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Myectomy imminent!!! Advice Needed

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Kelly&Bert Find out more about Kelly&Bert
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  • Myectomy imminent!!! Advice Needed

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  • #2
    Most people are able to return to work at 8 weeks, some take a little longer, some even less. I am sure some of our members who have "been there" will chime in soon!

    Take care,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Hello & welcome to HCMA.

      I had my myectomy last August 31st. I was diagnosed with HOCM last June and told I needed a myectomy. Within 4 weeks I was barely walking. Prior to diagnosing I had some lightheadedness & shortness of breath.

      After myectomy – Within 3-4 weeks (once my lungs get back to normal & I was walking around the block a few times a day) I not only didn’t have symptoms but I also felt better then I ever felt in the last 25 years. Just taking in a breath of air and feeling it go into my lungs felt different then I ever remembered.

      I was able to work by phone from my home office within a couple of weeks. I was driving in less then 6 weeks, though after 10 minutes I was uncomfortable. I would say that after about 8-10 weeks I felt very good.

      Recovery from open heart is not much different then other major operations with the
      exception of the lungs needing to come back to normal. He body needs its time to heal &
      at 27, you should heal faster then a 49 year old.


      Stuart
      Myectomy at 49.
      Cleveland Myectomy Club
      August 31, 2004

      Comment


      • #4
        Thanks so much for the quick replies...It is reassuring to know that there are other people who have been through this. Its such a big operation but in a strange way Im excited for Bert because I hope this will relieve his symptoms which are awful.

        Thanks again for the replies.

        Comment


        • #5
          Kelly,



          What are his symptoms? What is his history with HOCM?
          Where is his myectomy being done?

          Tell us a little more about Burt.
          Cleveland Myectomy Club
          August 31, 2004

          Comment


          • #6
            Bert is 27 and was diagnosed three years ago after his siter was taken into hospital and they discovered her HCM. His symptoms are breathlessness which is severe..walking from room to room in our home can make him so out of breath you would think he had run a marathon...he gets tired quite easily and I think that for him this is the hardest thing because it limits what he can do. He feels more like 87 than 27. He has had occasional light headed experiences but that is only if he is really pushing himself too much.. Hopefully the myectomy will improve all of these things. we are waiting on an appointment at the London Heart hospital as there are no hospitals in Scotland that can do myectomies...better going wher ethey know what they are doing anyway..

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            • #7
              Those symptoms sound very familiar and I feel great now.
              No symptoms!

              Stuart
              myectomy 8-31-04
              Cleveland Myectomy Club
              August 31, 2004

              Comment


              • #8
                hi there

                Hi - I just had a myectomy here in Cleveland... I am being discharged tomorow hopefully. Will be glad to talk about the whole experiance

                thanks

                Vinnie

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                • #9
                  I had my myectomy done around 7 months ago at Mayo. I was 17 at the time. I returned to school after 3 1/2 weeks. Looking back on it, this was not a good idea because I barely made it through the days, but being lonely at home is no fun either. I can tell the difference in symptoms very much so. I believe that months after your operation, you will be quite happy with your decision. Please feel free to ask any questions you have. Talking with someone who has already been through it can help immensely.

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