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  • what to expect from ICD

    I am (apparently) going to have to get an ICD now. My EF has dropped off another 5% in the last 5 months down to 35. My symptoms have returned to a large degree even though I still feel better than prior to my myectomy. They changed my drugs again upping my ACE and tossing Verapamil and adding Atenolol. Anyway, my question is, what can I expect when getting this dang thing? How long should I be out of work? I am a scientist and have no physical components to my job, I sit on a microscope all day basically. The hardest part for me is my commute in. I don't want to miss any work at all but read that I will probably be in overnight for the implant. How long should I take after that to recover? Any advise here is appreciated.

    Doug
    NEMC's (Boston) First Myectomy 7-22-2003

  • #2
    Doug.

    The procedure and recovery is not that big a deal. You will probably be off work several days and they will tell you not to raise your left arm above your head for 4-6 weeks. Other than that it was a relatively easy procedure. I hope it will be the same for you.

    Some people have complications and extra pain, but most, it seems, do well. I wish you much health and a long prosperous life.


    Peace,

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

    Comment


    • #3
      Doug,

      I guess the time has come and you must join the club . Think of it that way.
      Leon has summed it up well for you. I think it will go fairly well for you because you have a positive outlook. About 2-3 days out of the loop and you'll gradually feel better . Just keep that arm down is the big deal. I did not find the pain very bad at all .

      Keep us posted , we are all here for you.

      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


      • #4
        Doug, Best wishes, thinking of you, Linda

        Comment


        • #5
          yeah Doug piece of cake. I was out doing EMT clinicals the next week. Not recommended but I accomplished it.

          mary S.

          Comment


          • #6
            Hey Doug!

            They're right! Not much to it. After a few weeks you will start to forget it's even there. Keeping the left arm down is important so the leads stay in place.

            And if I may be so bold, your health is far more important than your work. If you don't believe me, just ask your family. *smile*

            You'll do just fine! My thoughts and prayers are with you!

            Hugs, Terry

            Comment


            • #7
              Doug, it is not that bad and I think you shold be back to your old self soon. You get to stay in the hospital for the night and have someone drive you around for a bit. You may need to look into your states laws about driving after getting your ICD.

              Let us know when you are having it put in and then let us know how it goes.
              Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

              Comment


              • #8
                Doug-

                Those words make it sound as if you are reluctant. Still not sold on the idea uhhh? Hey, I do know that feeling.

                Upping the dose of Lisinopril is part of the drug strategy Dr Udeslson mentioned to me in September. He also indicated that Verapamil would be the first to go if changes in my meds were necessary down the road. Does Atenolol make for a second beta-blocker for you?

                My continued hesitation about getting the implant has little to do with going through that initial procedure. My wife is convinced I’m just being a big wusse (sp?), but I’m sure I can handle that part just fine. Being in full time a-fib, as I am, is the issue that concerns me. No one has been able to convince me that an ICD really can sense the difference between harmless a-fib and dangerous v-fib. I will be a most unhappy customer if I find out the hard way that I am just going to have to live with being zapped 6 times a week for no good reason.

                Also – now how’s this for a thinking man’s strategy??

                Now that I’ve been through the genetic testing (mutation located), I’m hoping that all or most of my relatives decide to get tested. When we learn that indeed the gene is elsewhere in the family I can then proudly point to the long list of ancestors who have survived well into their 80’s and 90’s and of course I will also be able to mention the fact that there really is no evidence of a sudden death in this group. Everybody’s nodding their head – does that mean you agree?

                As you can see, I’m checking every angle pretty darn close.

                Keep us posted – and wishing you good luck.
                • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                • 2011: Brigham & Women’s - Medtronic ICD implant

                Comment


                • #9
                  Hi Boz.

                  As one who has both an ICD and bouts of a-fib, let me assure you that I have never been inappropriately jolted. Several times I have had non-sustained v-tach, that came within milliseconds of initiating therapy, but thus far my device has known the difference and never shocked me with a-fib.

                  I trust you will remain healthy whichever option you go with.

                  Peace,

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

                  Comment


                  • #10
                    Doug,

                    I'm looking at your question from perspective of very recent experience. This is Saturday and I had my AICD implanted on Tuesday.

                    The implant was Tuesday and I left the hospital on Wed. AM. I was totally wiped-out Wed. ("day 1") largely due to lack of sleep (the hospital is no place for sick people to get any sleep). The Dr. rx'd vicodan which is what I got for pain in the hospital, even though Tylenol probably would have been sufficient.

