What if…………?

What if my ICD gives me a shock?

Cardiff & Vale University Board Patients

First ever shock – contact electrocardiogram (ECG) department on 02920 743325 between 9am – 5pm Monday to Friday.

One or two shocks – inform ECG Department, but a visit to them may not be necessary.

Cwm Taf University Health Board Patients

All patients who have their cardiac device care at Royal Glamorgan Hospital should inform their Arrhythmia Nurse or Cardiac Device Clinic after experiencing any shock therapy.

Arrythmia Nurse – Dawn Watkins – 01443 443443 ext 6486 or Cardiac Device Clinic – 01443 443226

Multiple shocks or more than two shocks in quick succession – you will need to be admitted to hospital to check your heart rhythm and your ICD. You will need to call 999.

If the ambulance crew record an ECG make sure someone asks for a copy of the ECG reading.

Remember – after a shock, find a place to sit or lie down and try to keep calm. If possible, have someone stay with you throughout the event. These are guidelines only. If you feel unwell after a shock then you must seek medical advice. If at any time you need someone to talk to, then please contact one of our committee members who are more than happy to talk to you about life with an ICD.

 

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ICD’s and Home Monitoring

GwentDefibbers would like to thank Robert Williams for attending the June 2015 support group meeting.

Robert is a Highly Specialist Cardiac Physiologist in Cardiac rhythm management and works within Aneurin Bevan Health Trust.

mike & robert williams

Robert showed us various ICD’s  and we were able to note the differences which had taken place over the years. He explained the device was now ergonomically designed which was of benefit to all of us.

From google –

Ergonomic design ensures that people’s capabilities and limitations are taken into account in the design process of an item and that the end product is fit for use by the target users.

We discussed the monitors and were made aware that they are usually in ‘idle mode’ until ‘switched on’ at a pre arranged time, usually when we were at rest.

An example of a home monitor

example

The information from the device was then sent to a very secure site. Any abnormality that was noted would send an alert to our medical teams.

It is now possible to contact the Physiology Department if we are particularly concerned about our heart rhythm. In this instance we would send data to them and they could offer appropriate advice.

The physiology dept… The ICD

Andy Penny is chief physiologist at University Hospital of Wales, Cardiff and many of us will recognise him from when we have our devices checked.

 

AP showed the audience the size of the first ICD fitted, and the current ICD.  AP suggested that the audience ask questions as he went along.

The following are a selection of the questions asked:

Q. Although the ICD had been fitted on the left side of the body – could it be moved?

A. Yes, If it was causing a lot of restrictions and discomfort

Q. How long does the battery in the ICD last?

A. Depends on how often the ICD gives a shock – between 5 and 8 years.  This is only a guide as each individual is different.

Q. What is the average age of a person being fitted with an ICD?

A. UHQ are fitting ICD’s into babies who are demonstrating Arrhythmia problems.

MM thanked Andy for a very interesting Q&A session

My story…..

My story – Mr Mike Morgan.

Mike worked for a company doing research of Literacy in Wales. In August 2004 he was working in Caernarfon, North Wales when he began to feel unwell. Mike takes up the story

I had finished work for the day and was preparing for the long drive back to Tredegar.

It was a warm day and I decided to buy a bottle of water ready for the journey home. It was around 4pm when I came out of the shop and started to feel strange. I remember my head being thrown backwards twice.

I was told later when I woke up in Bangor Hospital that a Paramedic was passing the shop saw me collapse and gave me a shock. At the hospital a Doctor had found my ID Chain and my mobile phone and rang my daughter to tell her that her dad was in hospital. Unbelievably,the hospital didn’t do any tests although they stated that they thought my heart had stopped twice.  They told me not to drive myself home!

Tredegar is 300 miles from Bangor.

My son and daughter drove up to Bangor to collect me. On the Monday I visited my local GP.

