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What Life Like With a ICD?

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  • What Life Like With a ICD?

    [What Life Like With a ICD?]

    Author: Scott (---.75.beav-pool.powercom.net)

    Date: 12-05-02 19:11

    I'm a 36 year old male that was diagnosed with HCM 18 years ago. Since diagnosed my only restriction was no heavy lifting. I been monitored at least every other year and have been going about life. Four years ago I was put on atenolol for light headedness and my dosage has actually been decrease since moving from an altitude of 4800ft to 200ft. This summer while wearing a holter monitor it recorded some abnormal rhythms and my doctor is recommending a ICD. I consulted two other doctors and they recommend the ICD as well. Hence the subject matter. What is it like to live with a ICD? I've receive information from my doctors however, I hoping someone who actually has one can enlighten me.

    Thanks you in advance for your time.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: michelle (---.proxy.aol.com)

    Date: 12-06-02 01:18

    My life really hasn,t changed much since i got my ICD in August 2001. It was about a month recovery before I could lift my arm and sleeping on my stomach.

    I have become more aware of not getting upset like a use to ( I stop and think before I say anything that might get me upset.) I had no time to think about the ICD mine was put in as a emergency. I have no regrets my scar is minimal. Good luck in your decision.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Sarah Collard (---.in-addr.btopenworld.com)

    Date: 12-06-02 03:00

    Dear Scott,

    Have an ICD! My husband did not realise he had HCMA and aged 43 dropped down dead with no warning last year. We have since found out it was HCMA and his sons are now having regular tests. If a doctor thinks an ICD may be appropriate go with it as for all the inconvenience it may well save your life.

    Good Luck

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Elizabeth (---.fuse.net)

    Date: 12-06-02 03:51

    Dear Scott,

    I had my ICD installed September 20th of this year. I am a violinist, so I use my arms for hours everyday and am quite strong in the upper body. Once I got over the mental apprehension of needing the device, I stopped thinking about it and I often forget it's there. If your specialist thinks you need the device, don't hesitate. It really doesn't get in the way of any normal activity, but it's there if your life depends on it!

    Good Luck,

    Elizabeth

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Kay (204.184.29.---)

    Date: 12-06-02 04:23

    Scott, I am 31 years old. I had an ICD implanted in March of this year. Besides the restrictions of not being able to lift my arm for a few weeks, nothing has changed. The procedure was a breeze. Nothing to it. My sister had one implanted the day before me, my brother and his daughter 15 had one implanted two weeks ago. His ten year old son passed away on the playground at school last month. If he would of had one, it would have saved his life. Sometime in the very near future they are implanting one in my three year old. My niece who had one implanted was rolling around on the floor with her dog the day after her surgery. For an adult the procedure is very minor.

    Please have the ICD implanted, it could save your life.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Heather (65.247.157.---)

    Date: 12-06-02 06:01

    Scott,

    I just had a pacer/ICD implanted almost 4 wks. ago. The surgery wasn't bad at all. I was pretty sore for a few days and then it was more of a tightness. I'm not supposed to lift my arm over my shoulder area until after 30 days, which will be Dec. 11. I've become so cautious about it, I bet it will take a lot for me to do it even then. I am somewhat nervous about it being there, I guess the fear of the shock, but am more relieved knowing it's there if I need it and I seem to feel a lot better since I have it. I think for me that's more the pacing mechanism, which I don't think from your you'll need, just the ICD. I really don't think about it much now and like someone else mentioned I am careful now not to get upset and say things that might get me upset. Anyway, I think if your drs. say you need it, you should go for it. It's not a big deal. Email me if you have any specific questions since I have done this recently!!

    Heather-30, HCM

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: faith (---.214.85.7.Dial1.Boston1.Level3.net)

    Date: 12-06-02 07:27

    I, too, had my ICD put in on an emergency (age 60). If all your doctors say you should have one, you should. The procedure is easy, the recovery quick. Unfortunately, about 6 months after I had my implant, the ICD fired six times in a row, full strength. I was then given an AV node ablation because the two chambers of the heart weren't communicating properly, which caused my ICD to misread the signals. Now, obviously, I'm completely dependent on my pacemaker. This dependence has been terrifically hard to adjust to, but I'm better now, a year later. The first few months after the firing, I was terrified that the ICD would fire again. Post traumatic stress syndrome, sort of. As the days have gone by, I've regained my confidence. Through it all, I am awfully glad to have the ICD and strongly urge you to go ahead.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Donna (---.palmer.mtaonline.net)

