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LYNZIE im a very bubbly down to earth person Find out more about LYNZIE
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  • feeling scared

    hello everyone,
    this is my first time on one of these sights.....so i dont really know what to say. To make a long story short my name is Lindsay and im 22 years old. I was diagnosed with HCM almost 2 Christmas' ago. I was told by my doctor and cardiologist i would probably need a defibrilator some where down the road, much to my surprise I received it months later. About a week ago it went off for the first time while i was boarding a plane to go home from Prince George.
    Boy was i scared and i seem to be getting more and more scared as the days go on. I have bad anxiety about this whole thing. I would just like to get to talk to people in the same boat as me, hopefully talking to ppl who know how i feel will make me feel better Does anyone feel as lost as me??
    Thanks for listening.
    ~Lindsay~
    Last edited by LYNZIE; 11-29-2006, 04:59 PM.

  • #2
    Re: feeling scared

    Welcome to the HCMA,
    It is normal for you to feel as you are, an ICD going off is a big deal and takes some time to adjust to. Have you been to the doctor and had the event looked at? Do you know if was an appriopriate shock? If it was did the doctors make any changes to your medication? If it was an inappropriate shock do you know if they changed any setting in your device?

    Now here is a funny question, do you know the difference between and appropriate and inappropriate shock...dont worry if you dont we can help you figure that out.

    Hang in there we are all here to help you though this difficult time.

    Best wishes,
    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


    • #3
      Re: feeling scared

      Hi Lindsay.

      I can imagine having your device fire would put you on edge. Take some deep breaths and ask every question that comes into your mind. It seems like knowledge does indeed quell fear. It would be even better if knowledge would heal you, but knowing what is going on inside your body takes some of the mystery and fear away.

      Know that here at the HCMA you are not alone. We are all pulling for each other.

      Peace,

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

      Comment


      • #4
        Re: feeling scared

        Lindsay - Welcome. You are not alone. I can certainly understand how upsetting this whole thing must be for you. Try to find a time when you can call the HCMA office - they can help you with the info you need to help you feel more at ease. I know you will have many respond to your posting with a show of support. Best wishes - Linda

        Comment


        • #5
          Re: feeling scared

          hi lisa,
          thank you for taking the time to write back to me. it makes me feel so much better that im not alone.
          ya i went to my family doctor the day it happened and my cardiologist the next morning. while at the cardiologist he told me to take more meds, im on metoprolol, so he gave me 50 more Mg and tweeked the machine so it would'nt happen as easily next time. Apparently my heart was accelerating because i was jogging to get to my plane...at that point my heart was going 150 bpm, then i received a flutter which kicked it up to 240 bpm and that is obviously why it shocked me. Actually i have no clue about the difference between appropriate or inappropriate..haha.
          im actually pretty confused about everything. Has your device shocked you yet? do u know anyone that is has shocked?
          Sorry about all the questions...im just so anxious.
          Last edited by LYNZIE; 11-30-2006, 01:16 AM.

          Comment


          • #6
            Re: feeling scared

            thank you Linda for taking the time to write back to me. I just feel so alone right now.....and all i do is worry. I was just starting to get useto everything...then the defib decided to shock me, now i have more to think about. I feel like i just wanna be a normal 22 year old. Im so glad i can talk to ppl like you about these things.
            thank you
            ~lindsay~

            Comment


            • #7
              Re: feeling scared

              thank you Leon,
              I have so many questions boiling in my brain...i dont even know where to start. Maybe one would be.. how many ppl with this device have experianced the good old shock?? hehe

              Comment


              • #8
                Re: feeling scared

                Lynzie,
                Call me at the office 973-983-7429 - I have had a device since 1992, although my ICD has not fire appropriately or otherwise I do know much of what you are going through at this time. Also I think it is time to make sure you have a complete understanding of your heart and how you can best protect it - for that we have tons of information and ideas to share!

