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Still leery about an ICD implant.

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Kushal Find out more about Kushal
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  • Still leery about an ICD implant.

    Please somebody give me some advice.

    I have been advised By Dr. Maron and Sherrid to have an ICD implanted.

    Here is my HCMA history:

    I have been diagnosed of this condition in December 1997. My septal wall thickness is around 30 mm. I have symptoms like shortness of breath (particularly after heavy meals), occasional palpitations and very rarely syncope (which I attribute to spondylosis).

    I know it is prudent for me to have this done, however, I feel shaky about the life after. After reading all the reports about ICD misfiring, battery failure, I have procrastinated this procedure for quite some time.

    Any thoughts on whether I must do it and where?

    Thanks and regards,
    Kushal.
    First symptom of SOB and angina in October of 1997.
    Diagnosed with HCM in December of 1997.
    Been on Metoprolol almost always since then.
    SCA on October 10, 2012.
    Was in ICU for 9 days at St. David's Hospital in downtown Austin.
    Underwent ICD implantation on October 17, 2012 by Dr. Shane Bailey.
    Underwent Septal Myectomy and Mitral Valve repair on December 11, 2014 by Dr. Smedira
    Underwent ICD/Pacemaker upgrade on December 16, 2014 by Dr. Mayuga.

  • #2
    If I had been advised by those doctors that I needed an ICD, I would got one A.S.A.P.

    I got an ICD on the advice of 4 different doctors because I was also reluctant so I got 3 second opinions, all of whom agreed that I needed it, and then I wound up getting the ICD implanted by yet another doctor (2 of the 3 second opinions were not EP doctors and couldn't implant the ICD themselves) because I wasn't comfortable with my first E.P.

    My advice is to get a recommendation for an E.P. from whichever doctor you trust the most and feel comfortable with. You need to pick one that is close enough to you so you can go be checked every few months.

    As far as what it is like once you have the device, its no biggie at all. I say this even having had my device replaced a couple of weeks ago after only two years due to a defective device recall. The pain after implantation is minimal. I have never been shocked and other than this premature replacement, haven't had any complications. I forget that it is even there. The peace of mind that it gives me is worth any small amount of pain I had to go through to get it. I used to worry about dying of an arrythmia every time my heart would jump a little bit. Now I just sit back and know that it will be ok.

    Good luck.
    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


    • #3
      Hi. You have gotten the opinions of 2 very well-respected experts on HCM. They are in agreement. That would be enough for me. You have at least 2 of the 5 major risk factors, which are your septal measurement and the syncope. I hope you reconsider and get the ICD.

      Reenie
      Reenie

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

      Comment


      • #4
        Coming from a person who has had an implantable device since 1992 and having been subject to one programming recall and one device failure which required a new device to be implanted right away... I would say 110% - get one ASAP and I can assure you that life with a device is really not significantly different then life without a device...except you know you are really protected against SD.

        You have heard from 2 great docs in the field - they know what they are talking about - I would suggest you listen to them.

        If you need anything - call the office.

        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


        • #5
          Hi Kushal,
          I would like to relate an analogous story, and see if it will help you figure things out.

          There were three brothers who were trapeze artists and were at the peak of their profession. In fact they were performing feats of extraordinary daring, and they worked without a net. One day Jake had a slight mishap but the results were disastrous since he fell to his death.

          After the mourning period Jimmy was intent on working with a net, and had one set up before he returned to the top of the tent. One day Jimmy too had a slight mishap which resulted in a fall, but since he had that safety net he did not die. He did however fall into the net incorrectly and broke two fingers in the process. They hurt Jimmy quite a bit, but in time they did heal, and Jimmy returned to the top of the tent, only slightly the worse for wear.

          And now we come to John. He does not want to die as his brother Jake did, but he also does not want to risk breaking his fingers by falling into the net incorrectly. He can’t quit the circus as that is his life, so he must make a choice one way or the other.

          What would you advise him to do - safety net or hard floor?
          Burt

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          • #6
            Kushal.

            I echo the above opinions. The process of the implant and the minimal doscomfort are nothing compared with the prospect of watching my kids grow up and being there - providing I don't die from somethig else.

            Peace,

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

            Comment


            • #7
              Kushal,

              "the reports about ICD misfiring, battery failure", etc, - these things are real stand-outs to us. They are the exception rather than the rule. We also get excited about the people who have been saved by their ICD's. Just remember that the people who have no problems with the device are in the majority, going about their lives, and probably not posting here very often, if ever.

              Best wishes as you work thru this whole thing. The idea of your heart being in need of such a device is a lot to accept. The peace of mind in knowing you have the safety net will help to balance it all. Please keep us posted. Linda

              Comment


              • #8
                GET IT! I have one, my mom has one and it's saved her life!!!! ABSOLUTELY, POSITIVELY GET AN ICD!

                Comment


                • #9
                  Yes, get an ICD. I participated on a webboard for those with ICDs. There were misfirings for sure. But my feeling is that many of those people had other problems than HCM. And maybe also some pretty crazy doctors. We just don't get that many misfirings reported here---or that many firings, as a matter of fact. I have had my ICD for about three years and have had only one firing. It wasn't fun (tho it wasn't awful; felt like a kick in the back) but it saved my life. Most of the time I am completely unaware of it. I love my ICD!

                  Sue

                  Comment


                  • #10
                    I have one, I highly suggest that you get one.
                    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.

                    Comment


                    • #11
                      Just letting you know my 12 year old son just got one put in on Tuesday. As soon as we had seen the doctors last Friday, they had recommended that James go ahead and get one. We came back to the room and was watching the news and heard where a 16 year old basketball player died suddenly on the court. They had gotten the autopsy report and discovered he had HOCM. James looked at me and said "mom, I don't want to die". He understood that this would not allow him to suddenly die like that 16 year old kid.

                      THe surgery was Tuesday and we went to Boston to have it done. Today is Thursday and we are already back home in Georgia. He is doing great and said it feels so good not to worry about suddenly dieing. As his mother and as a family member it has given me great peace of mind as well. So this will not only be just for you but it will also help your family know that you will be around for a long time. I know that it is a huge step, but it is one to make sure that you will be around for a long time to make many more huge steps in your life.

                      Good luck to you!

                      Janet and James
                      My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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