no subject

[Guest guest]

Jon,

I visited my EP dr. Wednesday to download the new software as my new defib was

one with the software glitch. The CPI rep in Augusta, GA is wonderful and she

let me and all the drs. know as soon as she was contacted. Thanks for the

update.

------------------------------------------------------------------------

E-group home: http://www.eGroups.com/list/

[Guest guest]

Hi Jack -- I too have an ICD and am on Cordarone and, so far, have not

been zapped with this combination. Before I was started on Cordarone,

however, I was zapped 3 times. The only thing I have ever felt is this

instantaneous sensation as if I was going to faint (and 2 times I did

become unconscious before I was actually zapped--upon being checked my

heart rate had been 300). The third time I had the same feeling and was

zapped before I could ever react--it was that quick. It was quite a

jolt but really not that bad, and I was disoriented for several minutes

afterwards. All 3 times happened while I was at rest, doing nothing

more than chatting with a friend & reading the newspaper.

This is the way it was for me. You sound like you are doing great, and

I hope it continues that way. Anita from NC

------------------------------------------------------------------------

[Guest guest]

Jack:

I think that the felling you get before a episode of V.T. is different for

evrybody, I get a funny feeling in my chest, and when I get it I have

learned that I need to stop what I'm doing and just rest, because if I go on

I am going to go into V.T and get zapped. I have learned what this feeling

is from going through it and getting zapped (three times) but it is real

hard to describe what it feels like, and it will probably be different in

your case. But I do get a warning before it happens, and I also take trips

and pull a trailer, so if you start to feel strange, or unusual I would

suggest stopping for awhile and resting. It usually only takes about an hour

or two for it to pass for me. Best of luck and enjoy your trip.

Gordon H. Sears

------------------------------------------------------------------------

[Guest guest]

The only warning I get before being zapped is starting to pass out.

About the time I hit the floor, I get zapped back. I have been one step

away from a chair, felt myself starting to pass out, and could not even

get to the chair--passed out on the floor.

But for you, Jack, certainly going 6 months without a zap is a good

sign. I am now able to drive again (although I am too scared yet to get

on the freeway) and go in a swimming pool - had to go 6 months without

losing consciousness. I wish you all the best in your travels!

nobody@... wrote:

> ...first I would like to wish you the best of luck !!

>

> I,Jack, have been reading the notes from everyone and it has been very

> usefull.

> Thank-you to all !! This is my first time sending a note.

> I have had my defibrillator for 6 months now and have not had a zap. I

> am also on Cordarone and feel great. I have VT and I also have

> another arrhythmia that causes dizzy spells. The cordarone has so far

> taken care of both. Sometimes I even forget that I have the

> defibrillator.

> I still drive and plan on taking a long trip pulling a 5th wheel.

> What I would like to know is....does anyone ever get a phyical warning

> before they get a zap? If so, what does the warning feel like ?

>

> Jack & Kathy

>

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

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

> Fresh flowers are the perfect way to say " I love you " .

> Shipped direct from the grower, Proflowers.com has

> arrangements from $29.95 plus S & H.

> Click here: http://offers./click/216/0

>

>

[Guest guest]

Anita,

Thank you for your reply !!

Jack & Kathy

Re: No Subject

>Hi Jack -- I too have an ICD and am on Cordarone and, so far, have not

>been zapped with this combination. Before I was started on Cordarone,

>however, I was zapped 3 times. The only thing I have ever felt is this

>instantaneous sensation as if I was going to faint (and 2 times I did

>become unconscious before I was actually zapped--upon being checked my

>heart rate had been 300). The third time I had the same feeling and was

>zapped before I could ever react--it was that quick. It was quite a

>jolt but really not that bad, and I was disoriented for several minutes

>afterwards. All 3 times happened while I was at rest, doing nothing

>more than chatting with a friend & reading the newspaper.

>

>This is the way it was for me. You sound like you are doing great, and

>I hope it continues that way. Anita from NC

>

>

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

>Fresh flowers are the perfect way to say " I love you " .

>Shipped direct from the grower, Proflowers.com has

>arrangements from $29.95 plus S & H.

>Click here: http://offers./click/216/0

>

>

[Guest guest]

Gordon,

Thank you for your reply !!

