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

From: Jo

To: icdsupport@yahoogroups.com

Sent: Friday, October 09, 2009 6:12 PM

Subject: [icdsupport] New member

 

Hello, I am a new member to this group. I will be getting an ICD implant sometime in October. I am have kidney failure and am on dialisys three times a week. Because of the ICD there is no chance now of getting a kidney transplant. I am an active member of the local volunteer fire department and have been doing so for the past 30 years. Being a life member of one fire company and serving with current fire company for the past 11 years. I will give up my position as driver/engineer with the fire department as I do not want to take the chance of this thing going off while driving a fire truck with other people's lives on the line. But there are other things I can do to stay active within the department.
One question remains to be answered and that is if I can keep my motorcyle. According to the booklet, it states not to lean over a running car engine. So although not leaning over a running engine, I will be sitting over a running engine on the motorcycle. So if anyone knows if that is ok to do and could offer advise that would be great. I will of course discuss this with the doctors, but thought maybe someone else may have had a similar case.

Advances in Community Defibrillation ......Tuesday 20th October 2009

COMPLETE AGENDA NOW AVAILABLE!!!

***Free of Charge - to all those who register prior to the event*** 

Hello, I am a new member to this group.  I will be getting an ICD implant
sometime in October.  I am have kidney failure and am on dialisys three times a
week.  Because of the ICD there is no chance now of getting a kidney transplant.
I am an active member of the local volunteer fire department and have been doing
so for the past 30 years.  Being a life member of one fire company and serving
with current fire company for the past 11 years.  I will give up my position as
driver/engineer with the fire department as I do not want to take the chance of
this thing going off while driving a fire truck with other people's lives on the
line.  But there are other things I can do to stay active within the department.
One question remains to be answered and that is if I can keep my motorcyle. 
According to the booklet, it states not to lean over a running car engine.  So
although not leaning over a running engine, I will be sitting over a running
engine on the motorcycle.  So if anyone knows if that is ok to do and could
offer advise that would be great.  I will of course discuss this with the
doctors, but thought maybe someone else may have had a similar case.

Hello Everyone!

I just wanted to keep you up to date on forthcoming events. The FIRST Arrhythmia
Alliance Patient Newsletter has just gone to print and should be posted to all
A-A patient members by the end of next week. This will share with you fellow
patient news, campaign updates, the most up to date publication list and
information on the Arrhythmia Alliance Patient Day being held on SUNDAY 18th
OCTOBER in  conjunction with the Heart Rhythm Congress. Booked through A-A,
tickets are 50% cheaper- just £25.00 per person. The agenda includes
presentations from leading arrhythmia medical experts and fellow arrhythmia
patients.

To reserve your place, order an agenda and registration form or to sign up for a
copy of the A-A Patient Newsletter please email me at
heather@...

I look forward to meeting many of you in October.

Best wishes

Heather

Calling all supporters…

We are campaigning to ensure pulse checks are taken during routine visits to a GP surgery, to promote timely diagnosis and treatment of heart rhythm disorders.

Arrhythmia Alliance has tabled an e-Petition on the Downing Street website.

Please take a couple of minutes to sign the petition. 

You can sign by going to http://petitions.number10.gov.uk/KnowYourPulse/ 

We need as many signatures as possible to show how important this simple health check is for people with potential heart rhythm disorders. With enough signatures the government has to respond to everyone who signs!

Please ask your colleagues, friends and family to sign the petition.

To sign the petition, go to http://petitions.number10.gov.uk/KnowYourPulse/ 

Thank you! Hope you're having a good weekend

Hi Shunmugam,

I'm afraid I am unaware of a link between ICD therapy and the cause of stroke
and considering the time interval between the two, it is unlikely that your
stroke would have been as a result of the ICD therapy you received earlier in
the year.

However, can I suggest you discuss this with your Arrhythmia Nurse/Implant
centre at your next check up? As we are not medically trained, I don't want to
rule the connection out.

It might be that the shocks you received had dislodged an undiagnosed blood
clot, however a stroke would have been likely to occur shortly after.

I hope this helps.