    Date: 12-06-02 07:36

    Hi, Scott,

    My name is Donna. I found out this year that I had HCM. The hard part was finding it out through my brothers' death. I was also told I needed an ICD. I only had to think about it for a day. I just had to think of my sister-in-law and my brother's little boy that will have to grow up with out a daddy. I had my ICD put in 1 week after being told that I needed one. I have not been shocked yet, and hope I will not get one. But it is good to know if I need it, it is ready. The down time after they put it in was about 3 weeks. Just make sure that you have a few extra pillows. I needed to sleep propped up for a bit. Most of the time I don't even think of it. I even picked out a outfit, for a dinner party that came off the shoulders. I thought if my small scar buged them they did not have to look.

    Please get the ICD and let your family have you for a lot longer. Have a great Christmas and New Year.

    Donna

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Greg (208.187.247.---)

    Date: 12-06-02 07:50

    Hey Scott,

    I had my ICD put in two years ago - I went to see a cardiologist who told me I was at risk for sudden death and was willing to clear his schedule as soon as I said the word - The next a.m. it was implanted - prior to that I was running 30 -35 miles per week playing full back in a mens soccer league and physique wise looking pretty darn good if I do say so : )

    Frankly it bugs me that I wake up each morning with that scar there to remind me that I have this disease - I've been asyptomatic and am not currently taking any medication -

    Mines implanted in my chest over my left pec - I can see it through my shirt - my wife says no one else would ever notice - it took me a long time to take my shirt off in our private pool and have only recently taken my shirt off in public - there's a slight bulge about the size of a pager with a scar approximately 3 inches long - I'm obviously a bit vain, ok maybe a ton : )

    I'm glad I've got the thing but there is some baggage that comes with it . . .at least for me - so long story short you've got to do it but know that it's not all happiness and light

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-06-02 08:46

    Dear Scott,

    They can implant under the arm.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Heather (65.247.157.---)

    Date: 12-06-02 11:04

    I wish my drs. would've given me the option of implanting under the arm. No one even mentioned it......I honestly hate my scar and it does stick out a big......Mine is about 2" under my collarbone and I have about a 2" scar......Oh well, too late now.......

    Heather

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 12-06-02 11:19

    H

    It isn't done very often. I'm sorry you didn't know about it before hand. Well, yours is new, maybe it will go down some still?

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Amy N. (---.tnt3.seymour.in.da.uu.net)

    Date: 12-06-02 20:13

    Heather,

    When I had surgery on my hand about 7 years ago, they gave me some type of chushy/jelly type padding that I put over the scar area. My scar was red and raised up. The padding helped flatten the scar and over the years it's turned white. I don't know what that stuff is called, but it resembles the stuff that you can buy over the counter called second skin or something like that. I really don't notice the scars anymore and neither does anyone else. I once had a doctor look at my hand and asked how I got the scar. He was a bit shocked when I told him I lost a finger in an accident. I'm sure he might have felt silly, but it was the best compliment I ever got. A doctor not even noticing I only had four fingers. I was self consious to begin with, but that went away and I don't really think about it now.

    Amy N.

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 12-10-02 11:06

    Life with an ICD...

    I can wrap it up like this....

    Over the weekend I was getting ready for x-mas I stood up from wrapping gifts, I got very dizzy and thought to myself I am in big trouble I am alone in the house!

    Then within a matter of 1 second I thought..no I am ok my ICD will help me and I smiled. Thankfully the dizziness past and I felt better rather soon after. No panic, no fear...just my little friend that is with me 24/7 let me know that all was well.

    Funny thing... I never thought I would smile a moment before the thing went off I thought I would be filled with fear...close call but all was well.

    I trust my ICD more then my own heart. I do more with my ICD then I did prior to implant because I feel safer.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: What Life Like With a ICD?]

    Author: Janis (---.proxy.aol.com)

    Date: 12-11-02 10:19

    Hey Scott,

    My ICD was implanted almost six weeks ago. While out christmas shopping

    this week I ran into an electronics store. On my way out the alarm went off and I

    got a little annoyed that the sales clerk did not de-activate my purchase. Once

    this was done and I was on my way back out the alarm went off again. Talk about

    being P.O. Then it hit me !!! It wasn,t my items it was my ICD. LOL!!!!! After showing them my card we all had a good laugh.. You see in this short time I am already adjusted to it if I can,t remember it,s there. Good Luck!!!!

    Janis
    NOTE: This is a post from the previous forum message board.
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