Jack & Kathy

Re: No Subject

>Jack:

>I think that the felling you get before a episode of V.T. is different for

>evrybody, I get a funny feeling in my chest, and when I get it I have

>learned that I need to stop what I'm doing and just rest, because if I go

on

>I am going to go into V.T and get zapped. I have learned what this feeling

>is from going through it and getting zapped (three times) but it is real

>hard to describe what it feels like, and it will probably be different in

>your case. But I do get a warning before it happens, and I also take trips

>and pull a trailer, so if you start to feel strange, or unusual I would

>suggest stopping for awhile and resting. It usually only takes about an

hour

>or two for it to pass for me. Best of luck and enjoy your trip.

>

>Gordon H. Sears

>

>

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

>HOW LOW CAN YOU GO? How does a 2.9% intro APR Visa sound?

>Transfer your balances from other high rate credit cards and save!

>Learn more at: http://offers./click/204/1

>

>

[Guest guest]

Mike,

Thank you for your reply !!

Jack & Kathy

Re: No Subject

>The only warning I get before being zapped is starting to pass out.

>About the time I hit the floor, I get zapped back. I have been one step

>away from a chair, felt myself starting to pass out, and could not even

>get to the chair--passed out on the floor.

>

>But for you, Jack, certainly going 6 months without a zap is a good

>sign. I am now able to drive again (although I am too scared yet to get

>on the freeway) and go in a swimming pool - had to go 6 months without

>losing consciousness. I wish you all the best in your travels!

>

>nobody@... wrote:

>

>> ...first I would like to wish you the best of luck !!

>>

>> I,Jack, have been reading the notes from everyone and it has been very

>> usefull.

>> Thank-you to all !! This is my first time sending a note.

>> I have had my defibrillator for 6 months now and have not had a zap. I

>> am also on Cordarone and feel great. I have VT and I also have

>> another arrhythmia that causes dizzy spells. The cordarone has so far

>> taken care of both. Sometimes I even forget that I have the

>> defibrillator.

>> I still drive and plan on taking a long trip pulling a 5th wheel.

>> What I would like to know is....does anyone ever get a phyical warning

>> before they get a zap? If so, what does the warning feel like ?

>>

>> Jack & Kathy

>>

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

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

>> Fresh flowers are the perfect way to say " I love you " .

>> Shipped direct from the grower, Proflowers.com has

>> arrangements from $29.95 plus S & H.

>> Click here: http://offers./click/216/0

>>

>>

[Guest guest]

G'day Jack,

I can " sense " when my defib is charging up - sometimes I have a bright

flash before my eyes but generally its just a electric feel. I know that's

no really clear and the first two zaps I didn't realise what the feeling

was but I kinda worked it out after that.

All the Best

Danny

----------

> From: nobody@...

> egroups

> Subject: No Subject

> Date: Tuesday, 9 February 1999 1:16

>

> ...first I would like to wish you the best of luck !!

>

> I,Jack, have been reading the notes from everyone and it has been very

usefull.

> Thank-you to all !! This is my first time sending a note.

> I have had my defibrillator for 6 months now and have not had a zap. I am

also on Cordarone and feel great. I have VT and I also have another

arrhythmia that causes dizzy spells. The cordarone has so far taken care of

both. Sometimes I even forget that I have the defibrillator.

> I still drive and plan on taking a long trip pulling a 5th wheel. What I

would like to know is....does anyone ever get a phyical warning before they

get a zap? If so, what does the warning feel like ?

>

> Jack & Kathy

>

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

> Fresh flowers are the perfect way to say " I love you " .

> Shipped direct from the grower, Proflowers.com has

> arrangements from $29.95 plus S & H.

> Click here: http://offers./click/216/0

>

>

[Guest guest]

Danny,

Thanks for your reply....Questions?.....How do you feel afterwards? Do you

pass out when you get a zap? Do you drive?

Jack

No Subject

>> Date: Tuesday, 9 February 1999 1:16

>>

>> ...first I would like to wish you the best of luck !!

>>

>> I,Jack, have been reading the notes from everyone and it has been very

>usefull.

>> Thank-you to all !! This is my first time sending a note.

>> I have had my defibrillator for 6 months now and have not had a zap. I am

>also on Cordarone and feel great. I have VT and I also have another

>arrhythmia that causes dizzy spells. The cordarone has so far taken care of

>both. Sometimes I even forget that I have the defibrillator.

>> I still drive and plan on taking a long trip pulling a 5th wheel. What I

>would like to know is....does anyone ever get a phyical warning before they

>get a zap? If so, what does the warning feel like ?

>>

>> Jack & Kathy

>>

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

>> Fresh flowers are the perfect way to say " I love you " .

