Dear everybody

I am from India I received my icd in October 2007.

I had a heart attack in 1980 and a repeat attack in 1987. In 2000  I
had my first VT (severe one @ heart rate of 220 bpm) reverted by
electric shock. I ignored the episode until I started getting repeated
episodes, diagnosed as drug resistant repetitive V tack and was
recommended ICD. In October 2007 I received the ICD. The condition was
uneventful till July 2007 when suddenly I started getting V tach on
three successive days. Two episodes were controlled by pacing and I
was shocked on three occasions. Though the shock was destabilising,
the first one gave the comfort feeling that the device is doing fine
and saved my life. But subsequent shocks,believe me, shattered me
completely. Subsequently there had been no episodes.

That is what it is.

Now can somebody can react on my feelings below

1 a fear if the device is malfunctioning how to know ?
2 what if an episode happens during a drive ?
3 what if there is a shock when you are alone ?

shunmugam k

hi bruce, i was lucky in that i was in hospital after a heart attack when i
first went into VT and the second time we were driving past my GP's surgery,
having survived both i feel a lot more confident with the ICD which i have had
for three years now.
its good to know the ICD is there doing its job.
all the best , dave
>
> From: Bruce
> Date: 2008/11/18 Tue PM 06:27:50 GMT
> To: icdsupport@yahoogroups.com
> Subject: [icdsupport] lucky new icd patient
>
> hi there,i was recently taking part in a clinical trial regarding heart
> failure and insulin resistance,after doing a exercise test which was
> regarded normal,the cardiologist with me asked if i was ok,i said yes
> then seconds later felt this really bad fluttering feeling,the
> cardiologist asked again if i was ok,i said no,he and a cardiac nurse
> put me on a bed,where he informed me that as i was hooked up to the ecg
> machine it is showing that my heart  had gone into VT,i was shocked by
> defib there and then by the cardiologist to try and get rhytm back to
> normal,this didnt work,i then arrested,when i came to i was in ccu
> after being shocked again,i was later implanted with icd,this was 8
> weeks ago,the rest of my medical history is that i had a heart attack
> aged 30,a heart bypass aged 30,and a further bypass operation aged
> 33,the heart attack left me with heart failure and angina,i have also
> have familial hypercholesterolemia,so thats my lucky story being in a
> room with a cardiologist,a cadiac nurse and a defibrillator when i had
> my cardiac arrest,now i have my own icd defib,how do you all feel about
> having a machine inside you,what are your thoughts on your outlook in
> life since you recieved your icd,do you have mortality issues regarding
> it.look forward to your replys regards Bruce.
>
>
>

-----------------------------------------
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I have an ICD as a result of a cardiac arrest I had while driving my
kids to the shopping mall. Fortunaty I crashed the car outside the
house of a Policeman, trained in CPR. I was shocked by the paramedic
who arrived in a few minutes. I have no previous heart history and no
cause yet diagnosed for the VF.

I feel odd about the whole thing. I blacked out when the arrest
happened and have no memory of about a week, just before it happened
to time in ICU and CCU. My family on the other hand is very
traumatised, especially my two boys who were in the car with me at the
time.

I'm very glad I have the ICD, as obviously there is a real risk it
will happen again, and I couldn't get so lucky twice. I was prepared
for a fight with the hospital to get one fitted, but there was no
problem about getting it.

My main concerns are getting back to work, being able to drive again
and most importantly, getting a diagnosis of the underlying cause, so
that my boys can be screened for it.

hi there,i was recently taking part in a clinical trial regarding heart
failure and insulin resistance,after doing a exercise test which was
regarded normal,the cardiologist with me asked if i was ok,i said yes
then seconds later felt this really bad fluttering feeling,the
cardiologist asked again if i was ok,i said no,he and a cardiac nurse
put me on a bed,where he informed me that as i was hooked up to the ecg
machine it is showing that my heart  had gone into VT,i was shocked by
defib there and then by the cardiologist to try and get rhytm back to
normal,this didnt work,i then arrested,when i came to i was in ccu
after being shocked again,i was later implanted with icd,this was 8
weeks ago,the rest of my medical history is that i had a heart attack
aged 30,a heart bypass aged 30,and a further bypass operation aged
33,the heart attack left me with heart failure and angina,i have also
have familial hypercholesterolemia,so thats my lucky story being in a
room with a cardiologist,a cadiac nurse and a defibrillator when i had
my cardiac arrest,now i have my own icd defib,how do you all feel about
having a machine inside you,what are your thoughts on your outlook in
life since you recieved your icd,do you have mortality issues regarding
it.look forward to your replys regards Bruce.