Kind Regards,

Ben

--- In icdsupport@yahoogroups.com, Shunmugam wrote:
>
> Hi ben
> nice to hear from you
> I had shocks on three days in july last year and stroke in  feb this year is
it possible shocks might have dislodged clot which might have triggered a stroke
?
>
> > Hi Shunmugam,
> >
> > Thank you for sharing your experience with us all.
> > I am sorry to hear that you suffered a stroke earlier this year - I trust
you have made a full recovery and are now fighting fit.
> >
> > I am a little unclear of what you mean by the 'link between therapy and
stoke'. Are you referring to your ICD therapy and possible connections with the
risk of stroke?
> >
> > How has everything been with your ICD device? Have you experienced any
further episodes of V.Tach since the events in October 2007?
> >
> > Bye for now,
> > Ben (Arrhythmia Alliance)
> >
> > --- In icdsupport@yahoogroups.com, Shunmugam wrote:
> > >
> > > i have already posted about myself earlier i received my ICD in 2007. I
had shocks on three successive days in july 2008
> > >
> > > sudDenly in Feb 2009 i had a mild stroke and was hospitalised Thanks to
timely treatment I have recovered fully. There was a lot of hesitation to
administEr clot burster (TPA) as it causes bleeding If there was internal
bleeding MRI to locat exact spot was ruled out. HOWEVER TPA WAS ADMINISTERED AND
i HD NO COMPLICATION EXEPT GUM BLEEDING DUE TO WHICH tpa WAS STOPPED. iS THERE
ANY LINK BETWEEN THERAPY AND STROKE ?
> > >
> > > SHUNMUGAM
> > >
> >
>

Hi ben
nice to hear from you
I had shocks on three days in july last year and stroke in  feb this year is it
possible shocks might have dislodged clot which might have triggered a stroke ?

> Hi Shunmugam,
>
> Thank you for sharing your experience with us all.
> I am sorry to hear that you suffered a stroke earlier this year - I trust you
have made a full recovery and are now fighting fit.
>
> I am a little unclear of what you mean by the 'link between therapy and
stoke'. Are you referring to your ICD therapy and possible connections with the
risk of stroke?
>
> How has everything been with your ICD device? Have you experienced any further
episodes of V.Tach since the events in October 2007?
>
> Bye for now,
> Ben (Arrhythmia Alliance)
>
> --- In icdsupport@yahoogroups.com, Shunmugam wrote:
> >
> > i have already posted about myself earlier i received my ICD in 2007. I had
shocks on three successive days in july 2008
> >
> > sudDenly in Feb 2009 i had a mild stroke and was hospitalised Thanks to
timely treatment I have recovered fully. There was a lot of hesitation to
administEr clot burster (TPA) as it causes bleeding If there was internal
bleeding MRI to locat exact spot was ruled out. HOWEVER TPA WAS ADMINISTERED AND
i HD NO COMPLICATION EXEPT GUM BLEEDING DUE TO WHICH tpa WAS STOPPED. iS THERE
ANY LINK BETWEEN THERAPY AND STROKE ?
> >
> > SHUNMUGAM
> >
>

Hi shunmugam,
I had a conversation with you when you first posted on this site.I am very
pleased  to hear with timely intervention you have made a full recovery from
your stroke.Welcome back,it is important to understand health issues.I had the
clot buster(Thrombolytics) drug shortly after my MI in 2005.As I recalled this
was done in the ambulance on the way to the emergency department.I understand
that it should not be administered a second time since it may be less effective.
I was made to believe that TPA , a different "clot buster" can be administered
more than once to clear the blood clot.

The standard treatment after an MI following stent insertion I believe is taking
75 mg of Aspirin/Clopidogrel daily to prevent blood clot forming around the
stents and also to prevent future heart attack,stroke and thrombosis in the
veins of the legs.

MRI scan can be used with people if the medical team are convinced of the
benefit to the individual,the device can be switch off and reprogramme after the
examination.In your case your medical team did
not think fit to use the MRI,as they have alternative and safer way in helping
you.
Kind regards
Sam.