>> Shipped direct from the grower, Proflowers.com has

>> arrangements from $29.95 plus S & H.

>> Click here: http://offers./click/216/0

>>

>>

[Guest guest]

G'day Jack,

I only ever passed out during my EP study. The very first time I had a VT

attack my heart rate was up to 300 bpm and above 260 for about 30 mins but

I was conscious the whole time. During all my ICD shocks I have stayed

conscious.

When the ICD was first put in I was told not to drive for 6 months and then

not for 6 months if I got a shock. I got 5 shocks in about 10 days

(incorrect settings) so didn't drive for about 6 months after that. That

was in Nov 97, since about April 97 I have driven with absolutely no

problems and feel confident to do so.

All the Best

Danny

----------

> From: Kathy Miling <car00468@...>

> egroups

> Subject: Re: No Subject

> Date: Thursday, 11 February 1999 12:28

>

> Danny,

> Thanks for your reply....Questions?.....How do you feel afterwards? Do

you

> pass out when you get a zap? Do you drive?

> Jack

> No Subject

> >> Date: Tuesday, 9 February 1999 1:16

> >>

> >> ...first I would like to wish you the best of luck !!

> >>

> >> I,Jack, have been reading the notes from everyone and it has been very

> >usefull.

> >> Thank-you to all !! This is my first time sending a note.

> >> I have had my defibrillator for 6 months now and have not had a zap. I

am

> >also on Cordarone and feel great. I have VT and I also have another

> >arrhythmia that causes dizzy spells. The cordarone has so far taken care

of

> >both. Sometimes I even forget that I have the defibrillator.

> >> I still drive and plan on taking a long trip pulling a 5th wheel.

What I

> >would like to know is....does anyone ever get a phyical warning before

they

> >get a zap? If so, what does the warning feel like ?

> >>

> >> Jack & Kathy

> >>

> >>

------------------------------------------------------------------------

> >> Fresh flowers are the perfect way to say " I love you " .

> >> Shipped direct from the grower, Proflowers.com has

> >> arrangements from $29.95 plus S & H.

> >> Click here: http://offers./click/216/0

> >>

> >>

[Guest guest]

G'day Jack,

I only ever passed out during my EP study. The very first time I had a VT

attack my heart rate was up to 300 bpm and above 260 for about 30 mins but

I was conscious the whole time. During all my ICD shocks I have stayed

conscious.

When the ICD was first put in I was told not to drive for 6 months and then

not for 6 months if I got a shock. I got 5 shocks in about 10 days

(incorrect settings) so didn't drive for about 6 months after that. That

was in Nov 97, since about April 97 I have driven with absolutely no

problems and feel confident to do so.

All the Best

Danny

----------

> From: Kathy Miling <car00468@...>

> egroups

> Subject: Re: No Subject

> Date: Thursday, 11 February 1999 12:28

>

> Danny,

> Thanks for your reply....Questions?.....How do you feel afterwards? Do

you

> pass out when you get a zap? Do you drive?

> Jack

> No Subject

> >> Date: Tuesday, 9 February 1999 1:16

> >>

> >> ...first I would like to wish you the best of luck !!

> >>

> >> I,Jack, have been reading the notes from everyone and it has been very

> >usefull.

> >> Thank-you to all !! This is my first time sending a note.

> >> I have had my defibrillator for 6 months now and have not had a zap. I

am

> >also on Cordarone and feel great. I have VT and I also have another

> >arrhythmia that causes dizzy spells. The cordarone has so far taken care

of

> >both. Sometimes I even forget that I have the defibrillator.

> >> I still drive and plan on taking a long trip pulling a 5th wheel.

What I

> >would like to know is....does anyone ever get a phyical warning before

they

> >get a zap? If so, what does the warning feel like ?

> >>

> >> Jack & Kathy

> >>

> >>

------------------------------------------------------------------------

> >> Fresh flowers are the perfect way to say " I love you " .

> >> Shipped direct from the grower, Proflowers.com has

> >> arrangements from $29.95 plus S & H.

> >> Click here: http://offers./click/216/0

> >>

> >>

[Guest guest]

Hi..What kind of side effects...will be more than happy to supply links,

information and personal comments. LeeRoush@....

------------------------------------------------------------------------

[Guest guest]

He has experienced involuntary movements in his arms and legs that

interfere with his mobility--very stressful. It is suppressed with a

drug. It has happened since he had cardiac arrest while hospitalized.

That was where he received his ICD--at Methodist North in Memphis. We

wonder if it could be related to his implant and perhaps correctable.

