you think your husband will be able to teach the fish how to make phone calls? Of course he would have to give them the phone back.

      Please keep in touch, as I think we are all interested in how well you get along.

      Regards from both Shirley and me, (She refers to you as that nice girl we met.)


      • #4
        Re: Home from CCF


        Glad to hear you are through the biggie parts of this ordeal.

        You made me laugh cause I have always told people that I was dropped here from another planet by mistake and that my heart is probably perfectly normal on my planet. Sounds like a good theory right?

        Rest well.

        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


        • #5
          Re: Home from CCF

          Pam and Ronnie,
          I’m sorry, but I don’t agree. We’re not from another planet. We were invented by doctors who wanted a good income for life.

          I went to the doctor the other day and the first thing he did after smiling at me was to grab the phone, call his wife, and tell her that she could have the new BMW after all - - - and I’m reduced to a scooter. Cheez!


          • #6
            Re: Home from CCF

            What arelief to learn I'm an "Earthling" & just here for the entertainment of the Medical Profession! In reading your post I thought you "broke the code" Dan dropped his phone into the Lake purposefully-that's how he communicates with our "home Planet". So the next time someone says to you"don't just sit there like a Lox" I can reply "what do you think I am?".
            Promise me, if they send me to a zoo, you'll help break me out!


            • #7
              Re: Home from CCF

              Ronnie –

              Any time - - - any zoo - - - you or Dan.

              Funny thing, when the kids were small we took them to the zoo often, - but they kept making us take them back.



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