ICD removal

[Guest guest]

>

> Has anyone ever contemplated this? I know my story is very different

than

> the average (www.vtpatients.org/laura.html if you want to read it)

but it's

> something I'm contemplating. My EP said he could not see a scenario

where he

> would remove it but my cardiologist said she might support it if I

thought

> very carefully about it. I definitely would wait until the battery was

> drained and possibly not replace it. I know it's extremely uncommon

but is

> there anyone out there who has experience with this?

>

>

>

>

Dear ,

You are not alone. Please do not think that you are. Your story has

touched my heart this morning. There are many individuals who have

recieved faulty I.C.D.s and leads. That have caused them allot of pain

and suffering. I will be keeping you in my prayers that you shall get

resolve. May God Bless you.

[Guest guest]

Hopefully someday I can feel that way.. I keep

trying to convince myself that I should feel lucky but I can’t make

myself.

From: [mailto: ] On Behalf Of Guin Van Dyke

Sent: Friday, February 15, 2008

1:48 AM

Subject: Re: ICD removal

I personally can't imagine not having my ICD. I have

had an ICD for 9 years, it has never saved my life, meaning it has never

shocked me. BUT I cannot imagine having it removed since it is there to

protect me and save my life. To keep me alive for my family. I have

never had any problems with it and it has been very non-eventful except for the

replacements. I am on my third - the first being recalled after 5

mos. I guess if the device were impairing my life I might feel

differently, but if we are talking life or death, I would keep the

device. I want to grow old and be a grandmother one day.

Hope this helps as one perspective.

~guin

ICD

removal

Has anyone

ever contemplated this? I know my story is very different than the average (www.vtpatients.org/laura.html

if you want to read it) but it’s something I’m contemplating. My EP

said he could not see a scenario where he would remove it but my cardiologist

said she might support it if I thought very carefully about it. I definitely

would wait until the battery was drained and possibly not replace it. I know

it’s extremely uncommon but is there anyone out there who has experience

with this?

__________ NOD32 2878 (20080215) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

[Guest guest]

I have only had my ICD since the end of august but I would never

contemplating getting rid of it. I fought getting it like the dickens

but I faint about once a week and worry about sudden death. I have V

tach. So far my device has never gone off but it gives me a margin of

safety. Why would you want to remove it? Mine is irritating. It

itches like crazy (I think I am allergic to it!!). It has been almost

6 months and if you try to scratch the itching it hurts really bad. I

have never had a wound take so long to heal. Any one else's itch like

crazy? Kathy

>

> Has anyone ever contemplated this? I know my story is very

different than the average (www.vtpatients.org/laura.html if you want

to read it) but it's something I'm contemplating. My EP said he could

not see a scenario where he would remove it but my cardiologist said

she might support it if I thought very carefully about it. I definitely

would wait until the battery was drained and possibly not replace it. I

know it's extremely uncommon but is there anyone out there who has

experience with this?

>

>

>

>

[Guest guest]

I got it initially because my EF had

dropped to 15 after my second pregnancy. It is now 30-35 which is where it has

been for most of the last 14 years. I have not had one episode of VT since the

defective lead was removed last July. I have class I heart failure and honestly

don’t think I need it. I think it’s mostly that I resent that I

have it given what the last one did to me. It’s been 7 months since all

this happened to me and I’m still having a hard time getting past it. I’m

preoccupied with my ICD and resent it and I don’t know how to stop. I

have a pulsation there and some pain under my arm near the ICD so those are

more constant reminders in addition to my horribly healed scar that I have to

look at every day.

I know I’m not the average but all

my ICD has done for me is ruin my life. I need to get over this but I don’t

know how. Hopefully time will help.

From:

[mailto: ] On Behalf Of

kathyn2

Sent: Friday, February 15, 2008

10:04 PM

Subject: Re: ICD removal

I have only had my ICD since the end of august but I

would never

contemplating getting rid of it. I fought getting it like the dickens

but I faint about once a week and worry about sudden death. I have V

tach. So far my device has never gone off but it gives me a margin of

safety. Why would you want to remove it? Mine is irritating. It

itches like crazy (I think I am allergic to it!!). It has been almost

6 months and if you try to scratch the itching it hurts really bad. I

have never had a wound take so long to heal. Any one else's itch like

crazy? Kathy

>

> Has anyone ever contemplated this? I know my story is very

different than the average (www.vtpatients.org/laura.html if you want

to read it) but it's something I'm contemplating. My EP said he could

not see a scenario where he would remove it but my cardiologist said

she might support it if I thought very carefully about it. I definitely

would wait until the battery was drained and possibly not replace it. I

know it's extremely uncommon but is there anyone out there who has

experience with this?

>

>

>

>

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This message was checked by NOD32 antivirus system.

http://www.eset.com

[Guest guest]

Hi Kathy:

I've had my ICD since August of 2006, so a little more than a year. I

was told that my scar would stop itching within a year, but it still

itches from time to time. I don't scratch, I gently rub the area to try

and alleviate the itching that does eventually to away. I also try to

remember to keep my skin more moisturized by applying lotion to the area

which also helps reduce itching. I realize how itching can drive one

crazy and have also wondered if I were allergic to my unit for the same

reason, but, that is a very small inconvenience to suffer for the

benefit of such a lifesaving possibility if you need it. As I said

previously, I've heard of 2 people similar in age to myself who suddenly

dropped dead of heart problems. One of which I knew who had heart

problems similar to myself (Cardiomyopathy). He and his wife bought a

Sheltie puppy from our last litter 7 years ago. He was dropped dead at

work one morning as he did not have the advantage offered to me several

years later with the implant of my ICD. Thinking about Robin, his

wonderful family, and his premature death, I never hesitated to get my

ICD, and thank every day since to be alive and able to work full time

and enjoy my life. I am so grateful for the opportunity that my

grandfather and his father never had, who both died within 2 years of

each other of heart problems. I may have inherited my heart problem,

but, with the advances of medicine and technology today, we have a much

better chance of survival than my ancestors did. So would I ever

consider having my ICD removed just because of a little itching? No

Way! God isn't done with me yet, and as long as he allows me the gift

of life, I will enjoy and make the most out of every day I have, and

continue to thank him for this wonderful little gadget that helps keep

me alive.

Sincerely,

Jody Champlin

kathyn2 wrote:

>

> I have only had my ICD since the end of august but I would never

> contemplating getting rid of it. I fought getting it like the dickens

> but I faint about once a week and worry about sudden death. I have V

> tach. So far my device has never gone off but it gives me a margin of

> safety. Why would you want to remove it? Mine is irritating. It

> itches like crazy (I think I am allergic to it!!). It has been almost

> 6 months and if you try to scratch the itching it hurts really bad. I

> have never had a wound take so long to heal. Any one else's itch like

> crazy? Kathy

>

> >

> > Has anyone ever contemplated this? I know my story is very

> different than the average (www.vtpatients.org/laura.html if you want

> to read it) but it's something I'm contemplating. My EP said he could

> not see a scenario where he would remove it but my cardiologist said

> she might support it if I thought very carefully about it. I definitely

> would wait until the battery was drained and possibly not replace it. I

> know it's extremely uncommon but is there anyone out there who has

> experience with this?

> >

> >

> >

> >

>

>

[Guest guest]

Hi ,

I know how you feel. One of my first reactions was get

this thing out of me!!!!!!I believe they found the

cause of my arrest but cannot chance taking it out as

I am still fairly young and would like to see my son

go off to high school then college.

I am so sorry because I know how traumatic it is when

the thought of the foreign object being in your body.

I went and had ablation surgery which failed and would

do it again to get this thing out. It is hard for

people to understand the way it feels when it goes of

alot or you have had alot of pain. I will be sending

good thoughts your way.

--- Baker <laurarn@...> wrote:

> I got it initially because my EF had dropped to 15

> after my second

> pregnancy. It is now 30-35 which is where it has

> been for most of the last

> 14 years. I have not had one episode of VT since the

> defective lead was

> removed last July. I have class I heart failure and

> honestly don't think I

> need it. I think it's mostly that I resent that I

> have it given what the

> last one did to me. It's been 7 months since all

> this happened to me and I'm

> still having a hard time getting past it. I'm

> preoccupied with my ICD and

> resent it and I don't know how to stop. I have a

> pulsation there and some

> pain under my arm near the ICD so those are more

> constant reminders in

> addition to my horribly healed scar that I have to

> look at every day.

