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 What's Life Like With a ICD? Part 2

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  •  What's Life Like With a ICD? Part 2

    [ What's Life Like With a ICD? Part 2]

    Author: Scott (---.114.beav-pool.powercom.net)

    Date: 12-09-02 18:16

    First of all thank you all for the feed back on my first question. A couple things concern me with having a ICD.

    I understand they are adjustable to some extent and I just don't what the device going off unless it is really needed. So if I am exercising, stressed or by a magnetic field are these reasons for this device to activate. Another words, do these devices go off inadvertently?

    How often do you need to have them checked? Is it now done over the phone?

    I've been told I can't drive by one doctor for two weeks and another four weeks? What determines the time frame?

    How do they test the device to make sure it is working properly?

    Thanks again

    Scott

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-09-02 21:26

    Scott, I have had my icd sence April of this year. It has not fired on me yet. I ride in a friends car that has HAM radio equitment all over it and have not had a problem. I am not paced at this time. I don't know if that would be a problem or not. I have my ICD checked every 3 months. We do not do it by phone yet. I live in Alaska. I have been told that they can do it that way in the lower 48 states.

    They test it for the first time when you are in the O.R. I was out and did not know that it was tested. I do some light exercising in the A.M.

    I was not able to drive for 3 weeks. It was a hard, but my kids got more driving time. I was back to work in 4 weeks. I could have gone back sooner if my job did not have so much lifting and using my arm so much. I hear Dick Channey was back to work in 3 days. He only has to pick up a pen.(ha ha)

    I hope this helps a bit. Keep your spirits up and take care for yourself.

    Donna

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    [Re:  What's Life Like With a ICD? Part 2]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 12-10-02 01:21

    Dear Scott,

    Misfires do occur, but everyone on your team will do everything they can to make sure it doesn't happen. You will have to avoid magnets and being near big amps, etc. Visit zaplife.org for more info on ICDs. and also medtronic.com and guidant.com.

    Going into the office is usually only every 3 to 4 months from what I've heard. Weigh that against saving your life and it becomes worth it.

    S

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    [Re:  What's Life Like With a ICD? Part 2]

    Author: Dolly (Andrew's mom) (---.pressenter.com)

    Date: 12-10-02 04:14

    Hi Scott,

    Though I don't have an ICD myself, our 13 year old son does. He has had his for 3 1/2 years now and it has never misfired. Though this is always a possibility, the electrophysiologists are very knowledgable in their field and are very careful to set them so the ICD "knows" each persons threshold numbers. Meaning your heart rate can increase to it's "normal increase levels" due to stress, excersise, anxiety, etc. and the ICD is able to detect that, through settings, and not fire. It is set to fire when your heart rate goes beyond your normal increase levels. (or below the preferred lowest level)

    Andrew was seen at 3 months the first time following his implant, but after that is seen every 6 months at the clinic. At each appoinment he has his ICD interrogated to check for any therapies and also they check the settings each time. Andrew's ICD also has a built in "self test" and alarm. Each day at 9:45 the ICD does a self test and if it finds anything out of order or not responding, the built in alarm will go off to notify us.

    Basically, the ICD has not slowed Andrew down at all or caused any major life changes for him! He carries on day to day as he did before! The driving part we will have to deal with in 3 years! (Heaven help me!)

    Hope this eases your mind a bit.

    Dolly

    mom to 13 year old Andrew

    Diagnosed in '95

    Myectomy in '96

    ICD implant in'99

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Matt (---.disney.com)

    Date: 12-10-02 04:59

    Scott,

    I assume that the ICD going off inadvertently depends a lot on the type of ICD implanted. For example, because of my chronic A-Fib/Flutter they decided to put in a single-lead unit. Because it doesn't get all readings, it will interpret Atrial Flutter as a problem and shock me if/when my rate hits the threshold (180 BPM). I learned this the hard way by being shocked three times in a row until I could finally calm myself down, which is not an easy task when continuously getting kicked in the chest. I suggest you ask your doctor what the parameters would be for your unit and what the chances are for "false" readings. I assume most 2-lead units will look for V-Fib and V-Tac in particular and know when they are occurring for real.

    About the magnetic fields and such, these will not make the unit shock you. They may however, render it useless (turn it off) so the problem here lies in the fact that if you need it at that time, it won't help. When you get your data downloaded from the unit, they actually place a magnet over it which turns it off while it is downloading.