Welcome Bruce and other new members to the board!!
We have recently had personnel changes but would like to reassure you
that Jenni and I are always here, so do not hesitate to contact us if
you have any specific concerns or require any booklets at anytime,
heather@...

Watch out for our monthly e-bulletin which will keep you updated on
all activities and the latest medical information that could be of
interest to you.

We shall look forward to reading your postings!

Heather

heatherpeebles87@...

Hi michelle
Firstly can i take this opportunity to welcome you to the club (nt a
club you want to join lol). I remember when i got mine implanted 4
th july 2008. never been more nervous in my life... i remember
praying throughout the op yet at the same time there was this little
thing in me which actually wanted me to have this thing. perhaps its
the feling of being unique compared to the rest of the normal
people.. since that day i can tell you ive had 11 appropriate shocks
in total. certainly not a pleasant feelin especially if you have
more than 2 at time. But hey all is not bad considering its like a
guardian angel. The ICD tries to correct ur abnormal heartbeat a few
times prior to it shocking you.
for the first week or so obviously it uncomfortable having an icd
especially when going to bed but as time goes by you wont be able to
tell you have one unless if it shcks you. but dont worry im a
natural born disaster anywway.... im prone to eing unlcky so im juat
an exception. hope this helps lol and goog luck. im sure you`ll be
fine

> Hi Michelle
I had an ICD implanted almost three years ago, it has paced my heart quite a few
times to stop VT and most times I have been unaware of it.There was some
discomfort when I first got it but now I don't really think about it, before it
was fitted I had two VT episodes both touch and go, so quite scary.
  So for my peace of mind its great to have an ICD.
As yet I have not had a big shock and hopefully never will.
Hope thats some help.
All the best
Dave.
> From: Michelle
> Date: 2008/10/02 Thu AM 02:58:12 BST
> To: icdsupport@yahoogroups.com
> Subject: [icdsupport] New Member
>
> Hi Everyone,
>
> I am so excited that this message board is here.  I was starting to
> feel a little overwhelmed.  I am scheduled in a couple of weeks for
> my ICD.  I have ventricular tachycardia which is not treatable
> through ablation.  I have went through ablation twice and the last
> time I had so many electrical anomalies that they could not do the
> procedure.  So they tell me they have never seen someone with my
> particular electrical problem, but that they have read about it.
> Anyway, my specialist at UCLA has decided after talking with his
> colleagues throughout the nation that I am a good candidate for the
> ICD.   I am prepared to get the devise.  I am mostly worried about
> getting shocked and it not being warranted.   I have some questions
> about the ICD from a patient perspective.
>
> Does the ICD fill uncomfortable?
> Do you ever get shocked just because or is it only when it detects
> something is wrong?
> Do you feel better since you got the ICD?
>
> I think that will start me off.  I really appreciate anyone that
> replies.
>
> Thank you,
>
> Michelle
>
>
>
>

-----------------------------------------
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Virus-checked using McAfee(R) Software and scanned for spam

----- Original Message -----

From: Michell

To: icdsupport@yahoogroups.com

Sent: Thursday, October 02, 2008 2:58 AM

Subject: [icdsupport] New Member

Hi Everyone,

I am so excited that this message board is here. I was starting to
feel a little overwhelmed. I am scheduled in a couple of weeks for
my ICD. I have ventricular tachycardia which is not treatable
through ablation. I have went through ablation twice and the last
time I had so many electrical anomalies that they could not do the
procedure. So they tell me they have never seen someone with my
particular electrical problem, but that they have read about it.
Anyway, my specialist at UCLA has decided after talking with his
colleagues throughout the nation that I am a good candidate for the
ICD. I am prepared to get the devise. I am mostly worried about
getting shocked and it not being warranted. I have some questions
about the ICD from a patient perspective.

