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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • Home Again

    Hi Everyone!
    I tolerated my ICD implant on Tuesday fairly well. For a couple of days I felt very washed out, but the pain has been minimal. Like I told a friend, “it feels like I zipped of a pair of pants that are two sizes too small.” I will take about a week off from work just to make sure I and not pushing things too much. I can already tell that as the pain subsides I reach up with my left had without thinking. I should probably use a sling just to keep me from doing that.

    The EP study confirmed that I really need this device. The cardiologist stated my, “heart was easily stimulated into both V-tach and V-fib.” I was surprised to learn that I received a duel chamber device. I had understood that I would receive a single lead ICD. When I go back to see the Dr. I will ask about that. I recall reading about a study that seemed to indicate the duel chamber devices might not serve us as well as they had hoped.

    I was out when they tested the device, but I can actually remember being jolted awake for a few seconds. Whatever they use to make you sleep sure made life seem like a lot of fun. I even had conversations afterward that I don’t really remember.

    So tell me. When the pacing kicks in what does one feel?

    Peace,
    Leon Miller
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

  • #2
    Leon , they probably used verced to make you so happy and I also have had a good time while under on verced. nurses know they can mess with you while you are on it so some of them feel like its a good chanc efor a laugh Glad you are doing well after your procedure keep it up and good luck Rich
    Allways remember you cannot control the wind!!
    However you can adjust your sails!!

    Comment


    • #3
      Hi there. I'm glad you tolerated the procedure so well. I thought you would.. As far as the pacing goes, you kinda feel a weird sensation in your chest. My husband describes it as unsettling, but not hurting. And remember to not lift your arm for a while!

      Reenie
      Reenie

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

      Comment


      • #4
        EP Study and ICD?

        Hi Leon,

        I just read your post, and I noticed that one of if not the main criteria for getting your ICD was a positive EP Study.

        I was wondering, if you don't mind me asking, what were your other risk factors for an ICD. Also, did you see an HCM specialist who recommended that you have an EP study, or did you have your regular doctor recommend same?

        I ask all of these questions because I myself am in the position of deciding whether I need an ICD. My regular doctor wanted to do an EP study, but I have had 3 2nd opinions (or actually a 2nd, 3rd and 4th) and none of these think an EP study is going to give any more info. 2 vote for the ICD, one votes no and to complicate matters, I need to have serial MRIs for follow up for a brain tumor I had removed last year, so I can't go forward until I have clearance from neurosurgeon AND I decide that its really necessary.

        Please, if you don't mind, tell me what went into your decisionmaking process.

        Thanks.

        Cynthia
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

        Comment


        • #5
          ICD decision

          Hi Cynthia. Glad you asked those questions. Here are some of the factors that were importantr to me.

          1: Family history. I have had 3 second cousins die suddenly and know of 3 others who have HCM. All of those who died were in their 20’s & 30’s. My father died with V-fib and others in this wing of the family have had rhythm issues. That puts me in a fairly high risk situation having HCM.

          2: After playing volleyball one day I started losing consciousness. I had 3 episodes of syncope that day after I had stopped playing. That also puts me in a high-risk category.

          3: My septum is at 3 cm. That alone is a risk factor.

          I have had a history of PVC’s and wound up in the hospital in September because of such an erratic heartbeat. My primary cardiologist and his EP partner recommended that I go this route. I called Lisa and got the name of a HCM knowledgeable cardiologist near by and went to see him. Based on all the details, he also recommended that I should receive an ICD. That made the decision pretty clear, yet a part of me wondered. After the results of the EP study, I was very happy to go through the procedure and receive this thing. The morning after the implant the Dr. came to see me and said, “You have given your family a precious gift in that you will be around for a while.”

          Lisa can give you more clinical details of what constitutes risk factors. Give her a call or an e-mail.

          Peace as you make your decision,
          Leon
          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness

          Comment


          • #6
            More Clarifications

            Hi again Leon,

            O.K. More questions.....how old are you? Had you ever had any syncopal episodes before?

            Also, did you have the EP study AFTER the ICD was implanted to test it, or did you have the EP study before the ICD to help you decide whether to have it placed?

            By the way, I have spoken to Lisa repeatedly, and have seen 3 HCM "specialists" in the last few weeks. (I live in Los Angeles where there are lots of docs know know more than the average about HCM, but they are not Barry Maron either.) The one I saw yesterday was the one she recommended the most highly, and he doesn't think I need an ICD now, but is running more tests. The problem is that 1 other doc wants to do a diagnostic EP study and then decide if I need an ICD. 2 others think I should get it, and one thinks I don't.

            Add that to the MRI compatibility issue, and I have one BIG mess.

            By the way, I agree that your docs did absolutely the right thing by recommending an ICD. My risk factors are much murkier and thus all of the disaccord between the doctors. Add that to the brain tumor issue, and needless to say, I am not in a huge hurry to implant an ICD until they can reconcile the need for MRIs with the need for a pacemaker/ICDs.

            Thanks again for sharing your experience.

            Cynthia
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

            Comment

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