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Hi -- I am Sonja and I will soon be getting an ICD

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Sonya I am a mother of 4 kids ages 18, 16, 9 & 6. Find out more about Sonya
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  • Hi -- I am Sonja and I will soon be getting an ICD

    hI,

    i WAS WONDERING, I am new to this site as well, I have been told that I might have to get an ICD implanted. I wore a houlter monitor and it caught that I was having venticular etobic beats and that I should get this implant? Did you have the same thing? Do you have an ICD? What happened, what was the procedure? What symptoms did you have prior to getting the implant? Does it make a difference? As you can probably tell I am nervous about it.

    Sonya
    Sonya
    HCM- Diagnosed at age 27
    ICD - Implanted Feb 9, 2012

  • #2
    Re: Hi -- I am Sonja and I will soon be getting an ICD

    Hi Sonja,

    I moved your post to a forum where it will stand out and won't get lost in that other string.

    If you read the older posts in this forum you will find lots of info. about ICDs. There are basically 5 risk factors that doctors evaluate to see if you need an ICD. If you read the archives, you will find what they are. Also, you will see lots of others who have had the same questions.

    http://www.4hcm.org/forums/showthrea...ors#post101095

    If you read the above string, you will find the info. you are looking for. I had to leave quickly before, so I came back and edited to include the info.
    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
      Re: Hi -- I am Sonja and I will soon be getting an ICD

      Hi Sonja! Welcome to the HCMA and the message board. No need to panic or be nervouse about the ICD (I know, easier said than done). The procedure is very easy (a piece of cake in my opinion), with minimal discomfort afterwards. I think it is harder for our minds to deal with it ,than our body.

      Like Cyn, I encourage you to read older posts on this topic. There, you will find other peoples experiences and will have your questions answered. To do that, just click on the "Devices (ICD,Pacer)" heading at either the top of this page or back on the main page of the message board with all the topics listed.

      Welcome !!!!!
      Linda
      Onward and Upward !

      Diagnosed 4/07 HCM with fixed & dynamic obstruction
      Myectomy with resected cordonae tendonae 4/08 CCF
      ICD 10/08

      Comment


      • #4
        Re: Hi -- I am Sonja and I will soon be getting an ICD

        Hi Sonja,
        I have had my ICD since September of 08. I had no symptoms before my implant, the only reaso I got it was because I had a mother with HCM who suffered a sudden cardiac arrest- she survived, thank God, but because of that, it was suggested to me after my diagnosis a year ago that I get one as well. I have a very small septum, about 1.3cm, and for the most part, no symptoms.

        I love having my ICD and the procedure was a piece of cake- recovery was easy except the not being able to lift your arm above shoulder level for a month. Otherwise, no biggie whatsoever.

        Good luck!

        Comment


        • #5
          Re: Hi -- I am Sonja and I will soon be getting an ICD

          I had my installed on Valentines day last year. I had to prove to my wife that I really do have a heart! So its been over a year now & I really do forget its there. I travel a lot & that kind of reminds every time I go through security.
          It was a wee bit sore for the first few week or so, but nothing that advil & ice-packs couldn't help with.

          There is lots of info here on the site, so look around and you'll get all the answers you need.
          Marc
          Diagnosed @ 48
          Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
          Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
          AICD - Valentines Day '08, Spark Plug replaced 11/14
          After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
          Quietly going insane . . .

          Comment


          • #6
            Re: Hi -- I am Sonja and I will soon be getting an ICD

            I got my ICD 2 years ago. I am glad I have it. I have alot of ventricular tachycardia which is why I got it. It is a dangerous rythm that can go into V Fib which is almost always fatal. I did seem to have some complication where I had severe chest pain and couldn't lay down after I got my ICD for a good week or 10 days but that must be very rare because I have never heard anyone else have that problem. I do not know what caused that but I hope when I have to go for a replacement that it doesn't happen again! I have alot of symptoms from hocm. And I have had alot of syncope and blacking out and near blackouts so I need my ICD.

