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Myectomy: What's in store?

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  • Myectomy: What's in store?

    [Myectomy: What's in store?]

    Author: Andre Theriault (---.nb.vibe.net)

    Date: 04-08-02 21:16

    Hey all,

    I'm new to this site and board, but I'd appreciate some input. I was first diagnosed when I was twelve; I'm 28 now. I've been on every med from Inderal to Verapamil, and I'm now on norpace and metoprolol. I've suffered from shortness of breath, chest pain, lightheadedness, and an overprotective mother. I'm about to undergo a myectomy for my hypertrophic cardiomyopathy and I'm not sure what to expect. I know it relieves symptoms and all that; what I'm more concerned with are the little things, like what to expect in the hospital and shortly after. How sore will I be? How long will it take me to be up and around? How big of a scar does it leave? These sound like stupid little questions, and I'm embarassed to even bring them up, but I'm getting a little anxious and could use some help. Any info you could provide would be appreciated.

    Andre Theriault

    Fredericton, New Brunswick, Canada

    [email protected]

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy: What's in store?]

    Author: Sarah Beckley (---.dsl.mindspring.com)

    Date: 04-09-02 00:47

    Dear Andre,

    Welcome. I was on Norpace and Toprol for ten years! And tried verapamil et al. I know how you feel. I haven't had a myectomy, however, but I'm sure some of our posters will chime in with their experiences.

    When is it scheduled for? Who is doing it? Have you been fully briefed on the procedure? You can call the HCMA office at 973-983-7429, too, as they are extremely helpful.

    Sarah

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    [Re: Myectomy: What's in store?]

    Author: Pat-Sub (---.intrepid.net)

    Date: 04-09-02 22:10

    Hi Andre,

    Just wanted to share with you that I had a myectomy Feb. 2001 at age 61.

    I had surgery on the 13th and the morning of the 15th I was up bathing myself and walking about. On the 16th, I had an ICD implanted and came home on the 19th.

    The pain is not that bad and they keep you comfortable with meds. The scar fades with time and can be conceled. The best part is it does relieve symptoms and prevent CHF. You have youth on your side to help. Make sure the Dr. or hospital explain completely their process before and after surgery. It helps to know what to expect, thus eliminating that fear of the unknown.

    I wish you well. Let us know how it goes. Let me know if I can answer any other questions.

    Pat

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    [Re: Myectomy: What's in store?]

    Author: lisa (208.47.172.---)

    Date: 04-10-02 14:45

    Andre,

    I can tell you we have many members of the HCMA who are more then happy to share their experiences with you. If you call the office I can help set you up with those who can give you 1st hand information!

    973-983-7429

    Best wishes,

    Lisa Salberg

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy: What's in store?]

    Author: Nancy (---.tnt1.flat-rock.mi.da.uu.net)

    Date: 04-15-02 19:45

    Dear Andre,

    I just had a myectomy March 21,2002. I didn't know what to expect. Mine came on suddenly. We found out that I had IHSS March 1, 2002 and I had the surgery three weeks later at the University of Alalbama in Birmingham. I had spent 19 days in 3 different hositals. Of course, they open your breast bone and ribs. What I did not know is that there is a drainage tube in your navel, pacing wires hooked up to your heart exiting just above your navel, and a heart pump in your groin. The day of the surgery you shave yourself from neck to ankles. The nurse comes in and gives you an ATAVAN by mouth and a shot of morphine. They scrub your whole body with iodine soap, tubes down your nose and your throat. You are on a heart\lung machine until you can breathe on your own, a catheter and you are in intensive care unit for at least 24 hours. You are so weak that the nurses literally bathe you and brush your teeth, it feels really good though. They take numerous x-rays which are really painful. The nurses were all very kind and understanding, you can have all the morphine you want. When I was transferred from ICU to my hosital room it was very painful to be moved from bed to bed. The next morning(4AM) I was up out of bed being weighed. They told me if I walked the pain wouldn't be as great. I was really fortunate to have a supportive husband to help me walk. I had surgery Thursday morning and was released Sunday morning. Then we drove home to Michigan over the next three days. I am still very sore and I still have chest pains but, the blood is not backing up into my lungs and am truly lucky to be alive. Dr. Pacifico has performed this surgey before and I was lucky to get him. I am 42 years old, my husband is 48 and we have 4 children from 15 months to 24 years old. There is more I could tell you, but I don't know how much you really want to know. I am glad I had the surgery I'm lucky to be alive and I wish you luck.

    nancy

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    [Re: Myectomy: What's in store?]

    Author: Sarah (---.public.svc.webtv.net)

    Date: 04-16-02 01:05

    Andre,

    I had a myectomy in December 2000. I had just turned 18 and had no idea what to expect. It's extremely scary (or maybe i was just a wimp), but it's not as bad afterward as you would expect. It hurts, but you learn real quick how to manage it and how to stay comfortable. I was supposed to be out of work for 8 weeks but I felt well enough after 3. About the scar...it's not too bad either. I went to a dermatologist (I also had an ICD put in at the same time, so i had a little more scarring than you will). The dermatologist injected cortisone directly into the scar and gradually it got much lighter - you can barely notice it now. Good luck to you - everything will be all right and it will all be worth it

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy: What's in store?]

    Author: nancy (---.tnt1.flat-rock.mi.da.uu.net)

    Date: 04-20-02 21:19

    Andre, We have been checking your posting. How are you doing? Let us know. We care. Warde and Nancy

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy: What's in store?]

    Author: Lori (---.gate6.yokota.attmil.ne.jp)

    Date: 05-10-02 06:49

    How thick does your heart have to be to receive this form of treatment?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Myectomy: What's in store?]

    Author: Lori (---.gate6.yokota.attmil.ne.jp)

    Date: 05-10-02 06:49

    How thick does your heart have to be to receive this form of treatment?
    NOTE: This is a post from the previous forum message board.

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