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On my way to Boston

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05
Toogoofy317
Toogoofy317
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  • #1

    On my way to Boston

    I'm finally on my way to Boston! I still feel pretty cruddy they let me out on the pretense that I was going to Boston. I feel real weak and will post soon.

    Sorry to keep everyone wondering. I've just been too sick. As far as Burt leaving the forum. Don't make me come over there and give you a spanking you bad boy!

    Mary S.
    Tags: None
  • #2
    Re: On my way to Boston

    Mary, so glad to see you post - I was wondering. Hope Boston gets things in order for you real soon. Linda

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    • #3
      Re: On my way to Boston

      Mary

      I hope you get fixed this time.....keeping my fingers crossed for you


      Have fun with your friends also

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment

      • #4
        Re: On my way to Boston

        Good for you Mary! Here are prayers that great things will be accomplished on this trip! Keep us posted.
        Peace,

        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

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        • #5
          Re: On my way to Boston

          Oh Mary,
          I tried calling you a few times but couldn’t get through. (I wonder if your recent bouts of weather have damaged the inter-cell connections.) And not seeing you posting really had me concerned.

          Have a safe and comfortable trip up to Boston, take it nice and easy, and while you’re up there, why not look into staying? We’ve talked about this before, so I won’t go into it here, but you know how I feel. (I wonder how you would look with the sunglasses off and snowflakes in your hair? Hmmm.)

          I’ll make a deal with you. I’ll hang around and you keep us posted. How’s that?
          Feel better - Grandpa

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          • #6
            Re: On my way to Boston

            Mary,

            Glad this date has finally come for you and now hopefully you will get some good answers and better direction.
            Enjoy the fall weather and feel better soon.

            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

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            • #7
              Re: On my way to Boston

              Good to hear from you - have a safe trip to Boston!
              TAKE CARE!
              Lisa
              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)

              Comment

              • #8
                Re: On my way to Boston

                Good Luck in Boston Mary.
                Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
                So if you are capable of thought then you are capable of great things
                Good luck and stay well.
                Glen

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                • #9
                  Re: On my way to Boston

                  Good luck in Boston, Mary!

                  "Some days you're the dog... some days you're the hydrant."

                  Comment

                  • #10
                    Re: On my way to Boston

                    Be safe and have a great trip.

                    Reenie
                    Reenie

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

                    Comment

                    • #11
                      Re: On my way to Boston

                      Best of luck in Boston.
                      We are all in your corner

                      Stuart
                      Cleveland Myectomy Club
                      August 31, 2004

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                      • #12
                        Re: On my way to Boston

                        Mary,

                        Have a safe trip and hopefully you'll find the answers that you so desperately need!

                        Rene'

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                        • #13
                          Re: On my way to Boston

                          Mary, take care and I hope they find out the best way to help you. keep us informed and try to smile.
                          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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                          • #14
                            Re: On my way to Boston

                            Well,

                            I survived the first part of the trip the wedding. It was beautiful! It was the best time I have had in a long time. It sure is good to be here. Finally, I can stop worrying for a little while at least.

                            As far as Friday goes I'm not sure I'm looking forward to it. I guess I'm scared I might hear things I don't want to hear. But whatever happens I'm sure it will be for my best intrest.

                            I apologize for not keeping everyone updated. The past few weeks have just been trecherous(sp?). Not only was the ticker acting up but I was diagnosed with a new ailment. It is called gastroperesis. In other words my stomach does not like to work it takes 60 times the normal amount to digest my food. So it was what was causing all of the stomach pain and other problems. It is much like HCM no cure! Great another one. Another ironic thing is that other than medicine the next step would be a gastric pacemaker. How funny would that be! I think I'd be the only person in the world with two pacing devices. I wonder if they would interfere with the other. Oh well, thats down the line.

                            Thanks to everyone for their kind thought. I will keep you all posted! Oh yeah if anyone is going to be at the HCM clinic on Friday I'd love to meet up with you! PM and we can arrange something.

                            Mary S.

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                            • #15
                              Re: On my way to Boston

                              Mary,

                              I think you need a new body!

                              We are all here cheering you on to getting help!

                              Rhoda

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