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connie Find out more about connie
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  • Ablation.....

    Just thought I would check in and let everyone know it has been 3 weeks since my Septal Alcohol Ablation and I am doing wonderful. I feel better and better everyday. Monday the 10th I started back walking a little at a time, and am able to walk 1/2 mile a day. Well I could do more but my doctor wants me to build up slowly.
    I will be evaluated in april for an ICD and possible implant.
    Well that all for now..........................Connie
    The BEST is yet to come !!

  • #2
    Glad to hear you are feeling well!!

    What is the current concern in terms of the need for an ICD? What are the Dr's waiting on?

    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
      Connie,

      I'm glad you are doing so well. Remember to take it slowly and don't just jump back into activity even if you feel like it. Take care!

      Reenie
      Reenie

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

      Comment


      • #4
        Icd Need.....

        Thanks Reenie and Lisa....

        About the need for an ICD, Dr. Neilsen said that due to my family history of sudden death and the septal thickness being greater than 3 mm...(is that correct...the mm?) and he said one other factor and I cant for the life of me remember what it was. I think it was somthing to do with the PVC's I continue to experience from time to time.
        He had faxed his recomendation down here to my local doctor for further evaluation, but these wonderful doctors around here dont take HCM serious and they wont schedule me for anything. One dident do any thing and the other said if I started having symptoms again it wouldent be worth it to treat it with meds we would just put in an IACD. Im like ....WHAT!!!! O.K. BUDDY...........this is the same Doctor that told me 8 months ago my chest pain was unrelated to my HCM. ha ha ha ......Oh and the third one talked his fool head off to me all about HCM and his opinion and maybe I need to go see my Female Doctor and have a good check up, because at my age I could me experiencing a Harmone imbalance and that is why I have the PVC's. And they all three wanted me to tell them how and why I felt the need to find a Doctor so far off. They were amazed that I had the proceedure. One even told me that he had patients with much worse gradients and thicker septums and were donig fine on meds and not experiencing near the things I said i was. (dont you know guys ALL HCM people are exactly the same).....or this nut thinks so. I told him I dident know why I had such a rough time of it but I had and no one locally would help me so I sought help else where.
        So as far as what we are waiting on ....Im just gonna wait till I go to MUSC in april for my check up and let Dr. Neilsen and Dr. Cawthon take care of the ICD deal. At least there they know HCM and I dont have to fight them about it. I try to remain calm about how I get treated by the CLOSE MINDED IDIOTS I have to deal with here....the bottom line is the dont take me or my HCM serious. Because I dont fit in their criteria of what a truly sick person with HCM is then Im not sick. There was only one of these Doctors that even think HCM is anything serious. Sorry I rambled on so ...but there you have it. There aint a lot to choose from here in south Alabama. Thank god for the one at MUSC. Connie
        The BEST is yet to come !!

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        • #5
          So did that make you feel better Connie
          Just kidding around..cause you know thats what we are here for
          The ICD issue is rather clear... you have 2 risk factors from what you stated and that would make a strong case for an ICD - sooner than later.

          Thats my 2 cents!
          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


          • #6
            much much better!!!!

            HA HA HA ...yes Lisa I feel much lighter for blowing off that steam. Thanks for listening. Connie
            The BEST is yet to come !!

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