Does the ICD fill uncomfortable?
Do you ever get shocked just because or is it only when it detects
something is wrong?
Do you feel better since you got the ICD?

I think that will start me off. I really appreciate anyone that
replies.

Thank you,

Michelle

Hi Michelle,

I've had my ICD a month now, so still a newbie. I have it because I
had a SCD/VF arrest. The procedure was not too bad, the worst bit was
the local anesthetic injection. The pocket hurt like hell for a
couple of days after, so line up some decent painkillers.

It certainly feels a little odd having this thing inside me, but it
isn't causing me any problems. My only real issues are that the beta
blocker I am on is making me tired and I am not allowed to drive
until I am shock free for 6 months (UK Law)

I haven't been shocked yet, but since it took me 45 years to have my
first VF, no-one can tell me when the next one will come along.

My ICD is programmed to give me a defibrillating shock if my heart
rate exceeds 200bpm, which would be indicative of a VF event. It will
also pace me if it drops below 40bpm. Your settings will be different
to suit your condition. Yours will be set to perform cardioversion
which will time the shock to the right point in the heartbeat to
correct the tachycardia.

I'm very pleased to have the little thing watching over me, I feel much better
for having my ICD. I don't thik I would
sleep again without it. When I was in hospital and they were still
deciding what was wrong and what to do, they said I could go home in
between tests. I refused and stayed in hospital so I was close to an
AED.

Good luck


Mark


--- In icdsupport@yahoogroups.com, Michelle wrote:
>
> Hi Everyone,
>
> I am so excited that this message board is here.  I was starting to
> feel a little overwhelmed.  I am scheduled in a couple of weeks for
> my ICD.  I have ventricular tachycardia which is not treatable
> through ablation.  I have went through ablation twice and the last
> time I had so many electrical anomalies that they could not do the
> procedure.  So they tell me they have never seen someone with my
> particular electrical problem, but that they have read about it.
> Anyway, my specialist at UCLA has decided after talking with his
> colleagues throughout the nation that I am a good candidate for the
> ICD.   I am prepared to get the devise.  I am mostly worried about
> getting shocked and it not being warranted.   I have some questions
> about the ICD from a patient perspective.
>
> Does the ICD fill uncomfortable?
> Do you ever get shocked just because or is it only when it detects
> something is wrong?
> Do you feel better since you got the ICD?
>
> I think that will start me off.  I really appreciate anyone that
> replies.
>
> Thank you,
>
> Michelle
>

Hi Everyone,

I am so excited that this message board is here.  I was starting to
feel a little overwhelmed.  I am scheduled in a couple of weeks for
my ICD.  I have ventricular tachycardia which is not treatable
through ablation.  I have went through ablation twice and the last
time I had so many electrical anomalies that they could not do the
procedure.  So they tell me they have never seen someone with my
particular electrical problem, but that they have read about it.
Anyway, my specialist at UCLA has decided after talking with his
colleagues throughout the nation that I am a good candidate for the
ICD.   I am prepared to get the devise.  I am mostly worried about
getting shocked and it not being warranted.   I have some questions
about the ICD from a patient perspective.

Does the ICD fill uncomfortable?
Do you ever get shocked just because or is it only when it detects
something is wrong?
Do you feel better since you got the ICD?

I think that will start me off.  I really appreciate anyone that
replies.

Thank you,

Michelle

Hello Everyone,

Just to let you know that our server is going to be down over the weekend. I will still be moderating all messages that are posted, but please be patient as it may take a little longer than usual.

Thank you for your understanding. Hope you have a nice weekend – shame it's not another Bank Holiday.

Francesca

We regularly receive enquiries regarding the use of mobile telephones
and pacemakers, and the latest has been on the use of The Nintendo Wii.

Following investigation we can report the following...