>

>

>

> I know I'm not the average but all my ICD has done

> for me is ruin my life. I

> need to get over this but I don't know how.

> Hopefully time will help.

>

>

>

>

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of

> kathyn2

> Sent: Friday, February 15, 2008 10:04 PM

>

> Subject: Re: ICD removal

>

>

>

> I have only had my ICD since the end of august but I

> would never

> contemplating getting rid of it. I fought getting it

> like the dickens

> but I faint about once a week and worry about sudden

> death. I have V

> tach. So far my device has never gone off but it

> gives me a margin of

> safety. Why would you want to remove it? Mine is

> irritating. It

> itches like crazy (I think I am allergic to it!!).

> It has been almost

> 6 months and if you try to scratch the itching it

> hurts really bad. I

> have never had a wound take so long to heal. Any one

> else's itch like

> crazy? Kathy

>

> >

> > Has anyone ever contemplated this? I know my story

> is very

> different than the average

> (www.vtpatients.org/laura.html if you want

> to read it) but it's something I'm contemplating. My

> EP said he could

> not see a scenario where he would remove it but my

> cardiologist said

> she might support it if I thought very carefully

> about it. I definitely

> would wait until the battery was drained and

> possibly not replace it. I

> know it's extremely uncommon but is there anyone out

> there who has

> experience with this?

> >

> >

> >

> >

>

>

>

> __________ NOD32 2880 (20080215) Information

> __________

>

> This message was checked by NOD32 antivirus system.

> http://www.eset.com

>

>

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[Guest guest]

:

Everyone has a few days that they will never forget. May 29, 1998 is a day I will never remember. From the reports of others, I was working outdoors and collapsed suddenly. The Local Animal Control lady was driving by, stopped and gave me CPR. The hospital was only about 200 yards away and an smbulance was there at the ready and dispatched immediately.

I woke up three days later in the local hospital. I had suffered a Sudden Cardiac Death from ventrical fibrillation. By all accounts and statistics I have read, I should now be in the nearby veterans' cemetary making the others there turn over in their graves with my bad puns. To this day, when I see the hospital staff who treated me, they all call me The Miracle Man. (My wife says that's because if I ever do any housework it will be a miracle.)

As soon as I was well enough, I had an ICD implanted. the implant went smoothly and there were no postimplant problems at all, something not everyone can say. Since that implant I've had two replacements, also without any problems. I do suffer from congestive heart failure (to go along with my confused brain failure) and my hear irregularities are part of everyday life.

Since getting my defibrillator I have had several other instances of sudden cardiac death, and each time I got up off the floor and continued what I was doing and saw my cardio sometime in the next two or three days. Without the ICD I would definitely be in that vets' cemetary. Had I had the ICD when I collapsed on the street, I would have done the same thing. I would have picked myself up and went about dioing whateer it was that I was doing at the time. The ICD is the single most successful machine in preventing sudden death from health reasons. It is interesting to note that recent statistics compared pre ICD survival rates of approximately 5% with post ICD survival rates of approcimately 95%. I have had a few firings, once when I was with friends at a restuarant and I found myself looking at the ceiling. the ICD did everything

it was supposed to do, and I finished my meal (after assuring the EMT's that came that my normal vitals were what was to be expected from someone with an ICD that had just zapped me.

If you have children or grandchildren, you should not even joke about having your ICD removed. If you do, you will miss all the fun of hiphop music, their dating people with tattos and body piercings you'd trather not know about, and the abject fear of relizing that these kids are going to have cars and credit cards to go with their too-soon adult bodies that they also do not know how to protect. Please . . . forget about removing your ICD.

Instead go to a cardio that is sympathetic to your complaints. Cardologists are like lingerie. If they do not make you feel good, improve your social life and get you to do things you thought you'd never do again, then get a new cardiologist. Or be happy wearing corduroy nighties and wondering why you have cobwebbs in THOSE places.

This group is perhaps the single best place you will find to talk about the problems of ICD's, cardiologists, hospitals, medications and flatulence in crowded elevators. (Okay, the flatulece line wasn't true. I was just checking to see f you were paying attention.) Some of the people here have had so many cardiac incidents that they are textbooks unto themselves. At least one young lady has been advising us old farts (Back to flatulence again.) since she was sixteen on finding the quality of life we want while dealing with an ICD that does not make life comfortable and without disruption.

do not remove your ICD, and do not leave this group. Each of us has something to throw into the pot top help someon else. A few are like me--bad examples--but most of us have an affection for each other that is based on tthe simple fact that the little machine in opur chests is the major reason we are alive and can expect a normal life span. Sadly, however, I can attest that the ICD will do nothing to raise the quality of your jokes or keep your spouse from complaining about the lack of housework being done.

Hang in their . It really does get better. Especially kwhen you want to spend some time with the grandkids. (That only works if you can keep them from playing their music.)

From California where I finally convinced my wife that ICD stands for I Can't Dust. Unfortunately she committed me to an MRI--Mop Rooms Instead..

Mahanaze

RE: Re: ICD removal

I got it initially because my EF had dropped to 15 after my second pregnancy. It is now 30-35 which is where it has been for most of the last 14 years. I have not had one episode of VT since the defective lead was removed last July. I have class I heart failure and honestly don¢t think I need it. I think it¢s mostly that I resent that I have it given what the last one did to me. It¢s been 7 months since all this happened to me and I¢m still having a hard time getting past it. I¢m preoccupied with my ICD and resent it and I don¢t know how to stop. I have a pulsation there and some pain under my arm near the ICD so those are more constant reminders in addition to my horribly healed scar that I have to look at every day.

I know I¢m not the average but all my ICD has done for me is ruin my life. I need to get over this but I don¢t know how. Hopefully time will help.

From: [mailto: ] On Behalf Of kathyn2Sent: Friday, February 15, 2008 10:04 PM Subject: Re: ICD removal

I have only had my ICD since the end of august but I would never contemplating getting rid of it. I fought getting it like the dickens but I faint about once a week and worry about sudden death. I have V tach. So far my device has never gone off but it gives me a margin of safety. Why would you want to remove it? Mine is irritating. It itches like crazy (I think I am allergic to it!!). It has been almost 6 months and if you try to scratch the itching it hurts really bad. I have never had a wound take so long to heal. Any one else's itch like crazy? Kathy> > Has anyone ever contemplated this? I know my story is very different than the average (www.vtpatients. org/laura. html if you want to read it) but it's something I'm contemplating. My EP said he could not see a scenario where he would remove it

but my cardiologist said she might support it if I thought very carefully about it. I definitely would wait until the battery was drained and possibly not replace it. I know it's extremely uncommon but is there anyone out there who has experience with this?> > > >

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[Guest guest]

Bill,

I couldn’t have said it better. I have never passed out or been

shocked. In fact I don’t even

notice my VT. I have the ICD as a

precaution because the nurses in cardiac rehab went into a panic when the VT

would show up. My plumber did a

bunch of tests and then sent me to an electrician. The electrician did some more tests and decided that an ICD

would be a good idea. My heart was

getting out of the VT on it’s own but no one could say how long that would

last.

Funny thing is I went to a new

plumber and showed him the printout from my last battery check and he commented

that they wouldn’t remove the ICD anyway.

It didn’t even register what he had said until I was home but I think he

was implying that based on what he saw I didn’t need the ICD.

I had a pacemaker for about six

months before the ICD was implanted because of problems that might be caused by

my mechanical heart valve. I have

been told that the battery in the ICD is holding up because my heart doesn’t

require much juice to be paced.

I too have wondered if I really need

the ICD or the pacemaker for that matter.

I have had ticker problems for 17 years without a heart attach that I am

aware of anyway.

Unless someone can convince me

otherwise I will let them keep replacing my ICD. I suspect that the replacement will be easier than the

switch from a pacemaker.

A friend of mine has a couple of

sayings about doctors.

They are only practicing medicine.

50% of them graduated in the bottom

of their class.

A few years ago I cut myself while

helping get ready for Thanksgiving.

Since I am on blood thinners it was taking a long time to get the

bleeding stopped. We called the

doctor and his response was “all bleeding stops eventually”. I felt so much better knowing

that.

Bottom line is I wouldn’t be without

my ICD unless I had multiple doctors all saying that I would be better off

without it.

Joe Schmidt

God

Loves Us All

But isn't

always happy with us!

