AFA Issue 3 - February 2009

February 2009 Issue 3 Providing information, support and access to established, new or innovative treatments for Atrial Fibrillation

Seeking Your Help to Spread The Word!

October 2007 saw the launch of AFA. That first year has passed in a whirlwind of activities and projects, including the publication of several information booklets, followed by two AF Checklists, pamphlets for medical professionals and a series of AF Fact Sheets.

Each publication has been approved by the Medical Advisory Committee (MAC) and endorsed by the Department of Health. The publications have been extremely well received by AF patients, carers and Healthcare staff, – and not just in the UK, requests for copies from as far a field as Hawaii, Spain, India, Iran and Australia have been received, so perhaps we should not be surprised that to date over 60,000 AFA publications have been distributed!

AFA is keen to build on the first year’s work; further patient information booklets are being written, and new titles to the existing AF Fact Sheets are about to be published. However, AFA NEEDS YOUR HELP! 8th-14th June 2009 will see Atrial Fibrillation Association joining Arrhythmia Alliance to promote ‘Arrhythmia Awareness Week’

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(AAAW). During this week, events are being held throughout the UK – and AFA warmly welcome your help.

Could you deliver a pack of AFA publications to a medical centre?

Would you be happy to share information from AFA with a local group? Enclosed in this newsletter is an AFA poster, we would be delighted if you would display this in a local library, shop or ‘drop-in’ centre and in doing so, help spread awareness of Atrial Fibrillation.

The easiest way to detect AF is to ‘Feel The Pulse’. Are you a Healthcare Professional or First Aid trained? Would you be willing to run a ‘One stop pulse check’ during AAAW perhaps in your local shopping centre, leisure complex, golf club or work?

Simply for one hour, offer a free ‘Pulse Check’, if you detect an irregularity suggest they make an appointment with their GP for a further check. Working with the Arrhythmia Alliance, AFA can provide posters, information

booklets and pulse check diaries to support your event.

Please contact AFA for FREE materials and help raise awareness – so ‘Present a Poster’, ‘Leave a Leaflet’ or choose to ‘Pass on a Pack’ and be part of Arrhythmia Awareness Week 2009!

Please feel free to contact Jo at AFA to order your pack or discuss ideas further.

Atrial Fibrillation Association PO Box 1219 Chew Magna BRISTOL BS40 8WB UK www.atrialfibrillation.org.uk +44 (0)1789 451 837 Info@atrial-fibrillation.org.uk Registration Number: 1122442 ©2008

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IMPORTANT DATES FOR 2009 Invitation to AFA members to meet up at the 2009 Arrhythmia Alliance Regional Meetings This year’s Arrhythmia Alliance regional meetings will be largely focusing on Atrial Fibrillation, this is a great opportunity for AFA members to attend, learn more about AF from local specialists and meet other AF patients and carers. Meetings run all day, but AFA members are welcomed to either ‘sign up’ for the full day or choose from two alternative options. Either, you are warmly invited to ‘drop-in’ for coffee, collect information booklets and meet and chat with other arrhythmia patients in an informal setting; or, enjoy a hot lunch and attend the afternoon session on AF. Registration for lunch and the afternoon meeting is £13.50.

Please email events@stars.org.uk or telephone Jo: 01789 451837 to register your interest and receive further information about the regional meeting closest to you.

♥ A-A Regional Meeting Dates for your Diary 19th March 2009 25th March 2009 15th April 2009 29th April 2009 11th June 2009 12th June 2009 10th September 2009

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Midlands - Ettington Park Hotel, Stratford upon Avon London - Novotel London West, Hammersmith South West - Hilton Bristol North West - Manchester Scotland - Edinburgh North - Leeds Wales - Barceló Cardiff Angel

TBC

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South - Hampshire

TBC

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Ireland - Belfast

Medical Professionals: Email events@stars.org.uk or visit www.heartrhythmcharity.org.uk to register

AFA PATIENT DAY 2009 Sunday 18th October 2009 Hilton Birmingham Metropole

(A day when sessions are presented for AFA members with opportunity to ask questions and hear from other AF patients) This year, AFA Patient Day will be held on Sunday 18th October at the Hilton Birmingham Metropole (by the NEC). We are hoping to obtain financial support that will enable us to offer a reduced registration cost for AFA patient members of £25.00.

