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[Guest guest]

My first ICD was similar as well, something was wrong with the leads and they stopped my pacing on the atrials and was just pacing the vents and it was just a shock macine. I had it for 5 years now i am on my second one. Regards TURKtoocan66 <Toocan66@...> wrote: HAD MY Defibulater replaced last june.Then I was schocked in August,Went back to hospital,thay said I was raidating and leads where touching.Replaced the device,but contiued to readiate. so thay disconected the paceing lead,now I

have a shock box.get checked on regular basis. __________________________________________________

[Guest guest]

Thanks Turk :I'm a bit of a fan of yours.I have been reading yor post for a few years,You only had some real good stuff to help people.through tough times.This is my first time for posting,kind fo new at it.Thanks .TURK <goturk1@...> wrote: My first ICD was similar as well, something was wrong with the leads and they stopped my pacing on the atrials and was just pacing the vents and it was just a shock macine. I had it for 5 years now i am on my second one. Regards TURKtoocan66

<Toocan66 > wrote: HAD MY Defibulater replaced last june.Then I was schocked in August,Went back to hospital,thay said I was raidating and leads where touching.Replaced the device,but contiued to readiate. so thay disconected the paceing lead,now I have a shock box.get checked on regular basis. __________________________________________________

[Guest guest]

Hi Toocan,

Just wanted to say welcome. Glad you decided to post. This group is so wonderful and everyone is so supportive....don't know how I would do it without them.

in CA

Thanks Turk :I'm a bit of a fan of yours.I have been reading yor post for a few years,You only had some real good stuff to help people.through tough times.This is my first time for posting,kind fo new at it.Thanks .

See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi! I have been "lurking" here for a few weeks but have not chimed in on this conversation before now.

I had my ICD implanted in early September after passing out one evening while traveling through Southern Michigan. I had gone outside of our trailer to make a cell phone call. It was dark and I didn't realize I was in the middle of a swarm of insects. I accidentally inhaled a few of them and went into a coughing fit for a short while. It was right after calming down from the coughing that I passed out for a few minutes. (This has never happened to me before.) So I was taken by ambulance to a nearby, fortunately excellent, hospital.

I have a history of cardiomyopathy and a rather low ejection fraction, along with a long-time hx of PVC's. I was only diagnosed about a year ago with this heart problem (other than the PVC's long ago in my mid-30's.). Since I had a syncope event, and given this history, they talked me into getting a Medtronics ICD put in.

Unfortunately, I had implanted one of the "recalled" leads, only a few weeks before the recall.

I just returned from my six-week checkup on my ICD back in Ann Arbor. Everything checked out just fine. They reprogrammed the alarms, tightening up the parameters for monitoring the electrical integrity of the leads, etc. I've had no pacing or other activity since implantation, and I feel great. I was kinda more tired than usual for a few weeks after the implant, but that seems to have abated and I'm back to "normal" for someone just turning 65. Of course, I wish the lead was not problematic, but the risk seems quite low, and I'm just accepting that this is what is, so take note, get good information, and go on with life.

I travel full-time in a 5th wheel trailer with my partner, so getting care since my diagnosis a year ago has been a little tricky. I'm not willing to "stay put" and tether myself to a particular cardiology center, so I get people to treat me "long distance," which is quite possible in the age of faxes, Internet, etc.

We are currently back in Seattle, our home base, but I decided to cash in some frequent flyer miles and go back to my original implant team in Ann Arbor for this follow-up. I'm glad I did, given the recalled lead issue which came up after making these plans.

I had read here and in other places about those few occasions where "inappropriate" shocks occur, repeatedly in a very short time, presumably due to lead problems or other technical malfunction. Of course, I don't want this to happen to me. But there's a small chance it might.

I also have come to understand that a way to shut this off is with a particular kind of magnet. Since I travel a lot, often in remote areas, and may not be anywhere near skilled care at times, having a magnet handy seems like a good idea. I asked the physician from Medtronics who participated in the "zap chat" the other day about this, and he said to ask my doctor about it. So at my recent checkup, I discussed this with the nurse doing the technical checking, and after consulting with her boss, they decided this was a good idea, and I was given a magnet for this purpose.

Of course, the responsibility that goes with this is having myself and my partner understand that the ICD is SUPPPOSED to go off under certain circumstances, and the magnet should only be used on my initiative if I'm receiving repeated shocks, not going into an arrest or passing out, otherwise feeling well, etc. and can't get to proper care quickly.

