If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

ICD fears

Collapse

About the Author

Collapse
thumpy Find out more about thumpy
X
Collapse
 
  • Page of 2
  • Filter
  • Time
  • Show
Clear All
new posts
Previous 1 2 template Next
  • #1

    ICD fears

    Hi, everyone,
    On Monday, my defibrillator fired 6 times. I had never received a shock prior to this incident. Long story short, I had a potassium deficiency which triggered V Tach rather than my usual A Fib.
    The good news is, the device did what it was supposed to do and I'm here to be grateful for that.
    The problem is that the whole experience was extremely traumatic for me and I'm now afraid of this implanted cannon in my chest. Does anyone have a similar experience?
    Not to pat myself on the back, but I'm not generally a fearful person, but now I'm scared. How can I get my confidence back?
    Thanks in advance.
    Tags: None
  • #2
    Re: ICD fears

    Hi. My device has never fired but I am a nurse practitioner in hospital practice and I routinely see those whose have. I think that it is natural to fear this and it really makes me think a lot when I speak to those clients, I have been a little more fearful now that I myself have had NSVT.

    It seems somewhat dismissive to say oh be glad it is there because it saved your life because even though we know that there is still fear involved, I guess getting some time between you and the event and getting back into your normal activities will help, and do know that there are many of us who understand.
    Diagnosed at 23
    ICD 7-2009
    Myectomy at Mayo 11-2009

    Comment

    • #3
      Re: ICD fears

      I guess I don't have any good advice on how to get over the memory of being shocked, except to say that with each passing day, it does get better. I was shocked 9 times in May of 2009, completely out of the blue. I was walking in a parking lot with a co-worker, felt dizzy and then I was on the ground. I'm pretty sure I went through a little bout of depression/anxiety, but I kept it to myself. Looking back, I wish I would have asked for help, but I didn't think anyone understood what I was going through. It was on my mind 24/7. I had a very hard time sleeping. From the moment I woke up until I went asleep, I thought about that thing in my body and feared when it would bring its wrath on me again. And it did (this time only once, thank God) a few months later. But slowly, the fear does start to leave. You start to forget and move on. Its been a year for me now and I can honestly say I rarely think about it. The hardest thing for me is walking through parking lots because it brings me back to that day. I get a little anxious and move a little faster to get to my car!

      Hang in there! I honestly think the mental part of all this is much worse than the physical aspects.

      Comment

      • #4
        Re: ICD fears

        Hi Thumpy,
        My daughter had a myectomy 3 years ago TODAY (YEA!!!), she is celebrating today with a pool party! Anyway, 2 weeks after her myectomy ahe went into A-fib and her device fired 21 times, before they were able to turn it off, she spent 8 days in the ICU before they could get her heart stabilized, and needless to say she wanted that ICD OUT!! She did suffer from PTSD, I did get her counseling, but it didn't help much, she just didn't want to talk about it. Like I said it has been 3 years (she's 12 now) and time is what has helped, she still doesn't like to talk about it but it's getting better. She is due for a new one, she has had this one for 6 years, and I'm hoping when the time comes, all goes smoothly.
        I think counseling is probably a good thing, and a little time, things will get better.
        Jeanne mom to Allison 12, ICD, myectomy w/mitral vavle repair Dr. Dearani

        Comment

        • #5
          Re: ICD fears

          Also my son needed help after traumatic time in the hospital.... We found that Psychotherapy helped most and also doing something new and special "to prove" you can really go on and maximize your potential.
          After our cardiologist gave us his permission, my son also started Therapeutic horseback riding (also known as Equine Assisted Activity or Adaptive Riding) a system that helped also to solve sleeping problems that our son akso had after AICD replacement and other physical, and emotional issues.
          You are not alone! and I agree that time will help, but... I also think it is a good idea to find help soon...
          Wishes for healh, peace and love!

          Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
          Haifa - Israel.

          Comment

          • #6
            Re: ICD fears

            Thumpy, PTSD is a frequent reaction to shock storms. And, serious anxiety isn't uncommon for people who haven't even been shocked yet. I'm no expert, but I know that recovering from the psychological trauma doesn't have much to do with being brave. (To me, you sound plenty brave just from your attitude.) There are therapists who specialize in medical counseling, and anti-anxiety meds, even temporarily, like Ativan etc., help a lot of people. If you're in a big city, maybe a support group (or, online, the ICD Support Group & the ICD User Group) will help.

            Some people replace shock anxiety with bravado ("I never worry about things I can't control") or a sort of blame-the-victim phrasing about attitude ("it will only get you down if you let it") and I don't buy any of it. No disrespect intended to them at all -- whatever works, works -- but if you're not able to shrug it off, you're in the majority, not the minority. Best of luck to you hangin' in there.

