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  • ICD Questions

    I was told in May by an HCM specialist that I should have an ICD put in. Needless to say its not something I am not excited about. I have repeatedly tried to put out of my head the thought of getting it but I look at my son and think what if... My septal measurement is 2.5 - 3 depending on which reading you go by. I dont have many symptoms and my mom is the only other HCMer in my family(that we know of). My grandfather died at 47 of "angina" according to my mom. I know that is a symptom and not a problem but it was in the 50's so they didnt know any better. It could have been HCM could have been my grandma's good ol southern cooking. We will never know.

    Anyway, what I really want to ask is everything you guys can tell me about your ICD experience. Why did you get it? How long have you had it? How bad is the scar? Has it ever fired? How often do you have it interrogated or battery changed? WHat is involved when you do? How long post implant could you drive? How long will it be be before I can play with and lift my 35 pound son? Has anyone given birth after an ICD? What happens if it fires while Im pregnant, would it hurt the baby?

    I am ready to have another baby ASAP and I have been told I can but it would be safer if I had an ICD because of the extra stress on my heart. I really dont want it but, I also dont want to try this and have my son grow up without a Mama or a sibling. My whole family, especially my husband wont give any advice here. Its like if we dont talk about the elephant in the room its not there and Gayle is the same healthy rambunctious person she has always been. Problem is now I know Iam not and I would really like a little advice on whether or not to do this and how will it affect my life? You guys are all I've got here. I appreciate any advice you have.
    2.6 Septal Measurement
    ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
    "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
    ~Steel Magnolia's~

  • #2
    Re: ICD Questions

    Gayle - I don't have time now to post a long response, but search the archives under ICD or defibrillator. You will find alot of answers to all of your questions.

    Bottom line, you can do everything you want. Its a minor inconvenience, but it will give you alot of piece of mind.
    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: ICD Questions

      Dear Gayle:

      I can only tell you what I went through:

      Why I got an ICD? My septum is around 2.5, had symptoms, my brother died at age 23 (13 years ago with 4.0 septum when they did not offer ICDs) and I was scared. Also, my entire family would have beaten me if I didn't do it, well, maybe just be mad at me. A year after having my ICD put in, my mom was diagnosed with a 1.7 septum and had an ICD put in also. Now my 2-1/2 year old niece was just diagnosed two weeks ago with very mild HCM.

      Scar? Yes, about three inches long and it usually doesn't show, but if it does I don't care. I made the choice of being safe.

      Driving? I don't drive much because of a muscle disease, but my doc let me drive a few weeks after. One thing I did for myself was make a white fur pad to cover the seatbelt strap that hits the ICD. Helps with the rubbing issue.

      ICD checks? I go every three months and all they do is hook you up with wires (similar to an EKG) and put a thing that looks like a big computer mouse over the ICD. They test the ICD and tell you if anything has happened since you last were tested. I have a Medtronic and they gave me a card to carry stating I have an ICD, model number, who your doc is and when it was installed.

      Lifting? It was four weeks for me, but nothing over the head for an additional two weeks. Was hard to do this since I bought a house two days after getting the ICD put in and moved four weeks later.

      Having a baby? I had both my girls before being diagnosed, so I have no idea.

      I enjoy knowing I have a safety net, for myself, my husband, my kids and my big family. I have loaned out my book by Lisa and Dr. Maron to many in my family and lots of friends so they understand what is going on in my heart. People around you really need to be educated. It took me many, many years to educate everyone about my muscle disease. It was easier for the HOCM because it was already a part of my family.

      Good luck in your decision making and be well, Janet

      Believe in the goodness of mankind.
      Believe in the goodness of mankind.

      Comment


      • #4
        Re: ICD Questions

        Gayle

        Mine is my best friend, mine has never fired and i've had it now for over a year and a half now, i do fel better with it in and i know one day it may save my life and by the way it shows very little of a scar so if a specialist says you need it you should get it, what have you got to loose, but your life

        Shirley
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          Re: ICD Questions

          My husband has had his ICD for 4 years now. It's never fired. He got it because his septum is really thick. It's really 3.8 cm but at the time they thought it was 5.2 cm. Still, pretty thick any way you look at it. I think he was driving within a week of implant. As far as being pregnant with it, um, we didn't have to find out.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: ICD Questions

            I love my ICD. I drove fairly soon after implant; only problem was seat belt pulling on implantation site. Mine has gone off once in the two years I've had it and, if it hadn't, I probably would have died.

            My father died a sudden death, probably of HCM, but we blamed his life style and were angry at him for not taking better care of himself. If my family knew I had refused an ICD, and then I died suddenly, they would be very angry. I don't want them to feel the way I felt about my dad. I want them to know I cared about them.

            Do it and soon.

            Sue

            Comment


            • #7
              Re: ICD Questions

              Hi Gayle,

              I got my icd this past July. I have been putting it off for two years. Shame on me since I had a brother that died from sudden death at age 41. He wasn't given the choice of a defibrillator since that was in 1989.