The offer will only apply to those members who register directly through AFA at events@stars.org.uk, when making contact please state that you are an AFA member to ensure you receive your discount.

Last year, a number of AFA patients attended and said how much they enjoyed the day and appreciated the diversity of topics and the opportunity to talk with other members. One of our members, Bob, was prompted to write his account of the day…….

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 2

Tel: +44 (0) 1789 451 837

Heart Rhythm Congress 2008 – A View From The Audience

By Bob Dove Soon after moving to Devon, about 5 years ago, the “flutters” which I had experienced for a few years became more frequent and violent and some great doctor finally diagnosed that I had Atrial Fibrillation. Two RF ablations and two cardioversions later I am less troubled by the condition but am now passionate about the subject of AF. The chance to visit Birmingham for the Heart Rhythm Congress this year was therefore too good to miss. AFA had arranged a patient’s day and I hoped that this would enable me to meet with other sufferers and clinicians and learn more about the condition and treatment.

Close by the registration area was a large hall full of manufacturer’s stands showing all kinds of devises such as ICD, pacemakers and the complex equipment used in RF and cryogenic ablations. As an engineer I found this fascinating even though I have no idea what it is like to use, only having been on the receiving end.

Soon it was time to find the meeting room and begin. The Chair was Ken Timmis, with Trudie Lobban from Arrhythmia Alliance welcoming everyone to the day.

First on, Peter, an AF sufferer, who gave us a talk on his own fight against the condition and the problems he encountered in finding the right doctor with the skills to help him control his AF without rendering him incapable of normal function.

Having once been told that my “flutters” were a result of a large meal filling my stomach so that I could feel my heart, I have some sympathy and understanding.

There is still sadly a great deal of ignorance of the condition even amongst some of the medical profession.

Bob with Jo Jerrome Next, Nicola Meldrum, an arrhythmia nurse, followed by Dr Andreas Wolff, a GP from Yorkshire, and then Nick Linker, an electrophysiologist from James Cook University Hospital in Middlesbrough who discussed the question of fast and slow heart rhythms commenting on when too slow might be too slow and vice versa. This also enabled him to bring in the question of pacemakers and ICDs.

“Through amusing explanations those present left with a much better understanding of the problem!”

Probably the most amusing and involving session in the morning was presented by Patrick Doherty, a professor from York University entitled “Is exercise bad for your heart?”

He explained how treadmill stress tests were actually quite bad for the patient as the heart did not

appreciate being wound up faster and faster and then a sudden stop to the exercise. Next, he listed five activities and invited us to put them in order of most stressful, these being walking, car washing hovering, jogging and sex. He explained that the psychological stress involved added to heart stress thus making hoovering more stressful to men than women as they did it less frequently. Sorry Patrick, not in our house. We were all surprised to see that sex was at the bottom of the list although many of us wondered about that!

Guess it depends on with whom.

Jayne Mudd, AFA Trustee and Arrhythmia Nurse Specialist, began the afternoon session; she was followed by Tim Betts, an electrophysiologist (EP) from Oxford who provided facts and information about AF. He was followed by Steve Murray, an EP, who spoke about drugs used in the control of AF and the ways that they operated on the body and the electrical system of the heart.

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 3

Through amusing explanations those present left with a much better understanding of the problem!

“As any sufferer will confirm, AF is very scary.”

Debbie Sevant, guided us through cardioversion; and after tea, Richard Schilling, an EP from St Bartholomew’s in London discussed radio frequency ablation.

When one considers that this particular science is still very young

it only magnifies my admiration for these dedicated doctors.

The last talk interested me very much as it reminded me of my own struggles, it was from Angela Griffiths, an Oxford nurse running a rapid access AF clinic. She explained how the availability of such a clinic effectively provided a one stop shop for AF Patients and greatly shortened the time it took between diagnosis and treatment.