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            • #7
              Re: Hi -- I am Sonja and I will soon be getting an ICD

              Personally, it was much harder mentally than physically.
              Im in the same boat as Kaye (mandksiders)
              But my Mother passed away at 48. Wish they would have put in ICDs back then.
              One tip....buy shirts that are botton up in the front. You'll need them after surgery for a week or so.
              You'll be fine and before you know it, you wont even notice it. Honestly.
              It will be one year for me in a few weeks.
              Take care
              peace
              mariab

              Comment


              • #8
                Re: Hi -- I am Sonja and I will soon be getting an ICD

                Hi Sonya: Welcome to HCMA! I just want to say good luck if you do indeed get an ICD. I've had mine implanted now for 4 years and I am glad I did it. I too was nervous about getting one. To relieve my anxiety over it, I made sure to do all the research and ask all the questions necessary. I met the surgeon and took a look at his background and experience. I also researched the device and the pros and cons of having the ICD. (The Internet is a wonderful tool for that!) I also got three opinions on it and spoke to a primary care physician about it for his perspective. I also did some soul searching about the life changes this constant reminder would bring. And you know what, after all that, I am glad I made the decision to go ahead and get one. 4 years later there have been no issues with having the device implanted and no issues with my life changing at all, but I feel I've resolved other issues that would have lingered if I didn't go ahead and get one. And that brings me the best comfort of all. Good luck to you.
                Domenick
                All the best!
                Warm Regards,
                Domenick

                ---------------------------------------------------
                Diagnosed with IHSS/HCM at age 12; implanted with IACD at age 33 (July 26, 2005) due to HCM with left ventricular hypertrophy measuring > 33mm (with no obstruction).
                __sigpic___________________________________________

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                • #9
                  Re: Hi -- I am Sonja and I will soon be getting an ICD

                  Originally posted by Domenick View Post
                  Hi Sonya: Welcome to HCMA! I just want to say good luck if you do indeed get an ICD. I've had mine implanted now for 4 years and I am glad I did it. I too was nervous about getting one. To relieve my anxiety over it, I made sure to do all the research and ask all the questions necessary. I met the surgeon and took a look at his background and experience. I also researched the device and the pros and cons of having the ICD. (The Internet is a wonderful tool for that!) I also got three opinions on it and spoke to a primary care physician about it for his perspective. I also did some soul searching about the life changes this constant reminder would bring. And you know what, after all that, I am glad I made the decision to go ahead and get one. 4 years later there have been no issues with having the device implanted and no issues with my life changing at all, but I feel I've resolved other issues that would have lingered if I didn't go ahead and get one. And that brings me the best comfort of all. Good luck to you.
                  Domenick
                  Thanks for your post, Sonya! I, too, will soon be getting an ICD, and was very anxious, so much so that I call it "freaking out", although I consider myself a very physically & emotionally strong person. BUT after having read these replies, & consulting w/all my Drs (sounds like a new soap opera, lol!) I personally feel it is a no-brainer to get an ICD. Wishing you all the best & a quick recovery to boot, Best always, Cheryl
                  Family history of HCM and SCD
                  Multiple symptoms but misdiagnosed over the years
                  Finally, diagnosed correctly after multiple tests
                  HCM gene test positive June 2009
                  Single lead ICD implant July 8, 2009
                  Dual lead ICD replaced May 2013

                  Comment


                  • #10
                    Re: Hi -- I am Sonja and I will soon be getting an ICD

                    Welcome Sonya.. very appropriate to be nervous at first . Each of us have had our own way of dealing but getting one is protection and somehow that is comforting in many ways.
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: Hi -- I am Sonja and I will soon be getting an ICD

                      I for one never had a choice in the matter. I found out I had a very bad heart last spring and before I could even meet with a specialist to discuss the possiblity of getting a pacemaker my heart stopped working. That was last August.

                      I was in the ICU and they wouldn't let me leave until the ICD was put in.
                      Since I've got it and went on the beta blockers they say I've had lots of minor episodes but I was told that people with out any heart problems get them too.

                      So far the ICD hasn't had to shock me (knock on wood) and I hope it never has to do so.

                      If you are taking any statin drugs I would suggest that you start taking some Coenzyme Q10. I did and I get a lot fewer PVCs now and my heart is beating slower too.

                      I wish you the best

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