------------------------------------------------------------------------

[Guest guest]

Dear ?. I work in a EP Lab and implant all kinds of devices, what are your

questions. Makal Morton Plant EP Lab

------------------------------------------------------------------------

[Guest guest]

Hi, I have many questions & seem not able to get any answers, maybe you

can help me out. My step dad had a Mechanical valve replacement on

Jan.22, 1999, He is still in the hospital, they are going to shock hm

tomorrow again to see if they can get his heart regulated. We were told

first that he would have to wait for 6 weeks or maybe 6 months before

they shocked him again. They say they don know if the zap will work or

not. There have been people who have had Heart Replacement and went

home already. I personally think we are getting a run around, no one

seems to agee with anyone, his heart doc ,his lung doctor, no one know

what the other one is thinkig, tey are now speaking about a paemaker,

but we think that is out of the question, they are all of a different

opinion. Have you heard of anythin like this. hey keep changing his

medicines. They told us he needed the operation in order to live, but he

is in worse shape then before he had this operation. Any light you can

shed abot him being shocked so soon will be appreciated . thanks so

much, Vic

------------------------------------------------------------------------

[Guest guest]

Patsy,

Your question re your fiance is something I have not heard before, but I am

certainly no doctor, and have only had the ICD for 7 months. Did you notice

the movements after the heart attack, or after the ICD implant? Has he been

shocked? Can anyone help with this?

Did you try telephoning the maker of the ICD? I know that Guidant has a hot

line for questions. You can get this number from his EP physician--perhaps

the maker will have an answer. Your fiance should also have a card with this

number on it, and the ID of the device implanted.

At the moment this is about all I can think of...but don't give up...keep

pressing those physicians for an answer. Prayers are with you both. Lee

------------------------------------------------------------------------

[Guest guest]

Hi Patsy,

After some web research, I found that Ventritex (Sunneyvale, CA) merged with

St. Jude Medical, Inc. I suppose you could get a phone number for Ventritex

out in CA, but darn it, you SHOULD have a medical ID card that is in your

fiance's wallet at all times. The first one is hand written (at least by

Guidant---the mfr of my ICD) and then they send one to you all printed up with

the model, the leads, etc. In addition to this, it would be well for you to

find out how the device is programmed; i.e., at what heart rate will it

shock...and at what rate does it pace (if there is also a pacemaker.)

Someone has been lax, here. Please let me know how you make out. How do you

others feel out there about this???? Lee LeeRoush@...

------------------------------------------------------------------------

[Guest guest]

My friend and fiance recived an ICD in November. He was in the hospital

when he suffered cardiac arrest. Since then he has involuntary

movements in his arms and legs that interfere with his mobility. It is

controlled so far with a drug. Parkinson has been ruled out. Could

this be related to the ICD? He says he has had no sensation of being

shocked. Any ideas? Thanks-Patsy

------------------------------------------------------------------------

[Guest guest]

Lee,

It is hard to tell what followed what since the implant quickly followed

the heart episode. However, we received no card or etc. and when he had

another surgery, we waited 45 minutes to locate the representative.

Fortunately, the surgery was planned and not emergency. The company

isVentritex or AngstromII-confusing. Do you know of this company?

Thanks for your time.

Patsy

------------------------------------------------------------------------

[Guest guest]

Patsy -- I read your e-mail and Lee's response. This is very puzzling

to me. I've never heard of the company you mentioned. We have an EP

tech on this list ( Makal) -- maybe if he reads this, he may have an

answer. I think his e-mail address is JDShock@.... I hope you get

some answers soon. Anita from NC

------------------------------------------------------------------------

[Guest guest]

Patsy,

I've been following ur msgs over the past few days and thought I might be

able to provide a little info based on my own experience after having

received a Ventritex ICD 9/98. First off, based on ur msg it appears

Ventritex is the name of the company that produces your fiancee's ICD. The

company is located in Silicone Valley there on the South end of the San

Francisco Bay area. In San I believe. The Ventritex company was

purchased last year by Saint Jude Medical as part of that outfit's efforts

to strengthen its cardiac related lines of business.