-----Original

Message-----

From:

[mailto: ]On Behalf Of MARTHA

or BILL MAHAN

Sent: Sunday, February 17, 2008

4:17 AM

Subject: Re: Re: ICD

removal

:

Everyone has

a few days that they will never forget. May 29, 1998 is a day I will

never remember. From the reports of others, I was working outdoors and

collapsed suddenly. The Local Animal Control lady was driving by, stopped

and gave me CPR. The hospital was only about 200 yards away and an

smbulance was there at the ready and dispatched immediately.

I woke up

three days later in the local hospital. I had suffered a Sudden Cardiac

Death from ventrical fibrillation. By all accounts and statistics I have

read, I should now be in the nearby veterans' cemetary making the others there

turn over in their graves with my bad puns. To this day, when I see the

hospital staff who treated me, they all call me The Miracle Man. (My wife

says that's because if I ever do any housework it will be a miracle.)

As soon as I

was well enough, I had an ICD implanted. the implant went smoothly and

there were no postimplant problems at all, something not everyone can

say. Since that implant I've had two replacements, also without any

problems. I do suffer from congestive heart failure (to go along with my

confused brain failure) and my hear irregularities are part of everyday life.

Since getting

my defibrillator I have had several other instances of sudden cardiac death,

and each time I got up off the floor and continued what I was doing and saw my

cardio sometime in the next two or three days. Without the ICD I would

definitely be in that vets' cemetary. Had I had the ICD when I collapsed

on the street, I would have done the same thing. I would have picked

myself up and went about dioing whateer it was that I was doing at the

time. The ICD is the single most successful machine in preventing sudden

death from health reasons. It is interesting to note that recent

statistics compared pre ICD survival rates of approximately 5% with post ICD

survival rates of approcimately 95%. I have had a few firings, once when

I was with friends at a restuarant and I found myself looking at the

ceiling. the ICD did everything it was supposed to do, and I finished my

meal (after assuring the EMT's that came that my normal vitals were what was to

be expected from someone with an ICD that had just zapped me.

If you have

children or grandchildren, you should not even joke about having your ICD

removed. If you do, you will miss all the fun of hiphop music, their

dating people with tattos and body piercings you'd trather not know about, and

the abject fear of relizing that these kids are going to have cars and credit

cards to go with their too-soon adult bodies that they also do not know how to

protect. Please . . . forget about removing your ICD.

Instead go to

a cardio that is sympathetic to your complaints. Cardologists are like

lingerie. If they do not make you feel good, improve your social life and

get you to do things you thought you'd never do again, then get a new

cardiologist. Or be happy wearing corduroy nighties and wondering why you

have cobwebbs in THOSE places.

This group is

perhaps the single best place you will find to talk about the problems of

ICD's, cardiologists, hospitals, medications and flatulence in crowded

elevators. (Okay, the flatulece line wasn't true. I was just

checking to see f you were paying attention.) Some of the people here

have had so many cardiac incidents that they are textbooks unto

themselves. At least one young lady has been advising us old farts (Back

to flatulence again.) since she was sixteen on finding the quality of life we

want while dealing with an ICD that does not make life comfortable and without

disruption.

do not remove

your ICD, and do not leave this group. Each of us has something to throw

into the pot top help someon else. A few are like me--bad examples--but

most of us have an affection for each other that is based on tthe simple

fact that the little machine in opur chests is the major reason we are alive

and can expect a normal life span. Sadly, however, I can attest that the

ICD will do nothing to raise the quality of your jokes or keep your spouse from

complaining about the lack of housework being done.

Hang in their

. It really does get better. Especially kwhen you want to

spend some time with the grandkids. (That only works if you can keep them

from playing their music.)

From

California where I finally convinced my wife that ICD stands for I Can't

Dust. Unfortunately she committed me to an MRI--Mop Rooms Instead..

Mahanaze

-----

Original Message ----

From: Baker <laurarn@...>

Sent: Saturday, February 16, 2008 4:33:50 AM

Subject: RE: Re: ICD removal

I got it initially because my EF had dropped to 15 after my second

pregnancy. It is now 30-35 which is where it has been for most of the last 14

years. I have not had one episode of VT since the defective lead was removed

last July. I have class I heart failure and honestly don¢t think I need it. I

think it¢s mostly that I resent that I have it given what the last one did to

me. It¢s been 7 months since all this happened to me and I¢m still having a

hard time getting past it. I¢m preoccupied with my ICD and resent it and I

don¢t know how to stop. I have a pulsation there and some pain under my arm

near the ICD so those are more constant reminders in addition to my horribly

healed scar that I have to look at every day.

I know I¢m not the average but all my ICD has done for me is ruin

my life. I need to get over this but I don¢t know how. Hopefully time will

help.

From:

[mailto: ] On Behalf Of kathyn2

Sent: Friday, February 15, 2008

10:04 PM

Subject: Re: ICD removal

I have only had my ICD since the end of august but I would

never

contemplating getting rid of it. I fought getting it like the dickens

but I faint about once a week and worry about sudden death. I have V

tach. So far my device has never gone off but it gives me a margin of

safety. Why would you want to remove it? Mine is irritating. It

itches like crazy (I think I am allergic to it!!). It has been almost

6 months and if you try to scratch the itching it hurts really bad. I

have never had a wound take so long to heal. Any one else's itch like

crazy? Kathy

>

> Has anyone ever contemplated this? I know my story is very

different than the average (www.vtpatients. org/laura. html if you want

to read it) but it's something I'm contemplating. My EP said he could

not see a scenario where he would remove it but my cardiologist said

she might support it if I thought very carefully about it. I definitely

would wait until the battery was drained and possibly not replace it. I

know it's extremely uncommon but is there anyone out there who has

experience with this?

>

>

>

>

__________ NOD32 2880 (20080215) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

[Guest guest]

I know that rationally. But I can’t

convince myself that I’m lucky to have it.

I keep thinking about how my ICD tortured

me for 6 months and completely caused everything important in my life to be

removed. And if I hadn’t sought out a second opinion on my own I would be

either dead or waiting for a new heart. All because of my ICD.  Right before I

went to Boston

I was convinced my life was completely over. And all of my problems were caused

by my ICD.

I wish I had the smooth course that all of

you had.. but I didn’t. And I can’t get over it. My husband

reminded me that the device and leads I have now are not the ones that  caused

all my problems and there’s no chance that it will happen again but I

still have the “what if I got shocked right this very second”

thoughts. I keep worrying that at any second it’s going to malfunction

and my life will be taken away from me again. It’s like a cloud that

hangs over me all the time and everytime I look down at that scar I am reminded

of it. Having it there is a constant reminder of the torture that me and my

family went through (I have 3 kids- 3, 3, and 19 months).

I won’t do anything right now. It’s

possible in a couple of years I will have gotten over this. I hope so. My EP told

me he wouldn’t remove it and my cardiologist said that she would support

me but suggested waiting until the battery runs out. I won’t make any

decisions before that.

But right now the fact that it’s

there is perpetuating my PTSD because it’s a constant reminder.

Thanks for your support.. I know I’m

probably the only one in the world who has had these issues.

From: [mailto: ] On Behalf Of MARTHA or BILL MAHAN

Sent: Sunday, February 17, 2008

4:17 AM

Subject: Re: Re: ICD

removal

:

Everyone has a few days that they will never forget. May 29, 1998

is a day I will never remember. From the reports of others, I was working

outdoors and collapsed suddenly. The Local Animal Control lady was

driving by, stopped and gave me CPR. The hospital was only about 200

yards away and an smbulance was there at the ready and dispatched immediately.

I woke up three days later in the local hospital. I had suffered

a Sudden Cardiac Death from ventrical fibrillation. By all accounts and

statistics I have read, I should now be in the nearby veterans' cemetary making

the others there turn over in their graves with my bad puns. To this day,

when I see the hospital staff who treated me, they all call me The Miracle

Man. (My wife says that's because if I ever do any housework it will be a

miracle.)

As soon as I was well enough, I had an ICD implanted. the implant

went smoothly and there were no postimplant problems at all, something not

everyone can say. Since that implant I've had two replacements, also

without any problems. I do suffer from congestive heart failure (to go

along with my confused brain failure) and my hear irregularities are part of

everyday life.

Since getting my defibrillator I have had several other instances of

sudden cardiac death, and each time I got up off the floor and continued what I

was doing and saw my cardio sometime in the next two or three days.

Without the ICD I would definitely be in that vets' cemetary. Had I had

the ICD when I collapsed on the street, I would have done the same thing.