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

From: Joh

To: icdsupport@yahoogroups.com

Sent: Thursday, July 02, 2009 5:01 PM

Subject: [icdsupport] Re: ICD and stroke

hi ben
thanks for your e-mail there are no patient groups where i live and yes
there are some in somerset but i live on dartmoor and as you know each time i
icd go off that's two years i cannot drive was once if you had a bid shock
then you could not drive but the dvla or government have said that if any
part go `s off you lose two years. want i have trouble with is what i was
told at what i can do but i have file your e-mail and will get back to you
thank you again.

john

hi ben
thanks for your e-mail there are no patient groups where i live and yes
there are some in somerset but i live on dartmoor and as you know each time i
icd go off that's two years i cannot drive was once if you had a bid shock
then  you could not drive but the dvla or government have said that if any
part go `s  off you lose two years. want i have trouble with is what i was
told at what i  can do but i have file your e-mail and will get back to you
thank you  again.

john

Hi Shunmugam,

Thank you for sharing your experience with us all.
I am sorry to hear that you suffered a stroke earlier this year - I trust you
have made a full recovery and are now fighting fit.

I am a little unclear of what you mean by the 'link between therapy and stoke'.
Are you referring to your ICD therapy and possible connections with the risk of
stroke?

How has everything been with your ICD device? Have you experienced any further
episodes of V.Tach since the events in October 2007?

Bye for now,
Ben (Arrhythmia Alliance)

--- In icdsupport@yahoogroups.com, Shunmugam wrote:
>
> i have already posted about myself earlier i received my ICD in 2007. I had
shocks on three successive days in july 2008
>
> sudDenly in Feb 2009 i had a mild stroke and was hospitalised Thanks to timely
treatment I have recovered fully. There was a lot of hesitation to administEr
clot burster (TPA) as it causes bleeding If there was internal bleeding MRI to
locat exact spot was ruled out. HOWEVER TPA WAS ADMINISTERED AND i HD NO
COMPLICATION EXEPT GUM BLEEDING DUE TO WHICH tpa WAS STOPPED. iS THERE ANY LINK
BETWEEN THERAPY AND STROKE ?
>
> SHUNMUGAM
>

Hi John,

I am sorry to hear that you feel so alone with your condition because of where
you live. If there is anything we can help you with, please do not hesitate to
contact us (01789 450787)- we offer a 24hour helpline and are always keen to
offer advice, support and information or even lending ear.

Have you tried contacting your nearest ICD patient group? I recall giving you
the contact information for the Somerset ICD group lead by two Arrhythmia
Nurses, have you considered joining them at their next meeting? This would allow
you to meet with ICD patients and discuss and problems, concerns or ideas you
may have.

If I can be of any assistance in helping establish contact with a patient group,
I would be more than happy to do so. If you would like to discuss this in
privicy, my email address is development@... or you can call 01789 450
787.

Bye for now,

Ben (Arrhythmia Alliance)


--- In icdsupport@yahoogroups.com, John wrote:
>
> i was sorry to read you been have a pit of trouble but please also to see
> you are over it i am so happy to hear from others with icd because of where
> i  live you feel like you are the only one. yes i am told as you must have
> that  strong magnet field are no good when you have icd so MRI and CAT scans
> are out i  will look up, soom papers i have to see if their is a answer to
> you last part of  your e-mail for bye be happy and keep flying the kites . .
> .  john
>

i have already posted about myself earlier i received my ICD in 2007. I had
shocks on three successive days in july 2008

sudDenly in Feb 2009 i had a mild stroke and was hospitalised Thanks to timely
treatment I have recovered fully. There was a lot of hesitation to administEr
clot burster (TPA) as it causes bleeding If there was internal bleeding MRI to
locat exact spot was ruled out. HOWEVER TPA WAS ADMINISTERED AND i HD NO
COMPLICATION EXEPT GUM BLEEDING DUE TO WHICH tpa WAS STOPPED. iS THERE ANY LINK
BETWEEN THERAPY AND STROKE ?

SHUNMUGAM

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

From: Francesc

To: icdsupport@yahoogroups.com

Sent: Sunday, June 28, 2009 10:16 PM

Subject: [icdsupport] ICD saved life of Roeselare football player Anthony Van Loo

Hope this might help reassure ICD patients... A Belgian football player had a cardiac arrest during a public game -

 

http://www.creativeservicesheerlen.com/VTMclip/

Hi Sue,

My name is Ben Fry and on behalf of Arrhythmia Alliance I would like to welcome
you to the ICD message board.
I am so pleased that you received prompt, accurate treatment following your
cardiac arrest and that you have joined this message board.

