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Had my appointment with Dr. Maron

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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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  • Had my appointment with Dr. Maron

    I think I blew them away! Noreen the ARNP had come out first to call another patient in and saw me out of the corner of her eye.
    "Mary?!?!?"
    " Yeah, that's me"
    "Did you get a transplant and not tell us"
    "Uh, no but I feel pretty good"
    "Stand up" as I did she said
    " I can't believe this is you! You looked.. looked so sick the last time you were here"
    " Amazing what 2 years and 35lbs can do"
    "You look healthy. I want to talk to you in a few minutes" She came out a while later and asked my friends what they did to me. She hadn't met Mr. Pyne just my friend Erin. She asked him if he believed the change and he smiled and said should have been to her graduation! When I got back to the exam room she asked me how I had done it and I told her about the stopping soda. She asked about the low bp and how I was handling it. I told her about yohimbe and she was amazed that it brought my bp up to a respectable 107/70. When it was time for the exam she told me to hop up on the table and asked if she would be able to hear my heart with 5 shirts on. "What a wimp was the look I got. But, she said exclaimed you are thinner under there? she listened and said everything sounded fantastic. We started talking about the last time I was there and she said.
    "The last time you were here you looked half dead. I walked out of your room immediately and told Marty we have to admit this girl"
    "I see sick people every day but I don't normally admit them but I knew from the second I walked in to the room where you had to go"
    A little while Dr. Maron came in and he to was blown away he walked in and gave me a big bear hug and told me how happy he was to see me doing so well! He didn't want to change anything and my EF is back up to 50% and that my septum had gone down from 2.2 to 1.7. He told me about his trip to Universal and how amazed that I managed to work there for over three years! I told him some of the fun stories. I asked him to go over my research proposal and both he and Noreen were excited about it and he said he would him me any way he could. I asked about climbing Bunker Hill and not only okay but insisted that I had to do it!
    Only minor thing I had was the pain around the AICD and he set me up an appointment with EP to make sure we were all on the same page. As I was leaving my friend had called on the phone and was wanting us to pick up some alcohol pads the scheduler at the front desk grabbed a ziplock bag and filled it with alcohol pads!

    I have to admit just hearing those words from the guys who really count. Put me on cloud 9 and it rejuvenated me to keep pushing along.
    All in all I believe today was a very special day!

    Mary

    I absolutely love Tufts! While there may be a HCMA approved doc in Orlando now. i think I'm gonna stay where I am Noreen told me it would break Dr. Maron's heart if I didn't see him anymore.

  • #2
    Re: Had my appointment with Dr. Maron

    Wow Mary ! That's some fantastic news.Was it the weight loss that cause your septum to become smaller? I didn't know that was possible. We are going to see Dr. Maron on March 20th so he can do my sons yearly check and a screening for myself and my daughter. I am sooo nervous but I hope we get good news . I know how you feel about seeing another specialist...I live in Daytona and I see that there is one in Orlando but I really like Dr. Maron. Have you found a good cardiologist in the Orlando area for routine stuff ? The one I was seeing over here is not very well versed on HCM. I too can't believe that you are able to work at Universal especially in the summer time! I'm so happy for you that you had such a wonderful checkup. Take care.
    Lisa
    Mother to a 14 yr.old son diagnosed w/HOCM Nov.2010 COE Tufts Feb.2011 . Metoprolol 75mg

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    • #3
      Re: Had my appointment with Dr. Maron

      Mary, this is wonderful news. Keep up the good work
      Midge

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.

      Comment


      • #4
        Re: Had my appointment with Dr. Maron

        Mary, that's wonderful!
        Reenie

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

        Comment


        • #5
          Re: Had my appointment with Dr. Maron

          Mary, that's great to hear!
          Gordon
          Myectomy on Feb. 5, 2007.

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          • #6
            Re: Had my appointment with Dr. Maron

            You make me smile with such a darn good report! WAY TO GO !!
            Onward and Upward !

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

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            • #7
              Re: Had my appointment with Dr. Maron

              Fantastic report, Mary!! You have MUCH to be thrilled with, I'd say
              Amy
              Happy wife and mother of four
              Diagnosed wit HOCM in September 2005
              Myectomy at Mayo Clinic November 7, 2005
              Pacemaker August 24, 2011

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              • #8
                Re: Had my appointment with Dr. Maron

                Mary - So glad to hear that you are doing so well.
                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.

                Comment


                • #9
                  Re: Had my appointment with Dr. Maron

                  So awesome that you have found a fantastic medical team, soo very valuable. Also glad to hear everything looks so good!
                  Dx 1995 with non-obstructed HCM, verapamil 120mg
                  2004, ICD, battery recall and migration x2 (3 surgeries)
                  2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
                  Since 2008, Living without ICD.......
                  2011 First chest pains, frequent Began thinking about new ICD,,,,
                  10-2014 I'm ready!

                  Comment


                  • #10
                    Re: Had my appointment with Dr. Maron

                    Glad to hear the team was so excited with you! I share the same opinion of them as you do, they really make you feel more than just a passing patient,very endearing to them. Good luck with Dr Link on Mon.

                    John
                    had HCM since birth
                    'enlarged heart' identified in 96'
                    HOCM dx in 7/08
                    Myectomy 8/09
                    extended Myectomy 5/10
                    'End stage' HCM dx 8/10
                    CRT-D implanted 9/10
                    evaluated for Transplant 11/10
                    Listed for transplant 6/11

                    Comment


                    • #11
                      Re: Had my appointment with Dr. Maron

                      Mary - I always enjoy your success stories! Many more please!
                      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

                      Today's Birthdays

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