                Hang in there,
                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


                • #9
                  Re: feeling scared

                  Lindsay,

                  I had my first device at the age of 22 as well. I am now 26 while my AICD has not shocked me I have been shocked while awake at the hospital. It is not fun but as time goes on without a shock you will start to feel more comfortable with the device. If it was an appropriate shock then have comfort in knowing that it probably just saved your life.

                  Most times I don't even think about my AICD anymore unless I hit it or like day before yesterday got my new stereo speaker too close to it.

                  If you have questions keep asking them. You can PM me anytime you want I know what it is like being young and dealing with this.

                  Mary S.

                  Comment


                  • #10
                    Re: feeling scared

                    Hi Lindsay,

                    My name is Wendy, I'm 25 and just got my ICD about a month ago. Mine kicks in to pace me when my heart rate increases too fast to prevent skipping beats and needing a shock. I sometimes feel it pacing me and the first three weeks after surgery it was doing it more often than I thought it would. This worried me about using it too much and wearing down the battery. This was a cycle that was non-stop. I would worry which would make the ICD work which would worry me.
                    I went to a store to return something. I walked in at a brisk pace and got to the service desk line and stopped suddenly which upset my heart and made my ICD work. I had to gasp for air. It paced me for about 4 or 5 beats and was unpleasnt. I decide right then and there I don't want to live like this. I realized and remembered right then that I am the type to not deal with change very well. I was stressing myself out. I made myself try to be more calm and this last week I have not felt the ICD pace me. I know relaxing is easier said then done but it will help. I take baths and eat chocolate. I am little by little getting use to the device and starting to live life without thinking about it so much. All in all what I'm saying is that I am in your boat and I am glad to have seen your post and not feel alone too!!!

                    Much Love,

                    Wendy

                    Comment


                    • #11
                      Re: feeling scared

                      Wendy - It seems to me that you should go back to your doctor and have your setting adjusted. Your device should not affect you when you are going about your normal activities. My device is set only to give me a big shock if my HR hits 200 bpm, but otherwise, it just monitors me. It sounds like yours is set to pace you out of arrythmias too, but that the parameters are set too low. Please call your doctor and ask if your device can be reprogrammed. All they do is have the computer talk to your device through your chest and give the device different commands. It is painless, and will make your life alot less stressful.

                      I have had a device for 4 years, and it has never inhibited me in any way, but I know it is there if I need 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


                      • #12
                        Re: feeling scared

                        Well my device is very sensitive to change; ie: stress , bumpy roads, emotioal discord, etc. My EP has shut off sensor switches and it continued . It may well be your heart that is sensitive, not your devise; your device is just trying to stabilize the irritable behavior . You need to have this fathomed out if it is a persistant issue.

                        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


                        • #13
                          Re: feeling scared

                          Hi!

                          Both my son (9years old) and my husband (38) have an AICD.
                          I can only write from a mother and wife point of view.... but something that helped my family was to see the device as a "security angel" and like you - express the feelings and fears and share with others.
                          I know some people that use to give names to their device.
                          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


                          • #14
                            Re: feeling scared

                            hi wendy,
                            i was going to send u a personal message but i cant figure out how. haha.
                            thank you for writing back to me.....your little blog made me feel better and ive been thinking about it for days. We seem very much alike. when i read the part about you taking baths and eating chocolate i laughed because those are two of the things i worry about and to read that took a weight off my shoulders and i didnt feel so crazy. anyways i would like to talk to u more if thats ok, i like the fact that we are close in age. hope to hear from u soon. my email is [email protected] if u wanna talk.
                            Thanks
                            ~Lindsay~ =)

                            Comment


                            • #15
                              Re: feeling scared

                              Hey guys,
                              Just a quick note in passing – dark chocolate is much better for heart patients then milk chocolate. I don’t know why, I just know that it is, so if you need a chocolate fix, go for the dark stuff.
                              Burt

                              Comment

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