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advice please


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musicmaniac! I am 11 years old, I have brown hair, brown eyes, glasses. Find out more about musicmaniac!
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  • advice please

    Hi I'm music maniac. I'm 11 years old. We saw the Dr. yesterday and he's sending my family to Cleveland, Ohio to talk to a surgeon. I'm scared and do not want to have a myectomy! is there anyone out there who's had it and knows what it's like?


  • #2
    Re: advice please

    Dear Katelyn,

    The Cleveland Clinic is the #1 heart center in the US, so you are in good hands. Everyone gets scared at the idea of surgery, so you are not alone.

    Lots of people here have had myectomies. You can click on the Search link (in between New Posts and Quick Links in the red link toolbar above) and do a keyword search for myectomy to find a ton of threads about them and the questions people have asked. And i'm sure people will post here, too, but there is a lot already here that you may find helpful.

    I have recently been seeing surgeons to to find out if i should have open heart surgery, too, but they think I'm too far gone for surgery to help me. If a myectomy would make your heart work better, then it will improve your quality of life and probably the length of your life as well. So as scary as it sounds, it could be a really important thing to do.

    From what people have said here, you would be recovering from the surgery for a few weeks and then you would feel great, better than ever. so a short time of yuckiness for a long time of way better.

    Just remember you are going to see doctors who really care and are committed to giving you the best treatment.

    Good luck,



    • #3
      Re: advice please

      Hello Katelyn,

      I completely concur with what Sarah wrote. The scariest thing about myectomy is the thinking about it before hand. I had one in March (7 March, to be exact), and I'm now feeling a great deal better.

      You will find that just about anyone who has had it, will tell you that they feel a lot better for the surgery, once the immediate task of recovering from the surgery itself is done (and even during the recovery period I was beginning to feel the benefits).

      Typically, myectomy patients are in hospital for about 5 days, then spend some time at home. Within just a few weeks you will be back to normal as far as the recovery from the actual surgery is concerned, and will be feeling a lot better than before where your heart is concerned.

      The one permanent reminder you will have is a scar on your chest, where the surgery was performed. I haven't had the chance to display mine in public, yet, but when I do, if anyone comments, then I will proudly explain that it's my "lifeline".

      I would add one suggestion to what Sarah wrote. Call the HCMA office (during the week) and talk to Lisa. You will get lot's of good information. (Or your parents could call - or why not both you and your parents calling).

      Best wishes to you and your parents (who may have a harder time of this than you do - believe it or not).




      • #4
        Re: advice please

        Hey Katelyn. It's natural to be scared about surgery. I had surgery when I was a year younger then you (I'm 14 now). I was scared, but I had one of the best surgeons out there. That made me feel safe. You're going to a good place for yours, so don't worry about it.
        Diagnosed - April 1992 (age: 2 months old)
        Myectomy - June 2002 (age: 10)
        Propanolol: 120mg (morning & afternoon), 90mg (evening)
        “The person worth listening to is often the quietest person.” — Japanese proverb
        “When you paint a dragon, you paint his scales, not his bones; when you see a man, you see his face, not his heart.” — Chinese proverb


        • #5
          Re: advice please

          Hi Katelyn. You've already gotten good advice. We have several kids here who have had surgery. I hope their parents will tell you what it's like. I see Jamie (CardioClay) already told you her experience. You'll be in good hands in Cleveland. Do have your parents call 973-983-7429 and talk to someone in the HCMA office if they haven't already.


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


          • #6
            Re: advice please

            Hey Katelyn: First off I am so sorry that you are having to even consider surgery. It is pretty overwhelming. My son had a myectomy done on January 25 of this year and he is doing absolutely amazing. He had gotten to where he could not do much before surgery. He would give out walking from one room to another. Now he is riding bikes all over and is very active. He was 12 when he had the surgery in January. He turned 13 on March 16. We went to Boston to have his surgery. My exhusband went to Cleveland and had surgery there in April. He is doing really good as well. James actually said it was not as bad as he thought it was going to be. I will get him to send you a message as well.

            Just know that you have a huge support group here ready to help you anyway we can. Look forward to hearing from you! Janet
            My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.


            • #7
              Re: advice please


              sorry im not realy 2 good on the advice thing but hope everthink goes well 4 u and dont worry its alright 2 be scared ,things will just fall in 2 place
              good luck
              Forever Young

              I was diagnosedwith HCM at 6.
              Went into Atrial fibrillation so had a ICD put in at 16
              Went into Heart failure at 17
              Got a heart transplant at 21(2009)


              • #8
                Re: advice please


                I had the same operation done when I was 17. I know it can be scary, but nothing is for certain. When I was 14, a doctor wanted to do the operation, but I didn't actually have it done until I was 17. It is amazing what meds can do. Hang in there.