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Visit to Cleveland with Lever Yesterday

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Rainey I am happily married to a wonderful husband and have three beautiful children (18, 12 and 10). All my kids are involved in sports. My oldest plays Division II College lacrosse and soccer. All of my kids are screened yearly. I am still scared every day they play knowing how many young athletes die. I try to get the word out about knowing family history. Find out more about Rainey
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  • #1

    Visit to Cleveland with Lever Yesterday

    Well, the EKG, history, x-ray and first meeting with Dr. Lever went well. However, things quickly went downhill fast. During the MRI I had an adverse reaction to the contrast so they had to stop the test. I had extreme stomach pains and nausea. I must say though, those people up there are ready for anything! I got out of that tube and was surrounded by 10-15 people all doing ... something within about 10 seconds. I heard someone call for a crash cart because I was a "cardiac patient" all the while being told that I was fine - it was just a precaution and that all my vitals were fine. So, that test wasn't completed. Then came the echo with amyl. I had amyl during my TEE but never while awake. Well, let me tell you - NEVER again will I do that while awake. I had a horrible reaction to it as well. Several cardiologists converged on the room and without knowing my history looked at what was going on and I heard one of them ask if "she had a history of HOCM." Wow, we must have little signs on our hearts! Anyway, it felt like my heart was going to explode in my chest and it took several minutes to get me stabilized and get all of the intense shaking to stop. They're welcome to do that again during sedation but never again while I'm awake. Ugh. The metabolic stress echo went well and I passed with flying colors. Results were that he decided to triple my meds to 75 mg. per day of Atenolol. Of course my first question was, "Great, does that mean that I'll gain TRIPLE the weight??" He wasn't amused and said that we'll have to see. Okay then. Other than that, he just confirmed everything that I already knew and said that right now, there is no medical intervention necessary and will decide on a defibrillator when he gets the results of my 48-hour holter monitor next week. I will go to see him in a year for a follow-up assuming that I won't need him sooner. I'm VERY glad to be home. Oh, and I wasn't impressed with the Cleveland Clinic Guesthouse. I thought that the room was marginal (first room we had to switch out of because it wreaked of cigarette smoke) and the staff were actually fairly rude. Location was excellent but I think that we'll stay at the Intercontinental and it WON'T be on my birthday like we did it this year. Not a great day but at least I didn't find out that anything ELSE is wrong with me!!!
    ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
    *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
    *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
    *Gradient 100-185 when provoked.
    *Currently being treated with Atenolol, 50 mg. per day.
    *Three kids: 19, 13 and 11, all presently clear of HCM.
    *Patient of Dr. Sharlene Day, U of M.
    *ICD - August, 2010
    Tags: None
  • #2
    Re: Visit to Cleveland with Lever Yesterday

    Rainey - glad you made it through the day! Gotta love that "Amyl Buzz," huh?! At least you can say that you were seen by the best and have a good baseline going forward.

    Best wishes going forward.

    Andy P

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    • #3
      Re: Visit to Cleveland with Lever Yesterday

      Glad you survived it all, Rainey.

      I have to say that I thought amyl nitrate was one of the more unpleasant experiences of my own testing -- and I'm completely baffled by the fact that some people use it recreationally, to heighten sexual sensation. That was about the last thought on my mind! To each their own, I guess.

      Gordon
      Myectomy on Feb. 5, 2007.

      Comment

      • #4
        Re: Visit to Cleveland with Lever Yesterday

        Not the best way to spend your natal day!
        Hopefully further tests will go smoother!
        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 . . .

        Comment

        • #5
          Re: Visit to Cleveland with Lever Yesterday

          Gordon, yeah, heighten sexual pleasure? I read that, too. Yeah, right. I seriously can't imagine. Unless all the panting, attempts to climb the wall and extreme twitching would turn my husband on ..... Ugh. WHATEVER! Yeah, never again. I must put my foot down there!
          ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
          *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
          *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
          *Gradient 100-185 when provoked.
          *Currently being treated with Atenolol, 50 mg. per day.
          *Three kids: 19, 13 and 11, all presently clear of HCM.
          *Patient of Dr. Sharlene Day, U of M.
          *ICD - August, 2010

          Comment

          • #6
            Re: Visit to Cleveland with Lever Yesterday

            Rainey, I'm glad you got some good information even though some of it was a little painful to obtain. I hope your holter is clear and you can hold off on the ICD.
            Reenie

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

            Comment

            • #7
              Re: Visit to Cleveland with Lever Yesterday

              I had to sound in on amyl nitrate too.

              OMG, horrible stuff. I was actually telling my doctor about it and how much I hated it, and he said, "Wow, that bad huh? Did you know it's a drug of abuse?" It took me a minute to process what he meant. I was thinking torture, you know, like to torture spies or something. I was thinking, well, that's not so surprising.

              No, I can't imagine wanting to inflict that on yourself!

              Debbie

              Comment

              • #8
                Re: Visit to Cleveland with Lever Yesterday

                Rainey ,

                Glad to hear the worst part of it is behind you...hoping all remaining results pending are not too much to worry about and you get positive news.

                Pam
                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

                Comment

                • #9
                  Re: Visit to Cleveland with Lever Yesterday

                  Originally posted by gfox42 View Post
                  I have to say that I thought amyl nitrate was one of the more unpleasant experiences of my own testing -- and I'm completely baffled by the fact that some people use it recreationally...
                  This is a big mystery to me as well. 'Poppers' are a huge deal in the clubs and have been for decades. I remember in my teen years seeing people sniffing this stuff on the dance floor and wondering what the heck it was. My first personal experience with it though was several years ago during my HCM testing. I just don't get it. If climbing the walls and having your heart race like it's going to explode at any second is a turn-on... well I'd rather be turned-off then.
                  "Some days you're the dog... some days you're the hydrant."

                  Comment

                  • #10
                    Re: Visit to Cleveland with Lever Yesterday

                    Exactly. I just don't get it!
                    ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
                    *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
                    *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
                    *Gradient 100-185 when provoked.
                    *Currently being treated with Atenolol, 50 mg. per day.
                    *Three kids: 19, 13 and 11, all presently clear of HCM.
                    *Patient of Dr. Sharlene Day, U of M.
                    *ICD - August, 2010

                    Comment

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