I can add to this by drawing on my own experience and stating that the early contact with knowledgeable

medical staff is most important.

The several years I spent before I was properly diagnosed were probably the most stressful of my life and as stress can exacerbate the problem of AF it probably contributed to my condition. As any sufferer will confirm, AF is very scary.

I drew from the day a better understanding of the whole subject, and at the same time I met some of the people who work so hard to make our lives easier and was able to thank them.

Living with and Accepting AF, at 34 years of age - A Patient’s Perspective By Martin Harman and I felt as if I was falling over.

I could feel my heart thumping against my chest and I was very short of breath. After consulting my local GP who identified the AF from an ECG, I was admitted to hospital for 4 days whilst I underwent various tests to try and identify if any underlying cause was triggering the condition.

Ultimately they found nothing. The cardiologist I saw believes the episode was possibly triggered by the general anaesthetic although I am still not convinced to this day as I have had 3 general anaesthetics previously without a problem.

“I intend to be in control of my life, not be controlled by AF!”

I was just short of my 34th Birthday when I was diagnosed with AF in October 2006.

I have always been a fitness fanatic, but playing football one weekend I sustained a bad knee injury that required surgery. The day after my operation I began suffering from palpitations, excessive sweating, and dizzy spells. I felt like someone

was tightening a strap around my chest and I was short of breath. I thought nothing of it at the time and just assumed it was a side effect of the general anaesthetic.

Two days later and still having the symptoms I got up to make a cup of tea when it hit me. The palpitations, the sweating, the dizziness, the room started to spin

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 4

“I felt like my life had been taken away from me” I was eventually discharged and sent home (still in AF) and told, “See you in 3 months at the out patient clinic!” That was it, no information, no guidance, just an appointment for the anti-coagulation clinic. Thankfully, a staff nurse, simply out of her own kindness, found a BHF AF leaflet, but that was the only information I was given.

Tel: +44 (0) 1789 451 837

So the next 3 months I spent educating myself about AF; websites, chat groups and speaking to other sufferers.

The most difficult thing for me was coming to terms with what I had, the impact it was having on me and how this was affecting my life. I felt like my life had been taken away from me. I know that sounds dramatic, but at the time that is how it felt.

Going from doing what you want, taking it for granted, to then not being able to do anything, is tough to come to terms with. For 3 months my life consisted of my house, with the occasional 10 minute walk around the village! I went through so many emotions, anger and frustration, looking for someone to blame, wondering why this happened to me! Did something go wrong? Was too much anaesthetic administered? Questions rolled over in my mind.

I tried all different medications, different strengths, different combinations and nothing was working. I remained in AF permanently and could not even walk up the stairs without my heart rate racing! I was unable to work and I couldn’t even walk for longer than 10 minutes. It was a battle against both the physical impact on me, and the mental one. I really struggled to come to terms with how my life was, and it is easy to fall into the trap of thinking it will never get better, is this is how my life is going to be?

My wife, family and work colleagues were very supportive of me at this time and I do think that was essential to aiding my recovery.

You often forget about the people who have to sit and watch what is happening to you and they can’t do anything to help, other than just be there for you, but that was enough.

My GP was fantastic, extremely understanding and was always supportive when I went to see him.

We worked together with different medications in order to find one that would ultimately work and finally we did.

Amiodarone eventually got my heart under control and after 3 months reverted me back to NSR! The side effects were a concern, so I came off Amiodarone and began to use Flecainide alongside a beta-blocker. I had intermittent AF episodes along with prolonged attacks of ectopic beats. I was a regular visitor to my A&E department at the local hospital.

Typically though, by the time I got to hospital the episode had passed!

Gradually I become stronger, eventually returning to work full time and I slowly started to exercise again. By early 2008 I had managed to put on the weight I had lost, was exercising daily and felt like my old self. I still had episodes but only occasionally. So, in discussions with my GP, I decided that I would stop taking my medication. I wanted to know if my body needed the drugs to control the occasional attacks.