    I'd say that the 2-4 weeks is the recovery period and everyone is different. I was driving within a week, but not legally because in Florida you can't drive for 6 months after the implant!

    Hope this helps. Matt

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Greg (208.187.247.---)

    Date: 12-10-02 06:38

    Hey Scott the surgery and recovery was a breeze for me - I was up and getting around fine within 24 hrs - it was tender and it might of taken 10 days or so for it to heal up but basically the surgery has got to be one of the easier ones out there.

    I know that might sound hard to believe but at least for me it was fine.

    They have me in every 4 months for a battery check and a quick read on my heart rhythms - they essentially put an antenna like device up to the implant and it downloads through the skin the latest and greatest adventures your heart has been taking. This takes 30 min or less.

    They do test the gadget while you're sedated - I have been very active since having mine implanted - Running 10k's, skiing the steep and deep stuff Lisa is telling me is a no no. I've yet to see an HCM specialist and have knocked off the running . . .for now.

    Mine has never misfired - I too was concerned and my cardio put me through a monitored stress test - they turn the toy off and checked to see what my top line was on my heart rhythm and then adjust my gadget so that it would not inadvertatnly go off during exercise.

    I travel alot for work - lot's of airports and security patting me down - that can be a bit annoying particularly when they tell me I'm too young to have an ICD.

    It's certainly a weird sensation when your hand or chin bumps it, it's an instant reminder that something foreign is in your body -

    my only advice would be to do a lot of one armed pushups on your non-implant side to even out your chest - that's an attempt at humor

    best wishes

    Greg

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-10-02 10:09

    My ICD's - -never a misfire - never a fire.

    checked every 3-4 months must be done in the hospital unlike pacers which can be done over the phone.

    1st ICD,,, broke ;-( a wire inside broke and it just was not working, they found this at a check up then... I spent the night and had a new one the next day.

    1st device out of work 4 days - 2nd out 5 days, but I do not lift anything.

    driving is different state to state, check with your dr. it is NOT a good idea to drive for at least 1 week to 10 days you have to heal and may not be able to respond well behind the wheel.

    Thats the short take on ICD's from me

    Lisa

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: faith (---.214.102.124.Dial1.Boston1.Level3.net)

    Date: 12-10-02 15:34

    I'm interested in the driving part or these posts. I was told at New England Medical Center that no one should ever drive with an ICD. This is the rule in the UK. When this was announced at our NEMC support group, we all laughed. At the very least, the doctor continued to explain, one should wait until 6 months after the ICD is implanted or, in the event of a firing, 6 months after the firing episode before driving. This is the protocol for people with seizures, which the doctors at New England say is the nearest analogous situation. The problem has nothing to do with the physical act of driving but rather with the probability of a lawsuit should you have an accident that could be traced to the ICD. These sorts of accidents can quite literally wipe you out financially. Am I off base here?

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Reenie Smith (---.snbrca.adelphia.net)

    Date: 12-10-02 15:45

    I don't know anything about the laws regarding whether or not (or when) a person should drive after an ICD. I do know that there are many people who have ICD's who have never been shocked. I think that's like saying if you have HCM you shouldn't drive. Or asthma or anything else that *can* cause problems. I know that some people black out before their ICD fires. But those people shouldn't be driving, ICD or not. If you are prone to blacking out, you shouldn't be behind the wheel. Anyone else have an opinion on this?

    Reenie

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Sue (---.howard01.md.comcast.net)

    Date: 12-10-02 17:01

    Re driving: Some people are given ICDs because they have been blacking out. They shouldn't drive for the six months after their last blackout---maybe. My main concern was that the seat belt hurt my implantation site so I was driving inadequately seat belted. I drove to work, as far as I can remember, the week after my implant. It's a short drive that I know well. I wouldn't drive for about two months on the freeway because I was concerned about the seat belt issue. Being a passenger wasn't a problem because the seat belt went over my right shoulder rather than my left---so my husband drove. After about four months, I didn't even think about the seat belt going over the site. In fact now, seldom think much about my ICD. Sue

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Scott (---.115.beav-pool.powercom.net)

    Date: 12-10-02 18:06

    Thank you all for the information. I think it is time to schedule the procedure. I'll be sure return the favor by efforting on this site.

