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

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  • #31
    Why didn't the doctors order a echo EKG to determine if she needs a myectomy?

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    • #32
      They're going to do all of that while she's in the hospital, and if she needs one they'll take care of it while they're doing the Cox-Maze procedure.

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      • #33
        Well, the Amiodarone didn't work, so I ended up getting a cardioversion on Friday. Got a couple burn marks where the pads were, but I don't care. I feel better!

        -Jim

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        • #34
          I'm sorry that the meds didn't work, but am glad you're feeling better now. I hope you stay in sinus rhythm from now on.

          Reenie
          Reenie

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

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          • #35
            Jim that is great news!!!!!!!!!!!!!!!!!!!!!!!!!!!

            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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            • #36
              Very happy to hear the cardiovert helped. I hope all continues to go well for you.

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              • #37
                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
                49 yrs. old
                Diagnosed at 31.
                Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                My brother passed away suddenly at 34 yrs old from HCM.
                2 teenage children, ages 17 and 15.

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                • #38
                  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.
                  I am 47 yr old female, mother of two. I have had two myomectomies and an aortic valve replacement.

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                  • #39
                    Perri, Welcome - Glad you've found us. Thanks for sharing your story, looking forward to hearing more from you. Linda

                    Comment


                    • #40
                      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

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                      • #41
                        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

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                        • #42
                          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
                          I am 47 yr old female, mother of two. I have had two myomectomies and an aortic valve replacement.

                          Comment


                          • #43
                            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

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                            • #44
                              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

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                              • #45
                                Jim, Best wishes, please keep us posted - Linda

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