The advice received from the device manufacturing companies is that
patients with pacemakers are OK to use the Wii but are advised to keep
the pacemaker 9 inches away from the radio source.

Hope this helps!

Best wishes

Karen
A-A Helpline

Hi
--- In icdsupport@yahoogroups.com, Sam wrote:
>
> Hi Debbi,
> Hope you have a good trip to US & Canada.I run an ICD support group
and is collecting travel insurance company that are offering ICD owners
a good package at a reasonable cost.I am also aware that getting
insurance cover is like winning the lottery,one person may be successful
and another get decline.Could you let me have the contact details of the
company you used?
> Thank you
> Sam.
> ----- Original Message -----
> From: Debbi
> To: icdsupport@yahoogroups.com
> Sent: Wednesday, June 04, 2008 8:32 PM
> Subject: [icdsupport] Re: Travel Insurance
>
>
> Hi
>
> I'm off to the US & Canada in August and was turned down by a number
of
> travel insurance companies even though they stated they offered
> competitive premiums for people with pre-existing medical conditions.
> These included AXA, Norwich Union, Travelbility and the Post Office.
>
> In the end I got a fair rate from Citybond Suretravel plus a good
quote
> for a yearly policy for travel to Europe only.
>
> Debbie
>
> --- In icdsupport@yahoogroups.com, Karen wrote:
> >
> > Hello Lee
> >
> > We haven't heard of any such restrictions but it would be
interesting
> > to hear whether anyone else has been given similar information.
> > Perhaps it's just these particular insurers?
> >
> > Best wishes
> >
> > Karen
> > A-A Helpline
> >
>

Hello Everyone

It may be June, but October will be upon us soon -  which means plans
for the Heart Rhythm Congress are moving on apace!  We will be holding
a Patients' Day on 20 October and hope that many of you will be able to
attend.  We would welcome ideas on the topics you would like included -
email heartrhythm@... - and although we can't promise to cover
them all, all suggestions would be gratefully received.  For more
information on the Congress visit www.heartrhythmcongress.com

Many thanks.

Karen
A-A Helpline

----- Original Message -----

From: Debbi

To: icdsupport@yahoogroups.com

Sent: Wednesday, June 04, 2008 8:32 PM

Subject: [icdsupport] Re: Travel Insurance

Hi

I'm off to the US & Canada in August and was turned down by a number of
travel insurance companies even though they stated they offered
competitive premiums for people with pre-existing medical conditions.
These included AXA, Norwich Union, Travelbility and the Post Office.

In the end I got a fair rate from Citybond Suretravel plus a good quote
for a yearly policy for travel to Europe only.

Debbie

--- In icdsupport@yahoogroups.com, Karen wrote:
>
> Hello Lee
>
> We haven't heard of any such restrictions but it would be interesting
> to hear whether anyone else has been given similar information.
> Perhaps it's just these particular insurers?
>
> Best wishes
>
> Karen
> A-A Helpline
>

Hi

I'm off to the US & Canada in August and was turned down by a number of
travel insurance companies even though they stated they offered
competitive premiums for people with pre-existing medical conditions.
These included AXA, Norwich Union, Travelbility and the Post Office.

In the end I got a fair rate from Citybond Suretravel plus a good quote
for a yearly policy for travel to Europe only.

Debbie

--- In icdsupport@yahoogroups.com, Karen wrote:
>
> Hello Lee
>
> We haven't heard of any such restrictions but it would be interesting
> to hear whether anyone else has been given similar information.
> Perhaps it's just these particular insurers?
>
> Best wishes
>
> Karen
> A-A Helpline
>

Hi Julie

Thanks for the info. Do you know if they have a website address?

Debbie

The article is really encouraging, especially as I only had my ICD
fitted on the 8th April and am experiencing the same initial  feeling
this lady had psychologically and emotionally right now.