I would have picked myself up and went about dioing whateer it was that I was

doing at the time. The ICD is the single most successful machine in

preventing sudden death from health reasons. It is interesting to note that

recent statistics compared pre ICD survival rates of approximately 5% with post

ICD survival rates of approcimately 95%. I have had a few firings, once

when I was with friends at a restuarant and I found myself looking at the

ceiling. the ICD did everything it was supposed to do, and I finished my

meal (after assuring the EMT's that came that my normal vitals were what was to

be expected from someone with an ICD that had just zapped me.

If you have children or grandchildren, you should not even joke about

having your ICD removed. If you do, you will miss all the fun of hiphop

music, their dating people with tattos and body piercings you'd trather not

know about, and the abject fear of relizing that these kids are going to have

cars and credit cards to go with their too-soon adult bodies that they also do

not know how to protect. Please . . . forget about removing your ICD.

Instead go to a cardio that is sympathetic to your complaints.

Cardologists are like lingerie. If they do not make you feel good,

improve your social life and get you to do things you thought you'd never do

again, then get a new cardiologist. Or be happy wearing corduroy nighties

and wondering why you have cobwebbs in THOSE places.

This group is perhaps the single best place you will find to talk about

the problems of ICD's, cardiologists, hospitals, medications and flatulence in

crowded elevators. (Okay, the flatulece line wasn't true. I was

just checking to see f you were paying attention.) Some of the people

here have had so many cardiac incidents that they are textbooks unto

themselves. At least one young lady has been advising us old farts (Back

to flatulence again.) since she was sixteen on finding the quality of life we

want while dealing with an ICD that does not make life comfortable and without

disruption.

do not remove your ICD, and do not leave this group. Each of us

has something to throw into the pot top help someon else. A few are like

me--bad examples--but most of us have an affection for each other that is based

on tthe simple fact that the little machine in opur chests is the major

reason we are alive and can expect a normal life span. Sadly, however, I

can attest that the ICD will do nothing to raise the quality of your jokes or

keep your spouse from complaining about the lack of housework being done.

Hang in their . It really does get better. Especially

kwhen you want to spend some time with the grandkids. (That only works if

you can keep them from playing their music.)

From California

where I finally convinced my wife that ICD stands for I Can't Dust.

Unfortunately she committed me to an MRI--Mop Rooms Instead..

Mahanaze

Re: ICD removal

I have

only had my ICD since the end of august but I would never

contemplating getting rid of it. I fought getting it like the dickens

but I faint about once a week and worry about sudden death. I have V

tach. So far my device has never gone off but it gives me a margin of

safety. Why would you want to remove it? Mine is irritating. It

itches like crazy (I think I am allergic to it!!). It has been almost

6 months and if you try to scratch the itching it hurts really bad. I

have never had a wound take so long to heal. Any one else's itch like

crazy? Kathy

>

> Has anyone ever contemplated this? I know my story is very

different than the average (www.vtpatients. org/laura. html if you want

to read it) but it's something I'm contemplating. My EP said he could

not see a scenario where he would remove it but my cardiologist said

she might support it if I thought very carefully about it. I definitely

would wait until the battery was drained and possibly not replace it. I

know it's extremely uncommon but is there anyone out there who has

experience with this?

>

>

>

>

__________ NOD32 2880 (20080215) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

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This message was checked by NOD32 antivirus system.

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[Guest guest]

:

I wonder if you have spoken to someone like a counselor to help you

through your fears? I had an episode 11 years ago where I was attacked

by a German Shepherd, knocked down and she basically mauled me and her

owner never did a thing to stop or break off the attack. For a long time

after that I was panic stricken if any large breed dog approached me.

When we moved here to MA from PA where the attack occured, I did seek

counseling and it really helped me to overcome my fear of dogs. The

counciling and our new neighbor's big white German Shepherd who was the

most loving dog you could ever want really helped me overcome my fears.

Now, I can approach, pet and generally relax around large dogs. I

remember what happened, but, it is in the back of my mind, not the first

thing I think of anymore, and the fear is gone. I think that when you

let fear take over and cripple you, you are diminishing the quality of

your life.

Yes you had a bad experience with your old leads, but they are gone now,

you have new ones in place and the problem should have been solved. Look

at the alternatives you can shrink up and hide in fear, and not be a

good mom to your children, and show them that it is ok to be afraid, or

you can meet your fear head on and conquer it.

Personally, I would want to show my children that I lived my life to the

fullest and no matter what did my best to be there for them. None of us

have any control over when the man upstairs says our time is over, when

it is your time, you go. Simple as that. God gave you this opportunity

to extend your life, and you need to think about that and what would

your children feel if you have your ICD taken out, something happens

that the ICD could have saved you but because it wasn't there you died?

I lost my mother when I was 5 years old and my whole life I've missed

her and wished I could have had her here with me. If I were lucky enough

to have had children, I'd be fighting with everything in my power to

live if not for myself but for them...

So, if this fear has totally paralyzed you then maybe you need some

professional help to get through the fear so you can start living your

life again and be the mom that you want to be, to be there for your

children. It is all up to you and the decisions that you make. What ever

you do decide, I'd make darned sure I made the decision with a full

rational mind and not out of fear...

Sincerely,

Jody Champlin

Baker wrote:

> I know that rationally. But I can¢t convince myself that I¢m lucky to

> have it.

>

> I keep thinking about how my ICD tortured me for 6 months and

> completely caused everything important in my life to be removed. And

> if I hadn¢t sought out a second opinion on my own I would be either

> dead or waiting for a new heart. All because of my ICD. Right before I

> went to Boston I was convinced my life was completely over. And all of

> my problems were caused by my ICD.

>

> I wish I had the smooth course that all of you had.. but I didn¢t. And

> I can¢t get over it. My husband reminded me that the device and leads

> I have now are not the ones that caused all my problems and there¢s no

> chance that it will happen again but I still have the " what if I got

> shocked right this very second " thoughts. I keep worrying that at any

> second it¢s going to malfunction and my life will be taken away from

> me again. It¢s like a cloud that hangs over me all the time and

> everytime I look down at that scar I am reminded of it. Having it

> there is a constant reminder of the torture that me and my family went

> through (I have 3 kids- 3, 3, and 19 months).

>

> I won¢t do anything right now. It¢s possible in a couple of years I

> will have gotten over this. I hope so. My EP told me he wouldn¢t

> remove it and my cardiologist said that she would support me but

> suggested waiting until the battery runs out. I won¢t make any

> decisions before that.

>

> But right now the fact that it¢s there is perpetuating my PTSD because

> it¢s a constant reminder.

>

> Thanks for your support.. I know I¢m probably the only one in the

> world who has had these issues.

>

>

>

> ------------------------------------------------------------------------

>

> *From:* [mailto: ] *On

> Behalf Of *MARTHA or BILL MAHAN

> *Sent:* Sunday, February 17, 2008 4:17 AM

> *To:*

> *Subject:* Re: Re: ICD removal

>

> :

>

> Everyone has a few days that they will never forget. May 29, 1998 is a

> day I will never remember. From the reports of others, I was working

> outdoors and collapsed suddenly. The Local Animal Control lady was

> driving by, stopped and gave me CPR. The hospital was only about 200

> yards away and an smbulance was there at the ready and dispatched

> immediately.

>

> I woke up three days later in the local hospital. I had suffered a

> Sudden Cardiac Death from ventrical fibrillation. By all accounts and

> statistics I have read, I should now be in the nearby veterans'

> cemetary making the others there turn over in their graves with my bad

> puns. To this day, when I see the hospital staff who treated me, they

> all call me The Miracle Man. (My wife says that's because if I ever do

> any housework it will be a miracle.)

>

> As soon as I was well enough, I had an ICD implanted. the implant went

> smoothly and there were no postimplant problems at all, something not

> everyone can say. Since that implant I've had two replacements, also

> without any problems. I do suffer from congestive heart failure (to go

> along with my confused brain failure) and my hear irregularities are

> part of everyday life.

>

> Since getting my defibrillator I have had several other instances of

> sudden cardiac death, and each time I got up off the floor and

> continued what I was doing and saw my cardio sometime in the next two

> or three days. Without the ICD I would definitely be in that vets'

> cemetary. Had I had the ICD when I collapsed on the street, I would

> have done the same thing. I would have picked myself up and went about

> dioing whateer it was that I was doing at the time. The ICD is the

> single most successful machine in preventing sudden death from health

> reasons. It is interesting to note that recent statistics compared pre

> ICD survival rates of approximately 5% with post ICD survival rates of

> approcimately 95%. I have had a few firings, once when I was with

> friends at a restuarant and I found myself looking at the ceiling. the

> ICD did everything it was supposed to do, and I finished my meal

> (after assuring the EMT's that came that my normal vitals were what

> was to be expected from someone with an ICD that had just zapped me.