It's not uncommon for the site of the implant to feel bruised and sore for a
while after the operation; some of our members have reported it to take as long
as six weeks to fully heal.
Here at Arrhythmia Alliance we have a wide range of medical literature regarding
ICDs ranging from general 'Patient Information' to 'Exercising with an ICD' and
'Remote Monitoring'. If you would like a selection of these sending to you I
would be more than happy to do this.

Following on from what Sam has mentioned, there are a number of ICD Patient
Information groups across the UK.  If you would like some more information about
these or if I can help put you in contact with your nearest group, I would be
more than happy to do so. My email address is development@...

How have you felt following your operation?  Is there anything you are uncertain
of or do you have any concerns we can help you with?

Thank you for taking the time to share your experience with us.

Kindest Regards,

Ben


--- In icdsupport@yahoogroups.com, Sam wrote:
>
> Hi Sue,
> Welcome and thank you for sharing your experience with the group.It does take
time to get us to the device both physically and psychologically. Find out from
the AA website, if there is a support group that you can join,which is a very
source of support and will aid your progress.
>
http://www.guardian.co.uk/lifeandstyle/besttreatments/having-a-defibrillator-fit\
ted
> There is a good article on this site.
> Best wishes
> Sam.
>   ----- Original Message -----
>   From: Su
>   To: icdsupport@yahoogroups.com
>   Sent: Friday, March 20, 2009 3:58 PM
>   Subject: [icdsupport] Newly fitted ICD
>
>
>   Dear all
>   Its so nice to find this group, I had my ICD fitted in February 2009 so it
is still fairly new and very strange, the pain has almost gone from the implant
area now, but mentally I think its going to take a while to get my head round
the situation!!!
>
>   I have had Cardiomyopathy for the last twelve years and have been very lucky
because apart from having to take a truck load of tablets it hasn't really
affected my life, until Friday 13th Feb (of all days) I had a cardiac arrest,
was promptly taken to A&E where I had another one so was swiftly moved to the
Coronary Care Unit where I had yet another one but this time fortuanately I was
hooked up to all sorts of monitors so the doctors were able to tell exactly what
was going on.
>
>   Anyway to cut a long story short a few days later I had the ICD fitted and
am now trying hard to get back to normal, but its really reassuring from various
messages that I have read that this can take quite a while and I am not alone in
having these feelings!!!
>   Any comments from others would be most appreciated
>   Regards
>   Sue
>

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

From: Su

To: icdsupport@yahoogroups.com

Sent: Friday, March 20, 2009 3:58 PM

Subject: [icdsupport] Newly fitted ICD

Dear all
Its so nice to find this group, I had my ICD fitted in February 2009 so it is still fairly new and very strange, the pain has almost gone from the implant area now, but mentally I think its going to take a while to get my head round the situation!!!

I have had Cardiomyopathy for the last twelve years and have been very lucky because apart from having to take a truck load of tablets it hasn't really affected my life, until Friday 13th Feb (of all days) I had a cardiac arrest, was promptly taken to A&E where I had another one so was swiftly moved to the Coronary Care Unit where I had yet another one but this time fortuanately I was hooked up to all sorts of monitors so the doctors were able to tell exactly what was going on.

Anyway to cut a long story short a few days later I had the ICD fitted and am now trying hard to get back to normal, but its really reassuring from various messages that I have read that this can take quite a while and I am not alone in having these feelings!!!
Any comments from others would be most appreciated
Regards
Sue

Dear all
Its so nice to find this group, I had my ICD fitted in February 2009 so it is
still fairly new and very strange, the pain has almost gone from the implant
area now, but mentally I think its going to take a while to get my head round
the situation!!!

I have had Cardiomyopathy for the last twelve years and have been very lucky
because apart from having to take a truck load of tablets it hasn't really
affected my life, until Friday 13th Feb (of all days) I had a cardiac arrest,
was promptly taken to A&E where I had another one so was swiftly moved to the
Coronary Care Unit where I had yet another one but this time fortuanately I was
hooked up to all sorts of monitors so the doctors were able to tell exactly what
was going on.

