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My mom is up for a Myectomy... What can we expect?

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  • Lisa Salberg
    replied
    Ronnie,
    The majority of myectomies are a one shot deal - a minority may need to be redone for many reasons - 1-age if you are very young (a child) the heart is still growing and thus a need for a 2nd procedure. 2- some are not done right the 1st time - thus need to be re-done 3. some very rare adults need to be redone althought I am only aware of 1 such case in an adult.

    One is normally the number

    Lisa

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  • Ronnie
    replied
    Carol/Perri (Perri is a very "cute" name, if that's your 1st name)
    I don't understand! I was of the thinking that 1 Myectomy was all anyone ever had. I think (not frequently) my Dr told me I would not ever need another Myectomy, that 1 is all you ever need.
    Could you expllain? Did your 1st Surgeon do a bad job?
    I don't plan to add this to my "worry list", but I'm very curious.

    Leave a comment:


  • Ralph
    replied
    Jim, I hope it takes this time for good, or they can find a good Rx to help. I don't blame you wanting to stay off the amioderone. I was on it last year after my surgery until I went into sinus rhythm, thank God! I now am on atenolol 50mg and am doing well. I do have some mild PVC's but nothing like I had prior to surgery. My a-fib/flutter stopped very soon after I got out of CCF. It began with surgery March 18, 2004 and I left CCF April 15th.

    Hang in there and I'm praying for good results.

    Ralph

    Leave a comment:


  • Eileen2345
    replied
    Jim,

    Oh no, not again. I hope this one works for good!

    Please let us know how you are doing when you can.

    Well wishes,

    Eve

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  • Linda
    replied
    Jim, Best wishes, please keep us posted - Linda

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  • Proximus
    replied
    Guess what!
    I'm back in a-fib. Time for another cardioversion in the morning, then my doctor is going to start me on some rhythm meds. She didn't tell me what yet--just said that she didn't want me on Amiodarone. Hope it works.

    -Jim

    Leave a comment:


  • Burton Borrok
    replied
    Yeah,
    I’m a handsome fellow - - I keep telling myself. Now if I could only talk myself into being rich, - now that would be a feat. Well, maybe one day I will win the lottery.

    It really is nice to have you with us on the board. Tell you what – go heal up fast, grab your husband and go on vacation to Las Vegas, and let’s go out to eat or something. I bet we could have a real fun time.

    OK, Ready? One, Two, Three – start healing.
    Burt

    Leave a comment:


  • Perri Carol
    replied
    Dear Burt, Ralph and Linda, et. al.
    THANK YOU FOR SUCH A WARM WELCOME! It is comforting to know you are all out there. Really. Burt, you asked about how it was like to have the myomectomy the first time when I was 35. At that time my two boys were 4 and 6. My husband is a physician. Amazingly enough, he really didn't appreciate how debilitating this illness can be. I think because we are not bleeding, limping, or have a rash or something visible, people find it hard to accept that a person is fatigued, dizzy or short of breath, etc. I think he thought I was exaggerating. When the surgeon came out and told him that after they got in and saw how bad it was inside, (the echos don't always reveal the true extent of things, apparently) the doc asked my husband how I got through the day, how I lifted my babies, climbed stairs, etc. Then and only then did my husband "get it."
    I had help from family and a home health aid for the first week.
    I must admit that the first time you are left alone at home after surgery is a bit scary. I kept thinking my heart was going to stop or I would "blow a fuse" or something and no one would be there. I was very afraid. It takes a while to overcome that. You stop listening for each beat, and you get on with living. It is just another stage to overcome, and remember it will pass.
    Burt, I like your smile in your photo!
    Look forward to chatting with you all again soon.
    Perri

    Leave a comment:


  • Burton Borrok
    replied
    Welcome,
    Is it Perri Carol or is it Carol Perri? I get so confused sometimes I don’t know if I’m coming or going. In any case, you are very welcome here. Since you readily admit to forty seven I expect your children are not ‘under foot’ any longer, but how did you cope with your first myectomy when you were only thirty five? It must have been an ‘interesting’ time.

    I enjoyed reading your post as it was informative, lucid, friendly and honest. You must be quite a girl. (Sorry - woman – but that’s another story.) I’m very glad you found us and like the place. Let’s hope we hear a lot more from you in the future. Your more then welcome to research any and all info here (there’s a lot), post comments, ask questions, blow off some steam when you have to, or just chat with friends when you’re in the mood.

    Take care, feel better and better, and keep in touch –
    Burt

    Leave a comment:


  • Ralph
    replied
    Welcome aboard! I'm sure you'll find HCMA a great place to get information and comfort. Without HCMA I don't think I would have had my myectomy last March and might not even be here today. I'm doing great and you still have some healing to do. You had lots of work done and it may take some time to begin to really feel "better" again.

    Ralph

    Leave a comment:


  • Linda
    replied
    Perri, Welcome - Glad you've found us. Thanks for sharing your story, looking forward to hearing more from you. Linda

    Leave a comment:


  • Perri Carol
    replied
    Good luck and here's my story

    Jim,
    GOOD LUCK TO YOU AND YOUR MOM! I am a new member to HCM. I am 47 years old, mother of two. I had a myomectomy when I was 35. Unfortunately, the damn thing grew back (I had a subaortic membrane as well), much to everyone's amazement. I felt good for 10 years, then this last year I deteriorated rapidly. My local docs thought I was just a complainer and said I was "getting Old" that's why I was tired, and stuff like that.
    Anyway, due to the membrane/muscle regrowth, it ruined my aortic valve, and I had an aortic valve replacement and another myomectomy in August 2004. I had it done at Mt. Sinai Hospital in Manhattan by Dr. David Adams. A brilliant (and nice!) guy.
    Recovery the second time around was harder than the first. Second time I was in surgery for 9 hours. ugh. Took me longer to get back on my feet. Feeling better than I did before, but not quite what I thought I would be (yet). I remain optomistic when I can.
    Thank god for this chat room, I wish I knew of it earlier. I feel so alone in this so often. Now I have a place to go.
    Tips for those of you getting a myomectomy:
    -make sure you have help when you get home. they throw you out of the hospital so fast these days...you will need help, don't be afraid to ask for it. after a week at home you will be more independent and won't need that help.
    -listen to your body. if you need a nap, take it. don't push yourself after surgery.
    -don't obsess with the ventilator etc. you won't remember most of the experience because you are so doped up. just keep thinking about how much better you will feel in a few days.
    -after my first operation, i felt IMMEDIATELY better, even though i had all those tubes and things hanging from every where. this is comforting.

    what gets me depressed is the long term stuff. i am trying to focus on day to day. i will save that for another chat time, when i need a hug from you all. today is a good day, i am glad i have found this site.

    Leave a comment:


  • Eileen2345
    replied
    Jim,

    I am so glad the cardioversion worked and that you are feeling better. That A-fib is the pits.

    Well wishes to you and your mom.


    Eve

    Leave a comment:


  • Ralph
    replied
    Very happy to hear the cardiovert helped. I hope all continues to go well for you.

    Leave a comment:


  • shirleymahoney
    replied
    Jim that is great news!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Shirley

    Leave a comment:

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