>

> If you have children or grandchildren, you should not even joke about

> having your ICD removed. If you do, you will miss all the fun of

> hiphop music, their dating people with tattos and body piercings you'd

> trather not know about, and the abject fear of relizing that these

> kids are going to have cars and credit cards to go with their too-soon

> adult bodies that they also do not know how to protect. Please . . .

> forget about removing your ICD.

>

> Instead go to a cardio that is sympathetic to your complaints.

> Cardologists are like lingerie. If they do not make you feel good,

> improve your social life and get you to do things you thought you'd

> never do again, then get a new cardiologist. Or be happy wearing

> corduroy nighties and wondering why you have cobwebbs in THOSE places.

>

> This group is perhaps the single best place you will find to talk

> about the problems of ICD's, cardiologists, hospitals, medications and

> flatulence in crowded elevators. (Okay, the flatulece line wasn't

> true. I was just checking to see f you were paying attention.) Some of

> the people here have had so many cardiac incidents that they are

> textbooks unto themselves. At least one young lady has been advising

> us old farts (Back to flatulence again.) since she was sixteen on

> finding the quality of life we want while dealing with an ICD that

> does not make life comfortable and without disruption.

>

> do not remove your ICD, and do not leave this group. Each of us has

> something to throw into the pot top help someon else. A few are like

> me--bad examples--but most of us have an affection for each other that

> is based on tthe simple fact that the little machine in opur chests is

> the major reason we are alive and can expect a normal life span.

> Sadly, however, I can attest that the ICD will do nothing to raise the

> quality of your jokes or keep your spouse from complaining about the

> lack of housework being done.

>

> Hang in their . It really does get better. Especially kwhen you

> want to spend some time with the grandkids. (That only works if you

> can keep them from playing their music.)

>

> From California where I finally convinced my wife that ICD stands for

> I Can't Dust. Unfortunately she committed me to an MRI--Mop Rooms

> Instead..

>

> Mahanaze

>

> * Re: ICD removal

>

> I have only had my ICD since the end of august but I would never

> contemplating getting rid of it. I fought getting it like the dickens

> but I faint about once a week and worry about sudden death. I have V

> tach. So far my device has never gone off but it gives me a margin of

> safety. Why would you want to remove it? Mine is irritating. It

> itches like crazy (I think I am allergic to it!!). It has been almost

> 6 months and if you try to scratch the itching it hurts really bad. I

> have never had a wound take so long to heal. Any one else's itch like

> crazy? Kathy

>

> >

> > Has anyone ever contemplated this? I know my story is very

> different than the average (www.vtpatients. org/laura. html if you want

> to read it) but it's something I'm contemplating. My EP said he could

> not see a scenario where he would remove it but my cardiologist said

> she might support it if I thought very carefully about it. I definitely

> would wait until the battery was drained and possibly not replace it. I

> know it's extremely uncommon but is there anyone out there who has

> experience with this?

> >

> >

> >

> >

>

>

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>

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>

>

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>

> This message was checked by NOD32 antivirus system.

> http://www.eset.com <http://www.eset.com>

>

>

[Guest guest]

Well Said Jody.

~guin

* Re: ICD removal

>>

>> I have only had my ICD since the end of august but I would never

>> contemplating getting rid of it. I fought getting it like the dickens

>> but I faint about once a week and worry about sudden death. I have V

>> tach. So far my device has never gone off but it gives me a margin of

>> safety. Why would you want to remove it? Mine is irritating. It

>> itches like crazy (I think I am allergic to it!!). It has been almost

>> 6 months and if you try to scratch the itching it hurts really bad. I

>> have never had a wound take so long to heal. Any one else's itch like

>> crazy? Kathy

>>

>> >

>> > Has anyone ever contemplated this? I know my story is very

>> different than the average (www.vtpatients. org/laura. html if you want

>> to read it) but it's something I'm contemplating. My EP said he could

>> not see a scenario where he would remove it but my cardiologist said

>> she might support it if I thought very carefully about it. I definitely

>> would wait until the battery was drained and possibly not replace it. I

>> know it's extremely uncommon but is there anyone out there who has

>> experience with this?

>> >

>> >

>> >

>> >

>>

>>

>> __________ NOD32 2880 (20080215) Information __________

>>

>> This message was checked by NOD32 antivirus system.

>> http://www.eset.com <http://www.eset.com/>

>>

>>

>> __________ NOD32 2881 (20080217) Information __________

>>

>> This message was checked by NOD32 antivirus system.

>> http://www.eset.com <http://www.eset.com>

>>

>>

>

>

>

> Be sure to visit and use other ZapLife.org services:

>

> The ZapperBBS at

> http://zaplife.org/phpBB2/viewforum.php?f=1

> 1 - Email list forum at

> /

> 2 - Email delivery of the Zapper Newsletter at

> 2/

> 3 - Email list forum for those involved in ICD litigation at

> 3/

> ZapChat - Real time online support group (Thursdays 8PM EST) at

> http://www.zaplife.org/chat.html

> ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at

> http://www.zaplife.org/zap4.htm

> The ZAPPER Home page at

> http://www.zaplife.org/

>

[Guest guest]

dear luar nt ne day ges by that i dont think about the very firsted time my icd first it was inaporpated if fired off 20 times that day the lead sencseing was off since then i have been shocked well over 2,500 times not a day goes bye that i dont wonder or fear a shock ! i cant count hw minny times i have told the doctor get this "thing" out of me and feeling that it was causeing more harm then good ! yes it's saved my life years i've had it replaced as needed and yes i still dnt like it when it shocks and still fear the next shock the way i over came the fear was with sean because i knew if we was out in public and it fired sean wouldnt laugh i wouldnt be as scared he gave me the curage along with peole here to face my fears i went to consulrs minny times when i firsted had my icd implanted but what helped me the most was sean and knowing i could count on him

but not a day goes bye that i dont fear the shocks or the "praatice shocks that are not needed " everyone has to find what works best for you have you though about loking in home theraphy dog ? or a service dog that could go out with you? i know that when shean was with me i didnot fear going out in publiec or ff on my wn because i knew if soemthing happened needed or not he was there and he would comfert me and not turn his back on me or laugh but sit patiantly with em then when it was ver he would lay his haed on my lap and just wag his tail i found confeter and serurtiy because i knew if i passed out he culd get help or if i was at home he could call for help anyways the point beign find hat works for you may not need the icd now but there may cme a tiem when you do and when that time comes my may not get a secund

chance to reget the decicion to have the device taken out ! i wish you luck dont give up you will find what helps with the stress feel free to email me if you would like off list stacie and sean missing my budding on outings ! Guin Van Dyke <guin@...> wrote: Well Said Jody.~guin* Re: ICD removal>>>> I have only had my ICD since the end of august but I would never>> contemplating getting rid of it. I fought getting it like the dickens>> but I faint about once a week and worry about sudden death. I have V>> tach. So far my device has never gone off but it gives me a margin of>> safety. Why would you want to remove it? Mine is irritating. It>> itches like crazy (I think I am allergic to it!!). It has been almost>> 6 months and if you try to scratch the itching it hurts really bad. I>> have never had a wound take so long to heal. Any one

else's itch like>> crazy? Kathy>>>> >>> > Has anyone ever contemplated this? I know my story is very>> different than the average (www.vtpatients. org/laura. html if you want>> to read it) but it's something I'm contemplating. My EP said he could>> not see a scenario where he would remove it but my cardiologist said>> she might support it if I thought very carefully about it. I definitely>> would wait until the battery was drained and possibly not replace it. I>> know it's extremely uncommon but is there anyone out there who has>> experience with this?>> >>> >>> > >> >>>>>>> __________ NOD32 2880 (20080215) Information __________>>>> This message was checked by NOD32 antivirus system.>> http://www.eset.com >>>>>> __________ NOD32 2881 (20080217) Information __________>>>> This message was checked by NOD32 antivirus system.>> http://www.eset.com >>>>>>>> Be sure to visit and use other ZapLife.org services:>> The ZapperBBS at> http://zaplife.org/phpBB2/viewforum.php?f=1> 1 - Email list forum at> /> 2 - Email delivery of the Zapper Newsletter at> 2/> 3 - Email list forum for those involved in ICD litigation at> 3/> ZapChat - Real time online support group (Thursdays 8PM EST) at> http://www.zaplife.org/chat.html> ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at>

http://www.zaplife.org/zap4.htm> The ZAPPER Home page at> http://www.zaplife.org/>

[Guest guest]

stacie and sean missing my budding on outings !