Anyway to cut a long story short a few days later I had the ICD fitted and am
now trying hard to get back to normal, but its really reassuring from various
messages that I have read that this can take quite a while and I am not alone in
having these feelings!!!
Any comments from others would be most appreciated
Regards
Sue

Dear Mr Shunmugam,
It is very good to see that you made contact  with the ICD  support
group on line all the way from India.
I share a similar surname as you  spelling slightly  different from
your, shunmoogum,great great grand parents from India .
Now this is out of the way, let get back to your concerns.
Firstly I would like to clarify that you had your implant in Oct 2007 ,
you were almost one year free, when in July 2008 you started your V
Tach.The device worked firstly by pacing on two occasions and shock on
one.It appear that you had more shocks,but stopped at time of writing.
Angela's response is an excellent one about making a plan of action
should your device deliver therapy.This should contain thing  that Ben
mention:1identification given from the implant centre,2 emergency
contact of your local  cardiology department, 3 present medication,4
Next of kin.( this i based on the  NHS in UK, I am not familiar  with
India's health service) This plan can be shared to anyone you wish, i.e
family, work colleagues, friends and your doctor
The Idea of making the plan is reassuring oneself that help could be
obtained should if be needed.
To always carry a form of identification( in UK we have many) I have a
bracelet from MEDIC ALERT,with one phone call all my medical information
can be obtain 24/7 all over the world.you can find info on the web.
As both Ben & Angela suggested that you must make contact with your
local implant centre for check up following therapy.From your account it
appears that you have done  so  and hope they have made the necessary
adjustment in you device or medication  that will keep you shock free.
The way you felt after a shock, has been expressed by many ICD
owners.There are severals conversation going on about the support that
one requires following therapy.Oxford centre is looking at Cognitive
Behaviour Therapy (CBT)  .You can get more information on the web.It is
the fist time that I have heard about Hypnotherapy,hopefully one day we
may hear from Angela.
About driving, Ben has given you very sound advice, but again you as an
individual has had severals therapies and should have a very good idea
how you felt immediately before and after, and use that as your guide to
be a safe driver.
Again it is good to hear from you sharing your experiences and
expressing your concerns that we can all lean from.
I had my implant in 2005 and to-date I am free from therapy and have my
device check every six months.
Best wishes
Keep in touch
Sam.


--- In icdsupport@yahoogroups.com, Shunmugam K wrote:
>
> 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
>

Hello

I am so pleased to hear that you received the appropriate treatment
and had an ICD implanted in time for the ventricular tachycardia
episode you experienced in July 2007.
It is not uncommon to experience an array of physical emotions after
receiving a shock from your ICD. Some of our members have reported
that they feel like they have been suddenly kicked or pushed in the
chest. These shocks can be quite painful but the pain will only last
a few seconds, whilst others don't feel anything but suddenly jolt
for no reason.

You asked how do you know if the device is malfunctioning?

Well I expect your ICD is checked regularly by a physiologist or ICD
Nurse, and they will advise you as and when your battery needs
replacing. It will not be allowed to completely run down.
But if your ICD were to malfunction, it would signal an alarm. On
the rare occasion that this happens, you should contact your ICD
Clinic and book an appointment to see your ICD Nurse as soon as
possible. Please rest assured, that the alarm does NOT mean that
your ICD is not working – just like the fuel reserve warning in a
car; the warning light comes on but you still have enough fuel for
another 40miles.

Experiencing a shock when alone/driving…

If you experience any warning signs that your ICD is about to
deliver a shock (such as palpitations, or feeling light-headed or
dizzy) we suggest that you safely pull over and sit or lie on the
ground if possible. If you have somebody with you, let them know how
you are feeling.

After receiving a shock, you should recover quite quickly but even
if you feel well, you should still contact the implant centre as
soon as you can to arrange to have your device checked. You may need
to leave a message on the answering machine, but somebody should get
back to you as soon as possible.
However, if you feel unwell or if your ICD has given you several
shocks, we advise that you call for an ambulance or contact your
nearest hospital. Your ICD will then be checked to find out why the
shock was given.

It is extremely important to keep your ICD card with you at all
times so that the make, model and setting of the device can be known
straight away.

If you, or in fact any of our members, would like a copy of our ICD
booklet sending, please do not hesitate to contact me at
development@...

I hope this helps you.

Kind Regards,

Ben


--- In icdsupport@yahoogroups.com, Shunmugam K wrote:
>
> 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
>

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