    Scott

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-10-02 18:07

    Scott - we are happy to have you and i am happy to know you will soon be a memeber of the ICD team!

    Best wishes,

    Lisa

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Mary S. (---.net156.fl.sprint-hsd.net)

    Date: 12-10-02 18:29

    My experience with the ICD was not bad at all. I had my Implant on a Friday and was driving by Monday afternoon. I am one of those people that it kills me to depend on anyone so I just had to do it myself. I did end up wearing a sling for the first week or so when I was not driving. I am about six weeks post ICD and am feeling the best that I have felt in the past year! There are a couple of things that bother me though from the inside of my arm pit down to my elbow if you touch it it tingles all the way down. I figured that the ICD must be sitting on a nerve I asked the cardiologist this and he agreed. Last Friday I was playing a game of basketball with the firefighters and I caught an elbow to my ICD implant sight it hurt like the dickens I had to stop for a bit. It felt like it had been shoved under my arm it did swell a little. Is it always going to be painful if you catch a hit to that area?

    The only thing that has really changed for me is not being able to ride roller coasters! I work at WDW and rides are apart of my life. Unfortunatly I cannot get much information from the company on things that affect the ICD or not. the only thing I get is don't go near microwaves. Isn't that a bit outdated? Anyhow I am glad I got the device implanted so I can go on living my life and every so often do a pick up game of basketball without the fear of falling over dead.

    mary S.

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: terri (---.tribune.com)

    Date: 12-11-02 05:43

    Mary S.

    Why can't you ride rollercoasters? My daughter has an ICD and I don't believe we were warned about that.

    Terri

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: faith (---.30.177.235.Dial.Boston1.Level3.net)

    Date: 12-11-02 11:18

    I think because the machine that operates them has magnets (same as speakers, high-voltage lines, MRI equipment, remote control things, etc.).

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Lori (---.client.insightBB.com)

    Date: 12-11-02 12:05

    My doctors office contacted medtronic re: rollarcoster rides they give my daughter and I the OK. She did just fine at Kings Island. Had a great day. I have had a pacemaker for 7 yrs. and it was replaced last April with a new duel chamber and defibulator. It is much better than the old model. Not so sensitive. Doesn't life get better all the time????

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Chuck (159.121.96.---)

    Date: 12-11-02 12:19

    My favorite thing about my ICD is that my doctor says I can no longer mow the lawn!

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-11-02 15:06

    Chuck... how much did you pay him for that, dont worry we will not tell your wife

    Re roller coasters - - some may cause your heart rate to go too high and you may risk your device firing - other roller coasters are now run on high power magnets this is a real concern - -an old style wooden or steel coaster does not have the same issues as the new style.

    I did go on a small coaster this summer at the NJ boardwalk...I did fine ...BUT I would not try the really big coasters as I know my rate would go way up and the magnets are a concern.

    Lisa

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Chuck (159.121.96.---)

    Date: 12-11-02 15:27

    Lisa

    Well she wouldn't let me mow the lawn if I paid her.

    The new trend in all rail products seems to be of the MAG-LEV variety. But I think that passenger trains are better schielded than costers. I know that we will all have to ride the older costers if we want a thrill.

    Chuck

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: Mary Sharp (---.net252.fl.sprint-hsd.net)

    Date: 12-12-02 04:24

    Yeah the coaster I was thinking of specifically was Rockin' Rollercoaster. It is propelled by high power Magnets. I have done other coasters and I was fine. But R N R was my absolute favorite ride.

    Mary S.

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-12-02 04:44

    I will be having a ICD inplanted in Feb sometime, I already have a pacemaker.Do you have to have any kind of testing done other than lab work and etc. before they do this.

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-12-02 06:43

    Faith - I have a call in to NEMC to review your post on driving -- I will post more when I hear from them - -I just did not want you to think I ignored you.

    Lisa

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

    [Re:  What's Life Like With a ICD? Part 2]

    Author: faith (---.214.70.136.Dial1.Boston1.Level3.net)

    Date: 12-12-02 07:36

    The doctor who ran the session on driving in our support group was Dr. Hamoud.

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

    [Re:  What's Life Like With a ICD? Part 2]

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

    Date: 12-12-02 09:32

    Thanks I will pass that on.

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

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