--- In icdsupport@yahoogroups.com, Karen wrote:
>
> If you haven't already read this article in the Guardian, please have
> a look as there is a happy ending!
>
> Karen
> A-A Helpline
>
>
> A machine keeps me alive
>
> Tina Amiss
> Saturday May 17, 2008
>
> Guardian
>
> One evening in 1994, I stopped breathing while watching TV.
> Fortunately my husband Pete, a firefighter, had not gone to rugby
> training that evening and resuscitated me. It was a very frightening
> experience. After a battery of tests I was told I had cardiomyopathy,
> an inherited heart muscle disorder. There are various types but mine,
> which is called ARVC (arrhythmogenic right ventricular
> cardiomyopathy), meant that damaged heart muscle was gradually
> replaced by scar tissue and fat. A recognised cause of sudden death
> in the young, ARVC also causes weakening of the heart's pumping
> action.
>
> I had been very fit and healthy throughout my 31 years - or so I
> thought - but I began experiencing palpitations, light-headedness and
> extreme tiredness. Initially, I was treated with medication and told
> not to take part in vigorous sport. Gradually I improved, became
> pretty much symptom-free, and was able to come off my medication and
> resume a normal life. I went on to have two children. Apart from
> regular checkups, I almost forgot I had a problem.
>
> Then in 2002, I suffered a cardiac arrest in my sleep. My breathing
> became very laboured and noisy, and woke Pete. Once again he
> resuscitated me. I was now considered at high risk of sudden death
> and told I should have an internal cardiac defibrillator (ICD)
> implanted in my chest wall. This is a specialised pacemaker that not
> only senses and corrects my irregular heartbeat, but also shocks my
> heart if it develops a life-threatening rhythm. It has two main
> components: the pulse generator (like a small computer that runs on a
> battery) and leads that are connected to the heart. It monitors all
> the time for an abnormal rhythm. If one is sensed, it determines what
> type of treatment is needed, either pacing my heart or giving it a
> controlled electric shock. Pacing feels like a fluttering in the
> chest; a shock is like a strong thump.
>
> The procedure was done under a local anaesthetic with sedation. I
> went home the following day, and for the first week had to take care
> not to lift my arms above shoulder height to allow the leads to
> imbed. The scar is very small and neat, and I have a small bump where
> the ICD sits beneath the skin near the collarbone.
>
> Physically, my recovery was unremarkable. However, psychologically
> and emotionally it was much harder. I became very aware of my
> heartbeat and lived in fear of my device shocking me. I felt very
> unwell, was unable to sleep, and thought life would never be normal
> again. I knew I should be grateful for the device and that it should
> give me reassurance, but that was a long time coming.
>
> A few weeks after the ICD was fitted, I received my first shock. I
> was walking along the road feeling fine and suddenly came over very
> dizzy. As the device fired, I felt as if I'd been kicked in the chest
> by a horse. And while it wasn't what I'd class as painful, it was
> unpleasant and upsetting. I have had three more shocks since but with
> these I have lost consciousness and have therefore not felt them. For
> me losing consciousness is more scary than feeling the shock.
>
> I am now back on medication and have not had any shocks for two
> years. I have checkups every few months and know that I will have to
> have the pulse generator replaced at some point as the battery life
> is normally four to eight years.
>
> My ICD has built-in features that protect it from interference from
> most electrical appliances. However, it is sensitive to strong
> electrical or magnetic fields. Therefore I hold my mobile phone on
> the opposite side of my body to the ICD and do not linger in shop
> doorways where they have anti-theft surveillance. At airports I do
> not go through the security archway or have the handheld wand used on
> me (I have an ID card that I show to security staff).
>
> I lead a full and busy life, and while I have been advised not to
> take part in competitive or combat sports, I continue going to the
> gym, skiing and travelling. I recently became a trustee of the
> Cardiomyopathy Association. The biggest headache for me and my family
> is that after I've had a shock, I'm not allowed to drive for a
> minimum of six months. I have now learned to live in harmony with my
> ICD and not in fear of it. It literally saves my life and I am very
> lucky to have it.
>

If you haven't already read this article in the Guardian, please have
a look as there is a happy ending!