            Comment

            • #7
              Re: ICD fears

              WOW thumpy!! Your fear is completely understandable. I can't even imagine being shocked 6 times. Once was enough for me. I am so sorry that you had to endure that. Yes, of course it's great to know that the implant did its job. People keep telling me that as well. And while they're right, the reality of it all can be a bit much to handle sometimes. Being alone with ones thoughts is a very isolating thing. Unavoidable, but isolating. You definitely need an outlet, however you can find one.

              I am so glad that you're here and you're talking about it.
              Stephanie

              Diagnosed HOCM 1/05 -age 28
              Septal Myectomy 3/05 -Cleveland Clinic
              ICD Implant 4/05 -St. Luke's Bethlehem, Pa
              2nd ICD Implant 9/10 -St. Luke's

              Comment

              • #8
                Re: ICD fears

                Hi Thumpy,

                Yes, that is a very traumatic experience. I can completely understand your fear. I would be fearful too.

                Here in Phoenix, it's really hot, and we need to eat tropical fruits that contain a lot of potassium. I know that I have a ton of bumps and thumps during the summer months.

                I have PTSD, diagnosed by a few psychologists. Not only because of my heart and the problems I had, but also because of other health crisis (like the 2 times I almost bled to death and the other time I bled internally after a surgery - blood transfusions, I could go on and on). Whenever I see an Ambulance, I have to tell myself, it's not coming for me.
                Prayer gets me through.

                I want you to know, you are not alone.
                Lots of hugs.
                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

                • #9
                  Re: ICD fears

                  First off, I want to thank everyone for their support. You guys are great!
                  I will be getting therapy and I'm also taking anti-anxiety meds. As I grow older, it feels like I'm less resilient than I used to be and recovery takes longer. It will take time.
                  Again, thanks everyone!

                  Comment

                  • #10
                    Re: ICD fears

                    Thumpy - Not to sound like a On-Star commercial but, Please know we're here when you need us.
                    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

                    • #11
                      Re: ICD fears

                      Hi Thumpy,

                      I know you posted a month ago but I could not resist a reply. I am 27 years old and had my ICD for 3 month when I was shocked 7 times in a row. After an emergency room visit they told me my heart rate reached the ICD limit of 185 bpm. I now know not to get my heart rate up tha high while excercising. As you well know this was not a pleasent experience. I have been dealing with the best way I know how. However now that I know what to expect I dread ever getting another shock

                      Adam

                      Comment

                      • #12
                        Re: ICD fears

                        I should NOT be reading these a week after getting my ICD. YIKES!!!!!! What in heavens name am I to do with this information? I can't IMAGINE it going off ONCE, let alone 6 or 21 TIMES!!! Isn't there ANY way to prevent this from happening? I hate that I have this thing dug into my chest and I feel so badly for all you people. I hope to God that I never have to post about being shocked. How horrible. It seems like the very thing that could save us, in some people, is too crippling to endure sometimes! I'm afraid to start my exercising again because I just want to keep my heart rate at a steady 50.
                        ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
                        *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
                        *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
                        *Gradient 100-185 when provoked.
                        *Currently being treated with Atenolol, 50 mg. per day.
                        *Three kids: 19, 13 and 11, all presently clear of HCM.
                        *Patient of Dr. Sharlene Day, U of M.
                        *ICD - August, 2010

                        Comment

                        • #13
                          Re: ICD fears

                          I have had a device for 7 years and have never had it go off. Eventually you will stop worrying about it.
                          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

                          • #14
                            Re: ICD fears

                            Lord! THIS is the kind of stuff I need to be reading!!!! Do you know what your paremeters are? Do you exercise regularly? Do you watch your heart rate? Thanks for this. I really needed it! I'd like to think that it's NOT normal for it to go off but almost everyone on here has had an experience where it HAS gone off. Yuck!
                            ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++++++
                            *Adopted but know that birth Father died at 37 of what we now believe to be HCM.
                            *Diagnosed with HOCM in 11/07. I also have the abnormal papillary muscle.
                            *Gradient 100-185 when provoked.
                            *Currently being treated with Atenolol, 50 mg. per day.
                            *Three kids: 19, 13 and 11, all presently clear of HCM.
                            *Patient of Dr. Sharlene Day, U of M.
                            *ICD - August, 2010

                            Comment

                            • #15
                              Re: ICD fears

                              Rainey,
                              When they were setting my device the day after surgery, I specifically told the doctor that I worked out regularly and that my heartrate often goes into the 180's when I work out vigorously. He then set the device to start pacing me at 200 and to shock me at 220, so that I shouldn't have a problem with it shocking me when I am working out.

                              Again, eventually you will not even think about having this in you, I truly think so.

                              Kaye

                              Comment

                              Previous 1 2 template Next
                              Working...
                              X