                    You won't want to move your left arm much at all on days 1 and 2 because of sore muscles--I think they get tweaked around pretty hard in surgery. You'll want to keep the strain down to a minimum.

                    You'll need to wear button-up shirts, not polo shirts or t-shirts, because you can't lift your arm up over your head (or even to shoulder height) to get a pull-over on.

                    For showering, get some plastic wrap (the tinted variety is useful) and some waterproof tape (wider is better) and recruit help to put wrap over the top of the shoulder and down over bandage and then tape down the wrap edges. (Don't worry about hair, as there won't be any there.)

                    I was able to drive some to one of the kids' school and back but was wiped-out afterward on day 2. I used a large paper clamp on the seat belt retractor to keep the belt off my left shoulder. Opening and closing the driver's door was a bit of an issue.

                    I might have considered returning to work on Day 3, but only part-time and for really limited activities (not my current problem, though, as I'm out on disability since the beginning of the year).

                    Day 4 (today) I've started to feel a little more like a human being. The past day or two my neck has been sore from compensating for the shoulder muscles. A cold pack on the neck really helps.

                    All-in-all, it's a Tylenol experience.

                    Boz--I'm also in chronic a-fib and haven't been zapped yet except for the test while I was "out".! In fact, I only have one lead implanted (Right Ventricle) because there's no need (?) or ability (?) to pace via the atrium. The device will pace me out of bradycardia and attempt to pace me out of V-tach before defibrilating. De-fib for V-tach and V-fib is supposed to use progressive energy levels, however the EP says that even the lowest energy level is quite a noticeable experience.

                    Good Luck!
                    Rob Thomas
                    --Living life on the edge .. of a continent!
                    Charter member: Tinman Club

                    Comment


                    • #11
                      Thanks for all of your replies.

                      Boz, right on the money, not convinced. To be honest I just want to ignore the entire issue and forget about it as it has taken over every fiber of my existence. I even had to sell my dads 1948 Chevy he left me when he passed away 2 years ago because I just can't take care of it with my level of energy. I promised him that I would have it until I died and had to break that promise. I am crushed about that.

                      I suspect I am heading toward transplant and don't think I can do that. I think there are times when you just have to say enough. That is a personal decision and everyone has a different opinion on that one.

                      Regarding the AICD. I don't want it but guess it is time to go forward with it. I do appreciate the input and it sounds like I will have to curtail my house remodeling for a few days (OK weeks) and park it on the sofa.

                      So when they are ready I will go ahead and get the darn thing and make sure my netflix queue is full for the week. Thanks for your input everyone. I will update you when I have a firm commitment.

                      Many thanks,
                      Doug
                      NEMC's (Boston) First Myectomy 7-22-2003

                      Comment


                      • #12
                        If you visit Jon Duffey’s Zapper BBS you’ll find plenty of chatter about life with an ACID. There is a member/regular there named Allan who happens to be a physician and has had his own defibrillator for 12 years now.

                        He wrote a very informative post describing the surgical process of implanting a device and the healing process that follows. Some may not wish to know such details, but if you do jump over there and search for a post (Nov2004) titled – “how long does it take to get used to this 'thing"?

                        Doug- I don’t think you want to focus on the prospects of a heart transplant at this point. If it is in your future, I bet it is many years away. I’ll tell you what. I’ll be in to visit you after this all takes place. So you gotta keep us posted.
                        • 1995: Brigham & Women’s Hospital - diagnosed with Atrial Fibrillation
                        • 2004: Falkner Hospital – diagnosed with Congestive Heart Failure
                        • 2004: Tufts NEMC– diagnosed with “End Stage” Hypertrophic Cardiomyopathy
                        • 2005: Genetic Test – Laboratory for Molecular Medicine. HCM confirmed – missense mutation detected in TNNT2 gene
                        • 2009: Brigham & Women’s - Third cardioversion begin Amiodarone for AFib
                        • 2011: Brigham & Women’s - Medtronic ICD implant

                        Comment


                        • #13
                          Boz,

                          I would love a visit. When I do go in if you can spare the time I would greatly appreciate a short time to chat. I will let you know when it happens.

                          Best regards,

                          Doug
                          NEMC's (Boston) First Myectomy 7-22-2003

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