How would I know unless I stopped taking them? As I am relatively low risk because of my age and overall health other than the AF, he agreed and helped me.

Warfarin was first, then gradually over the next 3 months I came off all my medication. My symptoms are no worse, I still have the odd episode, but mine tend to be short, about 1 – 4 hours maximum and I get prolonged ectopic beats occasionally.

“Is this is how my life is going to be?”

I have learned to understand the signs. I know what triggers my AF - it’s the usual list you hear time after time, alcohol, caffeine - but I also suffer if I get overtired, or stressed. It doesn’t mean I don’t enjoy the occasional alcoholic drink or a few cups of coffee, but I have to be careful. I also make sure I am well hydrated drinking 2-3 litres of water a day. I found keeping a record of what I ate, drank and how I was feeling helped me notice the pattern and ultimately helped me to

live a near normal life! I understand not everyone is as fortunate as me and that’s why I want to help AFA. I am far more educated about AF than when I was diagnosed. Back in 2006, I had never even heard of AF! But it’s amazing how much more I am still learning about the condition and how to live with it.

AFA has been great and the patient day in October 2008 was excellent.

I urge anyone reading this, or who has AF, to attend in 2009. I learnt more in 1 day than in the last two years.

For the future, well, I want to do whatever I can to raise awareness of this condition, despite rising numbers of patients, there is a lack of good, useful information.

AFA is changing that and the more knowledge that people have, the better equipped they are to lead some kind of normal life. I believe that with better information, education and understanding at the time I was diagnosed, I would have coped better.

Two years on I am almost back to my normal self, no longer on medication, managing my condition and living a fairly normal life, with just the occasional setback on certain days. I am exercising daily and training to compete in a triathlon - all for the AFA charity of course!

I realise others may think “lucky you”, but that is one of the reasons I wanted to share my story. I appreciate that I am one of the more lucky ones, perhaps not as symptomatic as some AF sufferers. Maybe because I am young it is not so frequent and this may change as I get older, but for now, I intend to be in control of my life, not be controlled

by AF! I want to share my experiences with people, particularly younger people, in order to try to help anybody out there who is going through what I went through, as I understand how difficult it is to live with and accept AF.

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 5

A Note from Liz OUT & ABOUT …. and feeling safe!

After several years of “funny turns”, lasting from a few minutes to several hours, repeated visits to the GP etc, a serious episode in November 2006 with a heart rate of 160, cold sweats, breathlessness & feeling very faint, led to an emergency 999 trip to the hospital and finally a diagnosis of Paroxysmal Atrial Fibrillation.

Drug treatment trial & error plus two ablation procedures didn’t seem to help that much, as the random episodes continued, some minor, and others major with further hospital admissions. After 2 years my current medication seems to be better suited to my situation and things for now seem to have medically improved a great deal.

However for me, the real impact of the ‘Atrial Fibrillation” has been emotional, with a large dent in

my self-confidence, sense of independence and quality of life.

Having spent my working life in some fairly high powered roles that involved living and travelling throughout Europe and across America interacting with the senior executives of international companies, I became afraid of travelling alone more than a few miles from home and certainly not outside the catchment area of my local hospital where they know me and have my data on hand.

travelling alone anywhere and the lack of independence that caused.

Then by chance, from a magazine, I discovered the Medipal ID Cards and Key Ring Fob. Such a simple idea, a credit card piece of plastic that had all the essential information printed on it for any paramedic or Emergency Department doctor to see and use in understanding my current condition/medication and previous history, plus my partner’s & GP’s contact numbers.

This level of vulnerability and scare was hard for my self esteem to deal with, to accept that I did not have control and was not able to fix or seemingly get it fixed has become a life changing learning experience for me and has taught me a lot about my life and the values that are important ……… …… but I still hated my fears about

These days whenever I leave the house alone, I have my keys with the fob telling the world that I carry a medical ID card, and I have a purse with the ID card clearly visible in the plastic window, at last I feel safe. To be honest there is always a small level of anxiety but it’s O.K. and I can get in the car and go where I want or need to go.

