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Myectomy Questions

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  • Myectomy Questions

    My name is Joyce and I am 45. I was diagnosed with HCM in June 2003. My 21 year old daughter was diagnosed with HCM at the same time. She received a pacemaker/defibrillator 3 weeks later. Dr Barry Maron is our cardiologist. Last week Dr. Maron said that he wants me to consider having a myectomy at Mayo. This is quite overwhelming for me and my family. I have read some of the entries in this forum. The information has been helpful. My questions are:

    What is important to know prior to the surgery?
    What things are important to do to prepare for the surgery?
    I have a low pain tolerance, what should I do post surgery?

    Thanks,
    Joyce

  • #2
    Hi Joyce. I can't answer your questions because I haven't been through this, but there are many here who have. I'm sure that they will post soon. I just wanted you to know that Dr Maron is one of the top in the field and I would have every confidence with his opinions. Best of luck and I hope to hear more from you soon.

    Reenie
    Reenie

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

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    • #3
      Hi Joyce

      I'm 47 and had a myectomy here in Virginia I guess I lucked out because I didn't go to one of the big centers, but i have seen Dr. Maron and his team and he is great and said the surgeon that did my surgery did a fantastic job on me and it was done Feb 23rd of 04 after you get through your first 3 days it is all up hill from there, you will learn that your pillow will become your best friend , but really it isn't as bad as i thought it would be, as far as the before during and after just do as your doctor says and you will do fine, when they tell you to start walking it will be slow at first but with every step it will get easier and easier, you will be going to a great center it is one of the best in the country, so try to relax like i said the first 3 days is the worse and then you will start feeling better and better and you can feel free to PM me if you would like, welcome to the board

      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

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      • #4
        Welcom Joyce,

        I had my Myectomy @ Mayo, July 2003 & I am very glad I did! Feel free to PM me/ask any questions you have on the Board-you have lots & lots of company here, with a group in the Myectomy Club!
        B4 Surgery: Eat well (healthy) & do all you can to have your MIND & BODY strong & healthy. I did a lot of research so I would know exactly what was going to be done. Explain as many details (as you & they are comfortable with) to your Family & close friends. You will need help at first, if possible, with household chores, showering, food etc.
        My deep Faith & Belief in G-d made it much easier.
        Right after surgery, you'll be in CCU, then moved in a day or 2 to the unit. The staff will take excellent care of you! When they say "get out of bed" - start walking.! The more you walk & blow into the tube (I don't remember what it's called, with the balls) the faster you will clear your lungs. Coughing is important (just painful)-laughing is recommended (but also painful)
        Everyone's stay is different & everyone heals at differing rates. I spent 10 days @ Mayo (some complications). I spent 3 days in CCU, when I went down to the unit, I sent my Husband home & he came back to get me, when I was released.
        The Food is TERRIBLE! They will bring you choc milk & shakes, if you ask & lots of canned fruit.
        By the time you go home you should be feeling pretty human & within 6 weeks, you begin to appreciate your good decision to do this.
        Good Luck-and remember, ask us anything!
        RONNIE

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