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Myectomy and defibrilator placement on 10/18/04 at NEMC

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  • Myectomy and defibrilator placement on 10/18/04 at NEMC

    Hi All,

    I am new to this site, and have already gained so much knowledge just reading and talking with Pam who gave me an indepth description of what to expect with my upcoming surgery.

    After having been misdiagnosed for many years, I was diagnosed with Obstructive HCM last year after my health insurance changed and I had to change physicians. I told the new PCP how poorly I felt and he listened. I was referred to a new cardiologist who examined me like I had never had an exam while a member of the HMO. He immediately referred me to a larger medical center. The cardiologist did a cardiac catherization, along with the usual cardic workup in August of 03 and put me on medical management with Atenolol 100 mg. Q AM, ASA 81mg. Q AM, and Verapamil 240mg. HS. I continued with my long standing symptoms of chronic cough, SOB, tachycardia, chest pain, peripheral neuropathy, irregular heart rate, insomnia and constant fatigue.

    When I visited the cardiologist this year in July after another ECHO, he told me that my obstuction was much worse and that I would need to see a "Super Specialist". I went home and researched on-line and found out about NEMCS"s Hypertrophic Cardiomyopathy Center. I requested a referral and was seen by Dr's Udelson and Maron within a week. Another ECHO with contrast medium was done. When I went back upstairs to get the results I was told that surgery was indicated. An appointment was made to see the cardiac surgeon in three weeks due to our schedule conflicts. While at the appointment, Dr. Maron gave me information about the HCMA.

    I printed every page of information provided by the HCMA and read them over and over. When the day came to visit Dr. Rastegar I already knew that I wanted to have the Myectomy, preferring the procedure that had a forty year sucess rate over the ablation with only about five years of statistics. I also was concerned about the scarring that would occur on the heart muscle.

    Dr Maron asked me to have an MRI of my heart at Beth Israel Hospital Which was quite an experience. It was very easy to see the thickness of the septum (!8mm), and the obstruction of the mitral valve.


    I would be happy to hear from anyone who wishes to share their experiences as this is all still new to me. Thank you.


    Marilyn
    Marilyn

  • #2
    Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

    It sounds like you're getting great care now. We're happy to have you with us. Thanks for sharing your story.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

      Marilyn,

      BRAVO on doing your homework and finding the BEST OPTION FOR YOU!!


      You are in great hands and have a great team working for and with you! My 1st ICD was implanted at NEMC - I did great and had a great post op team to care for me.

      Best wishes - you will be in my thoughts...I will be getting my new ICD on Tuesday the 19th here in NJ... so our devices will be the same age... Lets see whose battery lasts longer...ready set go!

      Live, Laugh and Love -
      Lx3
      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


      • #4
        Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

        Dear Marilyn,
        First I would like to welcome you to the site – and you are very welcome here. I’m sure a bunch of the folks who have had a myectomy and / or have been taken care of at NEMC will be responding and letting you know how lucky you are to be treated there.

        For HCM or HOCM (obstructed) there are three top locations you can go to for care and treatment. They are Mayo Clinic in Rochester Minn., Cleveland Clinic in Ohio, and the NEMC in Boston. People rate them as number one, depending on which one they went to for treatment. You are in the absolutely best of hands.

        I was also very impressed with the way you went about learning all you could about this disease. Effecting only one in five hundred, on average, it is an extremely small part of a cardiologist’s practice, and consequently most are not fully conversant with HCM. A person has to become their own advocate, and keep constantly informed of what their best care and options are.

        The very best of luck with your upcoming surgery – you couldn’t be in better hands. I also wish you an easy time of it and a speedy recovery. Please keep us informed of your progress as you get back to normal (that elusive state you have been missing for so long.)
        Burt

        Comment


        • #5
          Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

          Dear Burton,

          Thank you for your response and words of encouragement. I look foreward to sharing my experiences as I recover. Thank you again.

          Marilyn
          Marilyn

          Comment


          • #6
            Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

            good luck. hopefully you can update us soon.

            sandy

            Comment


            • #7
              Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

              Hi all,

              I spoke with Marilyn last night. She was of course feeling the pre surgery anticipation. We talked, shared and laughed for a bit. I assured her she will do fine.

              She has given me her daughters cell # and I will call Jessica later to see how Marilyn is doing .
              Marilyn has asked me to update you all on her progress. She is very happy to have googled this site just a short time ago . She appreciates all the support that you will all give to her and her family.

              We will all keep Marilyn in our positive thoughts .

              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


              • #8
                Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                Marilyn...

                I'm sorry i found your post a little late, but i'll be thinking about you today as you have your myectomy and ICD. You're in good hands there, and i know everything will go well for you.

                Pam: I think we would all appreciate hearing from you as soon as you get any word on how Marilyn is doing. Thanks in advance for keeping us posted.

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

                Comment


                • #9
                  Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                  Will do Jim.
                  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


                  • #10
                    Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                    Marilyn

                    Good Luck and know you are in good hands with these guys they will fix you right up keep a positive attitude and you will do fine

                    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


                    • #11
                      Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                      Hey everyone.

                      I just spoke with Jessica; Marilyn's daughter. She told me that Marilyn did great. She is now in the Cardiac Thoracic Intensive Care Unit.

                      Dr. Rastigar told Jessica the surgery went very well and he is pleased with the results. She will go in and see her mom later this evening . I will speak to her again tomorrow after she gets out of school she will have a phone # for me to speak to Marilyn in the step down unit.
                      When Marilyn and I talked she asked me to call her and check in with with her. I will do this when she is up to it.

                      As requested I will let you know how she progresses. She is looking forward to a hug from Dr. Maron.

                      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


                      • #12
                        Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                        Thanks for the update, hoping for continued good reports as her recovery progresses, Linda

                        Comment


                        • #13
                          Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                          Thanks for the update Pam!

                          Marilyn, so glad to hear everything went so well for you... you're well on your way to feeling better than you have in a great while! We'll be thinking about you as you recover.

                          Take care,

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

                          Comment


                          • #14
                            Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                            Marilyn,

                            So glad to hear all went well today.
                            I was unable to post for the last few days, but my thoughts were with you.

                            Wishing you a easy and fast recovery.

                            Stuart
                            Cleveland Myectomy Club
                            August 31, 2004

                            Comment


                            • #15
                              Re: Myectomy and defibrilator placement on 10/18/04 at NEMC

                              Glad to hear all is well!



                              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

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