Medipal is a charity which produces medical cards, further details can be found on their website: www.medipal.org.uk

Please will someone listen?

Six years after almost fatal heart attack but with good recovery, I was able to walk up to ten miles on level ground.

However, on my regular walks to the local supermarket (2 mile return trip) I noticed that I had to stop and recover my breath every 100m or so. I saw a local GPs who suggested I may be suffering from panic attacks. I was surprised, but took on his advise. Even so, long periods of palpitations, continued.

So I saw a new GP who agreed with the first diagnosis.

You1ST

AFA, PO Box 1219,

I felt so ill, I wanted someone to listen, and soon took myself to A&E. I was admitted immediately, with an erratic pulse rate of over 200bps, and spent five days there before the situation was stabilised enough for discharge. This soon led to a cardioversion which stopped the AF for about a year, although subsequently I now find myself in established AF.

Chew Magna, Bristol, BS40 8WB

I just wish someone had listened to me, looked at my medical history and taken my family history.

I may have avoided months of feeling so ill.

Dave Further details of these and other AF Patient Case studies can be read on the AFA website, www.atrialfibrillation.org.uk AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 6

Tel: +44 (0) 1789 451 837

The role of the Specialist Arrhythmia Nurse Arrhythmia care is often best when supported by a team of specialists.

Jayne Mudd and Angela Griffiths, both Arrhythmia Nurse Specialist highlight their innovative work which has lead to the expansion of local arrhythmia services.

It is now widely recognised that the skills and expertise nurses bring to arrhythmia services are extremely valuable. This has resulted in a dramatic increase in the number of nurses specialising in arrhythmia management with in the United Kingdom. The role of the specialist arrhythmia nurse is diverse and varies dependent on local service needs. Some nurses will focus on one specific aspect of arrhythmia management for example providing care for patients with Atrial Fibrillation (AF). Others may work as part of a large team providing specialist care for all patients with arrhythmias.

“First level degree and Masters level qualifications” Although there may be differences in the specific areas that the nurses focus on there are a number of generic aspects to the roles. Central to the roles is that the nurses will have undertaken general nurse training and then extended their skills and knowledge within arrhythmia management in order to provide a comprehensive service for patients with heart rhythm problems and their families/carers. This often requires the nurses to take on roles that have traditionally been considered as doctor or physiologist roles for example clinical examination, catheter ablation technical support, or device interrogation. The development of these skills requires the nurses to complete comprehensive competency based training programmes within their clinical areas and to achieve first level degree and masters level qualifications pertinent to arrhythmia management. The

majority of specialist arrhythmia nurses are therefore skilled in clinical assessment and examination, able to initiate investigations and interpret results, make accurate diagnosis, advise on and deliver treatment plans and obtain informed patient consent for specific procedures. Many of them will also have or be working towards non medical prescribing qualifications enabling them to prescribe and titrate medical therapy pertinent to arrhythmia management. The nurses will have clinical mentors that provide training and support who will ideally be consultant cardiologists with a specialist interest in arrhythmia management.

Jayne Mudd and Angela Griffiths are nurses who have chosen to s p e c i a l i s e i n a r r h y t h m i a management. They have both developed their roles to meet the needs of their local patient groups and within this article describe how they deliver their services.

Jayne is based at The James Cook University Hospital (JCUH), Middlesbrough which is a large tertiary centre serving a population of 1.7 million. Jayne has worked in arrhythmia management for nine years and is part of a multi disciplinary team specialising in providing care for patients with heart rhythm disorders. The team is made up of doctors, specialist nurses and cardiac physiologists.

There are seven specialist nurses within the team and Jayne has take n t h e le a d a lo n g s id e Consultant Cardiologist Nick Linker in developing this role at JCUH since its inception in 1999.

When first in post Jayne worked in isolation and was only able to focus on one area of arrhythmia

management which centred on patients who had implantable cardiovertor defibrillators (ICD’s).