My GP (who was excellent) told me not to drive until after I had seen a Cardiologist at Neville Hall Hospital. I met Dr Tony Davies at Nevill Hall Hospital who said that he needed to carry out an Echo scan. After the test was complete he gathered my family and told us that I was very likely have another attack which would be prolonged and I would not survive this attack. I was admitted onto the Cardiac Care unit and was told that I would need to go to the Heath Hospital to meet a Mr Peter O’Callaghan urgently.

The following day I was transferred to the Heath where I had an angiogram to check for blockages in/around the heart.

On Wednesday 10th August, Peter O’Callaghan requested that all my family come to the hospital as he needed to speak to them urgently. The news wasn’t very good on a scale from 1 to 10 my condition was a 9 ½. I was told I was ill but felt fine. The information began to get worse in that I was told that if I had another attack the next time I might not be so lucky. It was recommended that I had an ICD fitted. This operation was then delayed due to my having a lump on my back which needed to be removed. The resulting wound would need to heal before I had the ICD fitted.

This meant I could not go home because if I had another attack I would die but couldn’t have the ICD fitted until I had the lump on my back removed. I was then put on a monitor for the next six weeks. I could not get out of bed, no showering or using the toilet. It was decided that on the Saturday 30th August (Bank Holiday) that the lump would be removed, but the doctor could not use anaesthetic because they were unsure how this would affect my condition. I then had to wait for the wound to heal and on the 21st

September 2004 I had my ICD fitted. Mr O’Callaghan wanted to find out why I was having these blackouts, and wanted to run some tests. I underwent a turntable test, Neurological test, diagnosis I had was Epilepsy but then that idea was withdrawn. The final diagnosis was made by Neil Austin (not the Million Dollar Man) that they thought it could be the brain rejecting the ICD. I was taken off the Epilepsy medication.

Many people ask me has my ICD gone off – and the reply is Yes. I experienced one shock after another that the ICD aborted after 5 shocks. I was taken to Prince Charles Hospital where the staff (at the time) did not know anything about ICD’s. So it is important that all family and friends know as much as they can about your ICD, so that if you are not in any fit state to tell the hospital at least they can. I had the box changed in April 2010 and that was a straight forward procedure – I went in at 8am and was back home at 6pm. I felt well enough the following day to go out and about.

Every individuals experience is different. Gwent Defibbers is here to ensure that all their members get as much information about ICD’s to help support them, their family, friends and to educate the public.

If you would like to contact Mike to discuss any issues you may have please do not hesitate to give him a call on 01495 711658.

Hello Carl

Earlier this week we had contact from Carl Robinson who is a Senior Cardiac Physiologist. He specialises in pacemakers and ICD’s.

Recently Carl has started a website for patients and professionals and aims to make cardiology information easier for everyone to understand. The website can be found at http://www.thepad.pm/

The website has three pages in particular that individuals with ICD’s may find helpful…..

How the heart beats

http://www.thepad.pm/2013/07/simplified-heart-beat-conduction-system.html

How ICD’s work

http://www.thepad.pm/2013/09/simplified-icd-what-is-icd-implantable.html

Arrhythmias VT and VF – cardiac arrest simplified

http://www.thepad.pm/2013/09/simplified-fatal-arrhythmias-vt-and-vf.html

A newsletter is also produced and more details can be found here  http://us7.campaign-archive2.com/?u=8eb955f534e15057cd36fd7e1&id=d124d9fc51

You can also follow Carl on Twitter at https://twitter.com/thepadct or facebook at https://www.facebook.com/thepad.pm

Holidays & I.C.D. identification cards

The importance of carrying your ICD card with you should not be underestimated especially if you are going on holiday.

The arrhythmia alliance has produced an information sheet which should take some of the anxiety away when you go on holiday with an ICD.

The enclosed  leaflet offers advice regarding medications, vaccinations, airport security and lots more besides!

It was agreed that at the next meeting (September 2012) the secretary – Sandra Davies – will bring along a laminator.

The facility will enable members to cover their cards in a protective clear coat to prevent damage to the cards.