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I'm Getting the Myectomy in Boston

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dughr Find out more about dughr
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  • I'm Getting the Myectomy in Boston

    Hi everyone,

    After a long arduous journey through the literature, Myectomy Vs. Ablation, through talking and writing to people here and anywhere I could find them, my decision has been made. I have been under the expert care of the docs at New England Medical Center (NEMC) and Tufts, and spent the last number of months enduring a vigorous campaign of medications in all levels and combinations. Meds did nothing but make me feel worse. So as of this morning, after spending another long bit of time with Dr. Maron and Dr. Udelson, and a wonderful conversation with Lisa, I am scheduled for my surgery in mid June. I also have the rare good fortune to have one of the most emminate myectomy surgeons, who retired in January, but has dedicated his retirement years to further educating the current surgeons, to be standing in on my surgery as teacher and coach, by the name of Dr. Gordon Dannielson. I feel very fortunate to have him a part of this. I take comfort in knowing that Dr. Dannielson would not be working with him (my surgeon) if he were not very gifted in his craft to begin with.

    Thank you to everyone who took the time to tell me your experiences in detail. Your time and caring has made a difference and helped me make the biggest decision of my life. Thank you also Lisa for all you do. If not for this site, I would not know where to start. I have been able to make a well informed decision which I go into knowing I am doing the best thing for me. Thanks also for the conversation this morning. No doubt that was the final piece of information I needed to make the call this morning to schedule it. I really look forward to being able meet you when you are here. Most of all, I look forward to walking up a flight of stairs, riding my bike again or picking up my bagpipes and getting back to living. I know everyone around me is anxious and happy this day is finally here. What a relief...what an incredible relief to finally get to this day.

    Best wishes to everyone.

    Doug
    NEMC's (Boston) First Myectomy 7-22-2003

  • #2
    Re: I'm Getting the Myectomy in Boston

    Hi Doug ,I'm so glad to hear that your visit to Boston went well . I have actually been anxious to hear about all the details . It must be a relief at least to know you have made an informed decision and can be confident in that . Also, knowing you will be in excellent care of those masters in Boston helps a lot huh? I know it can be scary stuff but remember what Lisa says ," Knowledge is power." Good job! I too am leaning towards the myectomy, 99%. You are going to have to be a "mentor direct " to me , if you will. Dr. Maron increased my atenolol to 200mgs. q.am. And 150mgs. q.pm. Said I can increase to 200mgs.bid in 7 days and call him in 10 days. So I am behind in the decision making or planning the intervention. That's ok for me because my oldest daughter will get married Oct. 10, 03 and I will want to delay untill after that, you know just in case???? Well now is the time you can fully prepare yourself mentally and emotionally for the next leg of your journey,( can you tell I was a psychiatric nurse?) I trully believe this statement and a wonderfull doctor ,Indian man , told me once, before I had surgery, "you must prepare your mind for this procedure so that your body and spirit can ease through it ." I have never forgotten his words nor the wisdom of his advise . Our minds are our foundation to strength ,determination and success. I know that you will succeed and I wish you all the best and strength as you prepare . Keep us all posted.... details ,details ,please . You can send a private message if you prefer. Take care ,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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    • #3
      Re: I'm Getting the Myectomy in Boston

      Dr. Dainelson is one of the most skilled, caring and over all wonderful people I have had the honor to know. YOu are truely in good hands tih him. Many other members have been in his care and have done very well.
      I am thrilled he will be in Boston helping them to establish themselves as a top quality center for myectomies...we need more of them!

      This is really good news and I am very happy for you!
      Be well...I hope to see you soon!
      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)

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      • #4
        Re: I'm Getting the Myectomy in Boston

        This is wonderful news! Dr. Danielson is one of a kind. I wasn't sure what he would do in his retirement, but I knew, one way or another, he would continue to share his special, God-given talents with the world. You have the BEST! Keep us posted with progress reports, we'll be anxious to hear. Linda

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        • #5
          Re: I'm Getting the Myectomy in Boston

          Doug,

          I'm thrilled for you that you've made your decision! It's time to feel better and get your life back again (and play those bagpipes! )

          It sounds like you are in wonderful hands though i'm not familiar w/Dr. Danielson. What hospital was he affiliated with?


          Take care Doug - rest up!

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          • #6
            Re: I'm Getting the Myectomy in Boston

            Dear Doug,

            I'm sure you must be feeling a lot of relief in having your decision made. I hope all goes smoothly for you and that you enjoy all the new experiences you'll have in the next month or so. (I often remind myself, "Okay, this is just another learning experience!")

            And, Doug, I want you to know you're helping me with my own decision about myectomy with your sharing. Thank you!

            Keep us posted throughout your surgery & recovery, please,

            Pat

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