              My dad died at age 37 who probably had HCM but in the 1950's they have yet to know of the disease. Grandmother too she lived to age 76.

              I put myself through two years of torment. Wondering if I was waking up or when my heart pounded if it was just going to stop. Too much mental anguish. Went to HCM specialist who woke me up and I finally got mine put in.

              I have not have those thoughts anymore. I feel very reassured with it.

              Recovery could not lift anything for the six weeks. (I can't lift anyway) Cannot raise your arm above your head for six weeks. (arm on same side of implant) Driving not for the first two weeks at least. These are just minor inconviences.

              My scar is not even two inches. I have a meditronic. In fact I won't even have to go to dr. office I have a data reader that I can transmit the information right over the phone. Pretty cool huh? I haven't used it yet.

              The decision is life or life beyond. I choose life once I accepted I had the disease. Thank you Dr. M., for making me face my condition.

              I would love to see my grandchildren grow up. If this thing fires once it was worth the inconviences. If it doesn't fire at all, well it made my stress go away worrying if I was next in the family to have a sudden death event.

              I don't think your decision is hard. You are young and should be fine. Just go for it.

              Comment


              • #8
                Re: ICD Questions

                Hi Gayle,

                I got my ICD about 2 1/2 years ago. It hasn't fired yet, but I'm glad to have it.

                I got it because I passed out in a public place, have a septal measurement of 3.0, have a family history of cardiac arrest, and get dizzy w/exercise.

                I manage a high school cafeteria, and my job is fairly active. Having the ICD gives me a sense a security.

                I get it iterrogated every 3 months at a local hospital, but have an Electrophisiology Dr. that they send the info. to, along with my cardiologist.

                I drove pretty much immediately, although they told me not to, but I had to get to work. Got the ICD on a Thursday, and went back to work Monday. Would not recommend that... it was a bit soon, for a physical job, and I was tired and had pain in the evenings. I still had to be careful about raising my arm and lifting.

                I lead a very normal life... the ICD poses little problem. It's dealing with the HCM symptoms that make it hard., (no marathons, or climbing Pikes Peak, either).

                However, I have had some issues with a lead on the ICD "capturing" other muscles in my body, (you could read some previous posts about that), and did just have my ICD iterrogated today. Some of the previous problems have been recurring, and I may have to have a lead replacement. Bummer... disruption of life... but ultimately, your health comes first, so what you gonna do?

                I hope this answers some of your questions.

                If you are being recommended to get an ICD, I think you should seriously heed your Dr.'s advice. They can save your life.

                Debbie

                Comment


                • #9
                  Re: ICD Questions

                  Oh, you asked about interrogation. They put you on the table in the exam room. Then they put something on the ICD, looks like a large computer mouse. They drape the cord around your neck to keep it from slipping off. It doesn't hurt. My husband's is an ICD/pacer, although it's never paced him. To test the battery strength they pace him. They want to see how much juice that takes.

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    Re: ICD Questions

                    Gayle.

                    I have had a horrible experience with my defibrillator but I have it not because of how I feel about it but because it will save my husband's wife and my kids Mom some day. I won't go into my story but I will tell you that it has not been pleasant but that my situatation is not the norm. The scar is nothing for the price of life and I think your family would agree.

                    So in my not so blunt words it's not necessarily about you, it's about the people around you who love you. I know it's dreadfully scary but we have the tools to help us live longer shouldn't we use them. Please feel free to pm me if you would like to discuss in detail. Take care and listen to the man upstairs because he will never stear you wrong. His plan is divine!!!

                    Beverly

                    Comment


                    • #11
                      Re: ICD Questions

                      Yeh Gayle,

                      Don't hesitate , it really is not a big deal to get used to and it is worth more in assurances then any inconvenience it may cause initially or any cosmetic changes that you see.

                      I got mine March 2001, the interrogations q 3 months are no biggie and you get lots of data besides. One of the 3 month checks for me is a NIPS( done yearly) it is a non invasive programed stimulation. I am put under quick , fast acting anesthesia and then a programmed arrythmia is initiated and they watch my AICD do it's thing. To me it is just a restfull nap and more data is gathered. Most people do not have this done. My EP feels that for a person who has never received a shock( Me ), then she would rather see that the AICD does have a history of responding if needed. She said she will continue to do this until technology allows a different approach.
                      Please give a serious consideration to having one put in ASAP.

                      I too have lost family menmbers who were unaware and did not have a choice to live or die.

                      Pam
                      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


                      • #12
                        Re: ICD Questions

                        Gayle,

                        I've had my ICD for 6 years, just had a replacement, no zaps, mine also paces all the time, doing ddd pacing which I am not thrilled about, (see my other post). Lots of scd in my family, 4 uncle, mother survived scd, I survived scdX1, son (14 now) survived scd at age 10 his icd has revived him 6 times now. He is on his second since his first got infected. Infection is extremely rare but very dangerous, cost him a month in ICU and five more months in hospital. ICD's are easy to live with, HCM itself causes motre issues than icd so the icds are wee worth it.

                        Art

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