Stacie - does this mean that since is retired that he does not go out with you anymore? Is he still able to call for you when you are home? Will you get another service dog for when you go out?

Thank you for all words of encouragement.

~guin

[Guest guest]

I have tried sending this message out several times - it appears to get lost in cyberspace. I will try again!

;

Given all that you have said below. First of all time heals all. Second of all - have you thought of counseling. I think that could really help you. Are you on xanax or something of the kind for anxiety? That might help you for awhile as well. You need to somehow get past all of this. I think suing the Doc who put you through hell would not be a good thing for you (stress wise) but he should not be practicing from what you have said. I have had three ICD's over the last 9 years -- NO trouble. Thank God.

I wish you all the luck and peace possible.

~guin

[Guest guest]

I was on Ativan and Wellbutrin during the

ordeal..I’m off now. I think you’re right.. I do need to see a

counselor again. I stopped seeing her in October because I thought I was ok.

As for litigation.. it was simply a case

of the EP team not realizing that my incessant VT was being caused by my leads

(and not listening to the patient who kept insisting that the leads were the

problem). I have a lot of anger there but I am persuing action against

Medtronic because I of course had a Fidelis lead. I have switched EP doctors as

well.

Thanks everyone.. it means a lot.

From: [mailto: ] On Behalf Of Guin Van Dyke

Sent: Sunday, February 17, 2008

1:58 PM

Subject: Re: Re: ICD

removal

I have tried sending this message out several times -

it appears to get lost in cyberspace. I will try again!

;

Given all that you have said below. First of all time

heals all. Second of all - have you thought of counseling. I think

that could really help you. Are you on xanax or something of the kind for

anxiety? That might help you for awhile as well. You need to

somehow get past all of this. I think suing the Doc who put you through

hell would not be a good thing for you (stress wise) but he should not be

practicing from what you have said. I have had three ICD's over the last

9 years -- NO trouble. Thank God.

I wish you all the luck and peace possible.

~guin

__________ NOD32 2881 (20080217) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

[Guest guest]

sean was retired do to a spine disorder called wobblers it's where the pine is swling putign presure on his spine and will evenacly parilize him he is haing effects in his hind end and paw when a dog is retired they dont go on outings sean has been unable to prefrm the k9 phone ( call fr help ) do to his disease it is a very progressive disaese vet dont want him doing task as it would cause stress him and could cause the disease toprogress faster ! i'm in the proses of getting another service dog (waitign for it to train ) in the main time i am doing fundraiseign to help cover the costf trainign and team training ( two weeks learning to work with that specific doggie ) i have to ask jons premisn but i am settign up a websit to tell more about the need and if a person wishes to donate they would eb able to though the website or throught the website thats trainign the dog but i have to

ask jon before i send the link though zapplist i'm hopeing that even if people cant help they could forward the website to others and help that way maybe get the funding needed raised rightnow the service dog group is in the proccess of training seans successer that will be able to go with me although i'm not sure he/she will alert t my heart like sean des though ! but i'm sure it will be just as loveing as sean is ! it takes 6month to a year for a service dog to be trained stacie and sean missign my boy on outngs !Guin Van Dyke <guin@...> wrote: stacie and sean missing my budding on outings ! Stacie - does this mean that since is retired that he does not go out with you anymore? Is he still able to call for you when you are home? Will you get another service dog for when you go out? Thank you for all words of encouragement. ~guin

[Guest guest]

You have alot to deal with, I think you are headed in a good direction -- just keep going and continue to let us know how we can help.

Keep us posted.

~guin

RE: Re: ICD removal

I was on Ativan and Wellbutrin during the ordeal..I’m off now. I think you’re right.. I do need to see a counselor again. I stopped seeing her in October because I thought I was ok.

As for litigation.. it was simply a case of the EP team not realizing that my incessant VT was being caused by my leads (and not listening to the patient who kept insisting that the leads were the problem). I have a lot of anger there but I am persuing action against Medtronic because I of course had a Fidelis lead. I have switched EP doctors as well.

Thanks everyone.. it means a lot.

From: [mailto: ] On Behalf Of Guin Van DykeSent: Sunday, February 17, 2008 1:58 PM Subject: Re: Re: ICD removal

I have tried sending this message out several times - it appears to get lost in cyberspace. I will try again!

;

Given all that you have said below. First of all time heals all. Second of all - have you thought of counseling. I think that could really help you. Are you on xanax or something of the kind for anxiety? That might help you for awhile as well. You need to somehow get past all of this. I think suing the Doc who put you through hell would not be a good thing for you (stress wise) but he should not be practicing from what you have said. I have had three ICD's over the last 9 years -- NO trouble. Thank God.

I wish you all the luck and peace possible.

~guin__________ NOD32 2881 (20080217) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

----- Original Message ----From: ph Schmidt

I have the ICD as a precaution because the nurses in cardiac rehab went into a panic when the VT would show up. My plumber did a bunch of tests and . . . .

Joe:

You should go to a cardiologist. Fiorst of all they are cheaper. then they do not trsack up your living room when they show up, and finally you don't have to look at their butt crack while they are working.

From California where going to a real plumber or electrician might not be sudh a bad idea. At least you'll get someone who belongs to a union whose dues are a little cheaper than malpractice insurance.

mahanaze

[Guest guest]

Baker wrote:

>

> I got it initially because my EF had dropped to 15 after my second

> pregnancy. It is now 30-35 which is where it has been for most of the

> last 14 years. I have not had one episode of VT since the defective

> lead was removed last July. I have class I heart failure and honestly

> don’t think I need it. I think it’s mostly that I resent that I have

> it given what the last one did to me. It’s been 7 months since all

> this happened to me and I’m still having a hard time getting past it.

> I’m preoccupied with my ICD and resent it and I don’t know how to

> stop. I have a pulsation there and some pain under my arm near the ICD

> so those are more constant reminders in addition to my horribly healed

> scar that I have to look at every day.

>

> I know I’m not the average but all my ICD has done for me is ruin my

> life. I need to get over this but I don’t know how. Hopefully time

> will help.

>

>

>

> ------------------------------------------------------------------------

>

> *From:* [mailto: ] *On

> Behalf Of *kathyn2

> *Sent:* Friday, February 15, 2008 10:04 PM

> *To:*

> *Subject:* Re: ICD removal

>

> I have only had my ICD since the end of august but I would never

> contemplating getting rid of it. I fought getting it like the dickens

> but I faint about once a week and worry about sudden death. I have V

> tach. So far my device has never gone off but it gives me a margin of

> safety. Why would you want to remove it? Mine is irritating. It

> itches like crazy (I think I am allergic to it!!). It has been almost

> 6 months and if you try to scratch the itching it hurts really bad. I

> have never had a wound take so long to heal. Any one else's itch like

> crazy? Kathy

>

> >

> > Has anyone ever contemplated this? I know my story is very

> different than the average (www.vtpatients.org/laura.html if you want

> to read it) but it's something I'm contemplating. My EP said he could

> not see a scenario where he would remove it but my cardiologist said

> she might support it if I thought very carefully about it. I definitely

> would wait until the battery was drained and possibly not replace it. I

> know it's extremely uncommon but is there anyone out there who has

> experience with this?

> >

> >

> >

> >

>

>

> __________ NOD32 2880 (20080215) Information __________

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>

You well be OK .This group is awesome they helped me alot. Listen to

them. Lynn From Florida

[Guest guest]

Thanks everyone. I know you're right.

Honestly..

Do you ever look at yourself as less of a person because you have a THING in

your chest that you're dependent on or else you could die at any second? I

keep thinking.. people I haven't seen in the last year don't know about it..

I look at chest xrays of people who don't have one and when I swim at the Y

people who don't have a scar like mine.. and think THEY don't need this

THING in their chest. I look at stuff from over a year ago (pictures, even

pieces of paper) and think I didn't have an ICD when I did that.. my life

has been divided into BEFORE VT and AFTER VT.

I know it's ridiculous. But it's how I feel.