I would expect that many physicians would be reluctant to hand out magnets to ICD patients. It would require a lot of individual assessment of a patient's physical as well as emotional status. So, while I want to share about this to help alleviate some anxieties that have come from the recall issue, I don't want to create a "run" on magnets, either! It may or may not be appropriate for you, so if you ask about it, trust your medical care team on this one, as well as all the other matters you deal with.

Meanwhile, I'd like to recommend a couple of books I've just read regarding heart failure and ICD's.

First, I came across this book at a Seattle bookstore last week, and I read it on the plane going back to Ann Arbor. I highly recommend it. It is comprehensive, optimistic, and very helpful.

Success with Heart Failure: Help and Hope for Those with Congestive Heart Failure by Marc Silver (Paperback - 2002)

Check out the comments, etc. at the Amazon link posted below:http://www.amazon.com/Success-Heart-Failure-Those-Congestive/dp/0738210722/ref=pd_bbs_2/102-5306520-6607301?ie=UTF8 & s=books & qid=1193939728 & sr=8-2

Second, I was given a copy of this book at my ICD review session, and I read it on the plane coming back to Seattle. It is a compelling and well-written story of a young man dealing with serious heart problems all of his life and the fears he faced and the maturity he gained with a very healthy approach to his unhealthy heart.

One Beat at a Time - Living with Sudden Cardiac Death (Paperback)by D. Noble

Again, the Amazon link for information and reader comments:

http://www.amazon.com/One-Beat-Time-Living-Cardiac/dp/0976943603/ref=sr_1_5/102-5306520-6607301?ie=UTF8 & s=books & qid=1193940306 & sr=1-5

Hope all this helps . . .

Bill See what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Thanks for the compliment, i am not sure if i am deserving but i apreciate it. Just remember one thing , don't be shy in the group, no matter how minute it may be, at least one of us will learn something from it. Kind regards TURK PS: OK EVERYONE, TIME TO CHECK IN, ESPECIALLY THE SENIOR MEMBER OF THE GROUP. LET US KNOW WE ARE ALL DOING OK.!............ Brophy <Toocan66@...> wrote: Thanks Turk :I'm a bit of a fan of yours.I have been reading yor post for a

few years,You only had some real good stuff to help people.through tough times.This is my first time for posting,kind fo new at it.Thanks .TURK <goturk1 > wrote: My first ICD was similar as well, something was wrong with the leads and they stopped my pacing on the atrials and was just pacing the vents and it was just a shock macine. I had it for 5 years now i am on my second one. Regards TURKtoocan66 <Toocan66 > wrote: HAD MY Defibulater replaced last june.Then I was schocked in August,Went back to hospital,thay said I was raidating and leads where touching.Replaced the device,but contiued to readiate. so thay disconected the paceing lead,now I have a

shock box.get checked on regular basis. __________________________________________________

[Guest guest]

I’m ok. I think the whole lead thing

has reactivated some PTSD for me.. but otherwise ok. Been having some PVCs

lately but nothing that is even remotely VT. My latest thing is I’m just

angry at Medtronic because someone should have suspected the lead was my

problem if they knew it had the potential to cause problems.

From:

[mailto: ] On Behalf Of TURK

Sent: Thursday, November 01, 2007

11:58 AM

Subject: Re: leads

Thanks for the compliment, i am not sure if i am deserving but i

apreciate it. Just remember one thing , don't be shy in the group, no

matter how minute it may be, at least one of us will learn something from it.

Kind regards

TURK

PS: OK EVERYONE, TIME TO CHECK IN, ESPECIALLY THE SENIOR MEMBER OF THE

GROUP. LET US KNOW WE ARE ALL DOING OK.!............

Brophy

<Toocan66 > wrote:

Thanks Turk :I'm a bit of a fan of yours.I have been reading yor post

for a few years,You only had some real good stuff to help people.through tough

times.This is my first time for posting,kind fo new at it.Thanks .

TURK <goturk1 >

wrote:

My first ICD was similar as well, something was wrong with the leads

and they stopped my pacing on the atrials and was just pacing the vents and it

was just a shock macine. I had it for 5 years now i am on my second one.

Regards

TURK

toocan66

<Toocan66 > wrote:

HAD MY Defibulater

replaced last june.Then I was schocked in

August,Went back to hospital,thay said I was raidating and leads where

touching.Replaced the device,but contiued to readiate. so thay

disconected the paceing lead,now I have a shock box.get checked on

regular basis.

__________________________________________________

[Guest guest]

One of the problem with a spinal cord Stim is with the leads after

time the wires are tied in with your body mucles and to remove them

they tear open new wounds scar tissue then happens and that will

then cause pain. so the more times leads are changed the more scar

come. depending on each person it might cause pain might not.

everyone differnt. mike group owner