While I received a sort of " ICD User's Guide " fm the Ventritex tech rep the

day I received my ICD and with it my temp ICD recipient's ID card, I had to

call the company with a follow-up request after waiting several months

without receiving my official ID card . As I recall, Ventritex turned that

request around quickly, and I received my official ICD recipient's ID card

less than a week later. By the way, Ventritex's toll free phone number is

(800) 733-3455 and St. Jude's web page is http://www.sjm.com/

As everyone else has said, the involuntary movement of your fiancee's arms &

legs are symptom's I'm unfamiliar with and have not heard anyone else

mention which makes me question it's relationship to his new ICD. I'm

assuming the implant site is just to the left and just above his left breast

vs. an abdominal implant , correct? Regardless of the ICD's location, I

can't see any relationship to the ICD itself; and the surgery, fm a

non-medical layman's perspective, is also rather straight fwd &

uncomplicated.

In one of ur msgs you mentioned his not having had any sensation of being

shocked and asking about that. First of all, please understand I haven't

been zapped except by my doc, on purpose, and while I was pretty well out of

it. That said, most folks I've talked w/and corresponded with definitely do

know when they get zapped. However, there really shouldn't be any question

since the tech folks can read out your fiancee's ICD with a computer and

scanning device that look a lot like a computer mouse. One of the many

things his ICD reports back to the interrogating computer is if it has

issued " therapy " (a fancy, non-tech way of saying it's given the wearer a

zap). If it has, it provides all sorts of additional info for them like

when it happened, how lg a zap was used, an EKG rpt before and after the

event, etc. This report will cover multiple zaps over a large period of

time, so as you can see, the doc's should have all sorts of info available

telling them exactly what his ICD is/is not doing as a way of ruling out

contributing factors to his condition and their ultimate diagnosis. Having

your ICD down load what it & you have been up to is why I/we need to see our

EP doc's every 90 days.

Patsy, I hope some of all this may help you in handling what's going on.

Tony

> ----------

> From: Patsy

> Reply egroups

> Sent: Friday, February 19, 1999 08:14

> egroups

> Subject: Re: No Subject

>

> Lee,

> It is hard to tell what followed what since the implant quickly followed

> the heart episode. However, we received no card or etc. and when he had

> another surgery, we waited 45 minutes to locate the representative.

> Fortunately, the surgery was planned and not emergency. The company

> isVentritex or AngstromII-confusing. Do you know of this company?

> Thanks for your time.

> Patsy

>

>

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

>

[Guest guest]

Tony, Lee, et al-thank you, thank you for the information-God's grace

comes in all ways.

Patsy

------------------------------------------------------------------------

[Guest guest]

,

I feel palpitations all of the time. It is a little embarrassing to get

your ICD downloaded and have nothing recorded when you are sure it was

pacing or you had rapid rhythms. The tech's told me everyone is the same,

and play mind games with themselves about what is going on. We feel the

same way so I hope for my sake you're not crazy. I do record all of the

things I think are out of the ordinary on my health journal.

Take care and welcome to the club,

Pete E

www.healthyheartmarket.com

No Subject

Hello again, I somehow clipped off the last bit of my note. The gist of my

question is, can the pulsing I feel just be from the rate adaptive pacer or

is this just between my ears? I've only had the i.c.d. for 2 days so

everything is new to me.

Thank You

------------------------------------------------------------------------

[Guest guest]

Don't forget the medical alert necklace. And if all you have said is true,

start looking for a new doctor.

Pete E

Re: No Subject

Hi Patsy,

After some web research, I found that Ventritex (Sunneyvale, CA) merged with

St. Jude Medical, Inc. I suppose you could get a phone number for Ventritex

out in CA, but darn it, you SHOULD have a medical ID card that is in your

fiance's wallet at all times. The first one is hand written (at least by

Guidant---the mfr of my ICD) and then they send one to you all printed up

with

the model, the leads, etc. In addition to this, it would be well for you to

find out how the device is programmed; i.e., at what heart rate will it

shock...and at what rate does it pace (if there is also a pacemaker.)

Someone has been lax, here. Please let me know how you make out. How do

you

others feel out there about this???? Lee LeeRoush@...

------------------------------------------------------------------------

[Guest guest]

I also have a Ventritex ICD, and I was given an ID card and a little

booklet at the time of my implant (Feb. 98). Someone from the company

was at one of my EP appointments when they fixed some minor issue with

the device.

My only experience is that I received an ICD after having a cardiac

arrest, but I wonder if the involuntary leg movements could be from the

cardiac arrest. Was your fiance without oxygen for a period of time?

For example, I have some memory problems, but the docs relate them to

the lack of oxygen to my brain for a period following my cardiac arrest

before CPR was administered.

Best of luck in resolving this problem.

>

>

> -

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

>

>