* Re: ICD removal

>

> I have only had my ICD since the end of august but I would never

> contemplating getting rid of it. I fought getting it like the dickens

> but I faint about once a week and worry about sudden death. I have V

> tach. So far my device has never gone off but it gives me a margin of

> safety. Why would you want to remove it? Mine is irritating. It

> itches like crazy (I think I am allergic to it!!). It has been almost

> 6 months and if you try to scratch the itching it hurts really bad. I

> have never had a wound take so long to heal. Any one else's itch like

> crazy? Kathy

>

> >

> > Has anyone ever contemplated this? I know my story is very

> different than the average (www.vtpatients.org/laura.html if you want

> to read it) but it's something I'm contemplating. My EP said he could

> not see a scenario where he would remove it but my cardiologist said

> she might support it if I thought very carefully about it. I definitely

> would wait until the battery was drained and possibly not replace it. I

> know it's extremely uncommon but is there anyone out there who has

> experience with this?

> >

> >

> >

> >

>

>

> __________ NOD32 2880 (20080215) Information __________

>

> This message was checked by NOD32 antivirus system.

> http://www.eset.com <http://www.eset.com>

>

>

You well be OK .This group is awesome they helped me alot. Listen to

them. Lynn From Florida

Be sure to visit and use other ZapLife.org services:

The ZapperBBS at

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1 - Email list forum at

/

2 - Email delivery of the Zapper Newsletter at

2/

3 - Email list forum for those involved in ICD litigation at

3/

ZapChat - Real time online support group (Thursdays 8PM EST) at

http://www.zaplife.org/chat.html

ZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations at

http://www.zaplife.org/zap4.htm

The ZAPPER Home page at

http://www.zaplife.org/

[Guest guest]

, I am so sorry that you are feeling so sad and have had so many problems with you ICD. I don't have an ICD, but my husband had his implanted last July after being diagnosed with cardiomyopathy and CHF, probably from a virus, last March. His EF was 10 and the doctor says that it still is, although Mark is doing very well. He went through a period of depression and hated his ICD. It is very noticeable through his shirts and he hasn't been swimming yet, but I think he will this summer. It sticks out a good 1/2" from his body. He finally decided that if it enabled him to live longer so that he could spend more time with his family, he would accept it. He now calls it "pal". I know that after he got it, I could allow myself to sleep without constantly waking to make sure that he was still breathing. It has been a Godsend for my son and me. His health is a constant worry for me, but I am more at ease

letting him out of my sight now. I hope that you can get some counseling that will make you feel more at ease with your ICD. Mark felt different from everyone else when he got his and was very bitter that he needed one. He now wishes that his both of his parents had received one, because it might have at saved both of them when they died suddenly. Our 13 year old is now being checked annually at our local children's hospital genetic and arrythmia clinic, to see if there is a gene somewhere that is causing heart problems in the family. He was suspected of having Long QT. I am glad that if they do decide that he has inherited a heart condition, that he can have an ICD implanted to help prolong his life. He and his father ARE my life. I would bet that your family feels the same way about you. Bonnie York Baker <laurarn@...> wrote: The ZapperBBS at http://zaplife.org/phpBB2/viewforum.php?f=1 http://www.zaplife.org/ .

Never miss a thing. Make your homepage.

[Guest guest]

dear laura i have never had a before vt after vt life my whole life i have had vt i have had a before implant after and i can say yes i do sometiems wonder what life would hve been like or if i would even have life ! i dont regret the icd i HATE the shocks !!!! i know my life was no diffrent before the icd as t after EXPTED i had a safety maeusre installed ! it's not a matter of two diffrent lives for me because there both the before device after device i dealt with the same issuses only diffrence is befre i worried about what happens if i WAS walking and i went into vt or if i was doing a activiey and went into vt would i live would i die would i be able to make it to a safe place ?? after my icd i wrried worry as much if i will die i do fearbeing shocked but i know that the shock will "save " my life and that is worth the price of the scare besides that i have

had way to minny scares from sugerys to worry about one more /!!!! i guess it really depend hw you see life ! and how you see your self i've never had a normal life so i ahve never comapair pre and post health issuses ! i have learned that there are chanlinges in everyones life and yes a device des cme with a scar but waer the scar well and be prould becuase smeday your life may depend n that scar and that device even if yu dont have the device the scar will still be there !!!!! be prould you have had a chance to life a mnorml life to expercine life to the fullest because alt f us havent i know i'll never kno what it's like to run or to go n a hike or ust plan go out to lunch with freinds and not be worn out yu shouldnt be regetign a choice you should be greatful fr that choice there a saying a a dance amrithon i think would fit here " we dance because we can we stand for those who cant " i dnt knwo what you'll find with those word

but what i take from thim is be prould of what you can do nw and not sad that yu dont have your old life because there always somene who would just flip and be the happies person in the wrld to be able to d what you can do ! stacie24 ad sean sad my buddie cant go on outing with me ! i miss ihim n outign s much Baker <laurarn@...> wrote: Thanks everyone. I know you're right.Honestly..Do you ever look at yourself as less

of a person because you have a THING inyour chest that you're dependent on or else you could die at any second? Ikeep thinking.. people I haven't seen in the last year don't know about it..I look at chest xrays of people who don't have one and when I swim at the Ypeople who don't have a scar like mine.. and think THEY don't need thisTHING in their chest. I look at stuff from over a year ago (pictures, evenpieces of paper) and think I didn't have an ICD when I did that.. my lifehas been divided into BEFORE VT and AFTER VT.I know it's ridiculous. But it's how I feel. * Re: ICD removal>> I have only had my ICD since the end of august but I would never> contemplating getting rid of it. I fought getting it like the dickens> but I faint about once a week and worry about sudden death. I have V> tach. So far my device has never gone off but it gives me a margin of> safety. Why would you want to remove it? Mine is

irritating. It> itches like crazy (I think I am allergic to it!!). It has been almost> 6 months and if you try to scratch the itching it hurts really bad. I> have never had a wound take so long to heal. Any one else's itch like> crazy? Kathy>> >> > Has anyone ever contemplated this? I know my story is very> different than the average (www.vtpatients.org/laura.html if you want> to read it) but it's something I'm contemplating. My EP said he could> not see a scenario where he would remove it but my cardiologist said> she might support it if I thought very carefully about it. I definitely> would wait until the battery was drained and possibly not replace it. I> know it's extremely uncommon but is there anyone out there who has> experience with this?> >> >> > > >>>> __________ NOD32 2880 (20080215)

Information __________>> This message was checked by NOD32 antivirus system.> http://www.eset.com <http://www.eset.com>>> You well be OK .This group is awesome they helped me alot. Listen to them. Lynn From FloridaBe sure to visit and use other ZapLife.org services:The ZapperBBS at http://zaplife.org/phpBB2/viewforum.php?f=11 - Email list forum at/2 - Email delivery of the Zapper Newsletter at2/3 - Email list forum for those involved in ICD litigation at3/ZapChat - Real time online support group (Thursdays 8PM EST) athttp://www.zaplife.org/chat.htmlZapFAQs'>http://www.zaplife.org/chat.htmlZapFAQs - A glossary of ICD/arrhythmia terms and abbreviations athttp://www.zaplife.org/zap4.htmThe'>http://www.zaplife.org/zap4.htmThe ZAPPER Home page athttp://www.zaplife.org/

[Guest guest]

, I too am sorry that you are having so many issues to deal with. I too have an ICD for LQT syndrome. I have had my buddy since 2005 and now my 28 year old daughter has one also. Neither have fired but we are paced a lot to keep our beats evenly porportioned as I see it as LQT does not like pauses,,,the VT thingy. Anyway, we feel much better and have a structurally sound heart so it sucks but I realize if I ever need it, it can save my life. I was miserable before as I continually passed out or near fainted in the worst places and was afraid I would not recover from next one each time, I was afraid to pickup my grandchildren, drive my car etc. I am on a long QT support forum...there are people there that have had their device as many as 9 years that I can recall with no incidence or ever shocked and then bam out of of nowhere it saved their life. My point is it may not be needed every day but I feel so lucky to live in an age where this is available to me and my daughter. I hope you are able to make "peace" with this new part of your body, my husband says it's beautiful, I know it's ugly but probably because its part of my heart which helps us love one and other. I must add that I just got back from a trip to console my best friend who lives far away from me in Oklahoma, her hubby passed in his sleep, didn't get the chance for help for his CHF, his appointment was next week. I can tell you his wife wishes she had him back and that he would have had the chance to have a second chance at life. He thought he was fine. I will pray your device becomes your friend and after hearing all of the input from everyone who cares about you that you can make a wise choice of your own. It is your life, you are the one that has to be comfortable and live with your decision although I'm sure your family has comfort in knowing you are protected too. Beauty is only skin deep they say, in our cases, deeper is better (doesn't show as much)!