Karen
A-A Helpline


A machine keeps me alive

Tina Amiss
Saturday May 17, 2008

Guardian

One evening in 1994, I stopped breathing while watching TV.
Fortunately my husband Pete, a firefighter, had not gone to rugby
training that evening and resuscitated me. It was a very frightening
experience. After a battery of tests I was told I had cardiomyopathy,
an inherited heart muscle disorder. There are various types but mine,
which is called ARVC (arrhythmogenic right ventricular
cardiomyopathy), meant that damaged heart muscle was gradually
replaced by scar tissue and fat. A recognised cause of sudden death
in the young, ARVC also causes weakening of the heart's pumping
action.

I had been very fit and healthy throughout my 31 years - or so I
thought - but I began experiencing palpitations, light-headedness and
extreme tiredness. Initially, I was treated with medication and told
not to take part in vigorous sport. Gradually I improved, became
pretty much symptom-free, and was able to come off my medication and
resume a normal life. I went on to have two children. Apart from
regular checkups, I almost forgot I had a problem.

Then in 2002, I suffered a cardiac arrest in my sleep. My breathing
became very laboured and noisy, and woke Pete. Once again he
resuscitated me. I was now considered at high risk of sudden death
and told I should have an internal cardiac defibrillator (ICD)
implanted in my chest wall. This is a specialised pacemaker that not
only senses and corrects my irregular heartbeat, but also shocks my
heart if it develops a life-threatening rhythm. It has two main
components: the pulse generator (like a small computer that runs on a
battery) and leads that are connected to the heart. It monitors all
the time for an abnormal rhythm. If one is sensed, it determines what
type of treatment is needed, either pacing my heart or giving it a
controlled electric shock. Pacing feels like a fluttering in the
chest; a shock is like a strong thump.

The procedure was done under a local anaesthetic with sedation. I
went home the following day, and for the first week had to take care
not to lift my arms above shoulder height to allow the leads to
imbed. The scar is very small and neat, and I have a small bump where
the ICD sits beneath the skin near the collarbone.

Physically, my recovery was unremarkable. However, psychologically
and emotionally it was much harder. I became very aware of my
heartbeat and lived in fear of my device shocking me. I felt very
unwell, was unable to sleep, and thought life would never be normal
again. I knew I should be grateful for the device and that it should
give me reassurance, but that was a long time coming.

A few weeks after the ICD was fitted, I received my first shock. I
was walking along the road feeling fine and suddenly came over very
dizzy. As the device fired, I felt as if I'd been kicked in the chest
by a horse. And while it wasn't what I'd class as painful, it was
unpleasant and upsetting. I have had three more shocks since but with
these I have lost consciousness and have therefore not felt them. For
me losing consciousness is more scary than feeling the shock.

I am now back on medication and have not had any shocks for two
years. I have checkups every few months and know that I will have to
have the pulse generator replaced at some point as the battery life
is normally four to eight years.

My ICD has built-in features that protect it from interference from
most electrical appliances. However, it is sensitive to strong
electrical or magnetic fields. Therefore I hold my mobile phone on
the opposite side of my body to the ICD and do not linger in shop
doorways where they have anti-theft surveillance. At airports I do
not go through the security archway or have the handheld wand used on
me (I have an ID card that I show to security staff).

I lead a full and busy life, and while I have been advised not to
take part in competitive or combat sports, I continue going to the
gym, skiing and travelling. I recently became a trustee of the
Cardiomyopathy Association. The biggest headache for me and my family
is that after I've had a shock, I'm not allowed to drive for a
minimum of six months. I have now learned to live in harmony with my
ICD and not in fear of it. It literally saves my life and I am very
lucky to have it.

Greetings Julie

I hope you enjoy the Regional meeting - sorry I haven't replied to
your query earlier - have been away. I'm afraid I do not know of
anyone else  planning to attend, but you could ask at the A-A
reception desk on the day if they know anyone there you might make
yourself known to.

Best wishes

Bryan

Hello Lee

We haven't heard of any such restrictions but it would be interesting
to hear whether anyone else has been given similar information.
Perhaps it's just these particular insurers?

Best wishes

Karen
A-A Helpline