Hugs to you,

Judi

RE: Re: ICD removal

,

I am so sorry that you are feeling so sad and have had so many problems with you ICD. I don't have an ICD, but my husband had his implanted last July after being diagnosed with cardiomyopathy and CHF, probably from a virus, last March. His EF was 10 and the doctor says that it still is, although Mark is doing very well. He went through a period of depression and hated his ICD. It is very noticeable through his shirts and he hasn't been swimming yet, but I think he will this summer. It sticks out a good 1/2" from his body. He finally decided that if it enabled him to live longer so that he could spend more time with his family, he would accept it. He now calls it "pal". I know that after he got it, I could allow myself to sleep without constantly waking to make sure that he was still breathing. It has been a Godsend for my son and me. His health is a constant worry for me, but I am more at ease letting him out of my sight now. I hope that you can get some counseling that will make you feel more at ease with your ICD. Mark felt different from everyone else when he got his and was very bitter that he needed one. He now wishes that his both of his parents had received one, because it might have at saved both of them when they died suddenly. Our 13 year old is now being checked annually at our local children's hospital genetic and arrythmia clinic, to see if there is a gene somewhere that is causing heart problems in the family. He was suspected of having Long QT. I am glad that if they do decide that he has inherited a heart condition, that he can have an ICD implanted to help prolong his life. He and his father ARE my life. I would bet that your family feels the same way about you.

Bonnie York

Baker <laurarnrochester (DOT) rr.com> wrote:

The ZapperBBS at

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http://www.zaplife.org/

..

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[Guest guest]

>

> Thanks everyone. I know you're right.

>

> Honestly..

>

> Do you ever look at yourself as less of a person because you have a

THING in

> your chest that you're dependent on or else you could die at any

second? I

> keep thinking.. people I haven't seen in the last year don't know

about it..

> I look at chest xrays of people who don't have one and when I swim

at the Y

> people who don't have a scar like mine.. and think THEY don't need

this

> THING in their chest. I look at stuff from over a year ago

(pictures, even

> pieces of paper) and think I didn't have an ICD when I did that..

my life

> has been divided into BEFORE VT and AFTER VT.

>

> I know it's ridiculous. But it's how I feel.

,

I'm the father of 3 grown children and grandfather of 8. My wife of

nearly 15 years is not the first. Forgive me and please know that I

mean no offense and don't feel superior - I just have a different

perspective - but I'm going to presume to lecture you just a bit ...

You are NOT " less of a person " because you have an ICD ... none of us

are.

You need to accept that your scar is insignificant. I lost a wife of

10 years to breast cancer in 1990 when she was only 43 ... the last 4

years of her life were post-masectomy. Her scar (much larger than

yours and mine, I'm sure) was also insignificant and I made damned

sure she knew it. You are not your scar, you're obviously a sweet

(and perhaps too sensitive for your own good in some ways) person.

THAT's the important part.

The " THING " (as you refer to your device) is an inanimate object that

is there to HELP you. Look at the stats ... probability of survival

of a therapy requiring event without defib <=5%, with defib >95%.

You MUST get some help with these emotional issues about your ICD.

Your ICD is your FRIEND, *not* your enemy, but you apparently need

help to get that thought clearly established.

You NEED to get that clearly established for your own good and for

the good of those who love you.

Change cardios and/or EPs if you need to. Find some sort of local

support group or counselor that you feel comfortable with. Take care

of these problems before they consume you any more, please.

<end of lecture>

Please accept this in the concerned, " fatherly advice " spirit in

which it is intended.

With friendship and concern,

Carl

[Guest guest]

I have been following the posts regarding how some folks have been

sharing with you how they have been dealing with having an ICD and

what problems have occurred and what they were able to do about those

issues.

We all have different types of problems and similar ones at the same

time, being the types of heart disease, devises and leads issues such

as pain and itch and appearance etc. and going further the recent

issues about defective ICDs have made a lot of people VERY scared and

very aware of the frailty of their (our) situations and futures.

I was one of the 'lucky' ones in that I've been told that my ICD is

classed as the " gold standard " by one Medtronic doctor. Boy! did that

make me feel good.

There is one issue that I didn't notice as being mentioned. and that

is about insurance. These ICDs and the operations involved are very

costly in the US from what I understand and wouldn't be implanted

unless really deemed necessary, and just for the implant alone I

believe that someone mentioned that for the devise and the first

operation it was in excess of $80,000 in total - I don't know how much

of that is covered by your insurance plans. (I live in Canada and all

of my tests, doctors visits, hospitalizations, operations ,cost of

devise,medications that cost about $500 a months, the monthly INR

tests needed,the every - 6 month interrogations, all of those things

are paid for by our provincial insurance plan for which coverage we

pay about $600 a year.). What I have never asked, but since reading

these posts now do wonder, what would happen if an ICD was removed at

the request of the patient, and then in a few years was deemed really

necessary again (provided one is still alive if not protected by that

ICD) costwise? would the insurance agree to cover inserting a new one

again ? Replacements to existing ICDs occur when required based on

need as established by the specialists, not when an individual

requests it. I guess a person could get one again by paying for it

without insurance but that would be very hard on a budget especially

if one has a family to support (or a person is rich and not worried

about costs).

another issues to think about would be that whether a person keeps the

ICD or has it taken out, that scar is still going to be there - for

life. I think of mine as a badge of honour, as my lifesaver, and

actually show it and Explain what it is and what it is doing for me,

to anyone who is curious. I don't think of it as ugly, what's the

point? It's a pretty cool thing of have one's very own 'paddles' to

carry around all the time as a precaution. I am not anxious for mine

to ever zap me, it's been about 3 years now since I got mine, I call

him Linus, (which is the little Peanuts fella who carries his little

blankee around for comfort). My grandkids are pleased that Gramma has

protection and my son and daughterinlaw don't have to worry because

they know that I have my ICD and a marvellous team of specialists to

monitor me. I feel so blessed. but it took awhile to get to that

point, I certainly didn't feel very blesses when the EP told me I'd

likely be dead within 3 years if I didn't have an ICD implant. didn't

take me long to say yes, even though it scared me even more than

having a stroke had.

Downsides? I loved my work and because of a stroke in 2003 and then

this heart problem, I have now been on disability for going on 5

years, my life changed overnight, my chances now of finding a partner

(been divorced for years) are now slim to none who would want to take

up with someone who has 'all these problems' , I have to pay out big

bucks for someone to come in to bathe me as I get dizzy and fall

often, (I live alone but lived alone before the health problems so

that part is no big deal). But to have a husband who loves me, and

three children, what a lot that would be to live for, I sure wouldn't

want to lose them because of feeling bad all the time about what

happened to me, no matter whose fault it is or how or why it happened

(I would think of it as a serious accident that just wasn't my fault)

I have refused to feel sorry for myself , and that took a lot of inner

struggle, and I have had to find new ways to get support for the

changes in my life, and I've just learned to live in a different way,

one of the toughest things was to overcome that feeling of now being

looked at as being suddenly old and decrepid. I now have a walker and

a scooter. I have a license plate that says " Diva " , I have joined the

Red Hat Society and dressup in purple and red, and have fun, but to do

that, I take antidepressants daily to keep my from slipping into

depression which is sooo easy to do, and have to take all kinds of

medicines just to maintain a semblance of normal life (that 's now

about $500 to $600 a month). again, thank goodness for insurance that

pays 80% of that cost). Everybody that knows me has had at least one

lecture about getting heart checkups. and I do have a friend who

recently dropped dead with no warning while bike riding with friends.

He was only 40 . Had he been protected with an ICD, he would be alive

and well and happy today with his 3 year old and loving wife. One

never knows the future. I now take all the help I can get. I think

that I've said enough for today. I do have a knack for going on and

on. If I could joke like Bill, my ranting could be more palatable. oh

well. Keep safe and be happy - and I suggest to anyone who is having

issues, to get some of those antidressants, they can be lifesavers for

this weird new life of ours. and I thank God every day for allowing me

more life. I intend to take this time to be happy.

all the best, Lynda.

>

>

>

>

>

>

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