The increase in the numbers of nurses within the team has now allowed for the development of a fully comprehensive specialist nurse service which serves patients with or suspected of having an arrhythmia, their families/carers and other health care professionals.

The nurses work across the hospital trust and also provide out reach services into the local community. Their role is extremely varied and allows them to follow the patient through their journey facilitating continuity of care. An outline of the service they provide is given below.

Education: Providing education is an extremely important part of the specialist arrhythmia nurse role.

This is continuous through the information and advice that is given to patients/carers on a daily basis in clinics and within the ward areas. The nurses expertise and knowledge allow them to provide patients and carers with all the relevant information relating to their condition and treatment options.

They spend time with the patients and carers and encourage them to ask any questions they may have. The provision of education/ information is essential in allaying patient concerns/anxieties. It enables patients to be involved in their care and to make informed decisions with regards to their treatment options. The nurses also provide education for other

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 7

health care professional in the form of teaching sessions and presentations with the aim of increasing awareness of arrhythmias their detection, diagnosis and available treatments.

The nurses within the team deliver teaching sessions/presentations, locally, regionally and nationally.

The team have also developed masters level modules in arrhythmia management which are run at the local university to ensure that other health care professionals have the appropriate skills and competencies to deliver care for patients with heart rhythm problems.

Arrhythmia telephone helpline: The telephone helpline is available for patients/carers and other Health Care Professionals. Manned by the specialist nurses 8 am to 8pm Monday to Friday this aspect of the service allows for the provision of ongoing support and advice. The service is used by patients/ carers who may have concerns about their condition, current medications or other aspects of their treatment. Health Care Professionals such as GP’s and Practice Nurses often use the helpline for advice with regards to medication changes or specific patient problems. The service is available for all patients/carers even after they have been discharged from the service. It facilitates easy access to the s p e c i al i st car diac rhythm m a n a gem ent team and is extremely well utilised.

Nurse led clinics: The nurses run new patient, pre admission and review clinics with the tertiary centre. Within the new patient clinics the nurses provide verbal and written specialist advice and information with regards to the patient’s diagnosis and treatment options. They work with the patient to ensure that all aspects of diagnosis and care are understood.

Patients are given time to discuss treatment options and ask questions about their condition.

Pre admission allows for patients to be fully prepared prior to being admitted to undergo procedures.

Within pre admission the nurses are able to assess and clinically examine patients, initiate tests and interpret results, reiterate advice pertinent to forthcoming procedures and allay any patient/ carer concerns or anxieties. Nurse led review involves the nurses re-assessing the patients following changes to medical therapy or after a procedure has been performed for example a device implant or an ablation. The nurses can titrate and initiate medical therapy and if is appropriate they are able to discharge the patient providing ongoing support via the arrhythmia helpline or through patient support/ education meetings.

“care professionals often use the helpline for advice” Ward rounds: The nurses take part in the consultant cardiologist ward rounds which means that they are aware of what is happening with the patients treatment plans therefore ensuring timely provision of specialist nurse intervention if required. Taking part in the ward rounds is also a valuable e d u cation a l o p p o rt u n it y f o r the nurses.

Discharge post procedure: Once the patients have undergone their procedures the nurses will assess them and make a decision as to whether the patient is fit for discharge home. This involves checking wounds, chest X-rays, ECG’s and blood results post procedure. The nurses will also make sure the patients have all the relevant information with regards to post procedure care and that any concerns/anxieties have been addressed. Any drugs that need prescribing or titrating at this point can also be done by the nurses.

Informed consent: When patients

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 8

are undergoing procedures such as ablation or device implant they will be asked to sign a consent form to say that they understand what the procedure involves and are aware of the success rates and potential complication rates.

The nurses spend time with the patients discussing this prior to obtaining signed consent from them. The nurses have to complete competency based training which is signed off by a consultant cardiologist before they are deemed competent to take informed consent.

Patient Support/Education Meetings: The nurses organise and run patient support and education meetings three times a year.

Currently these meetings are only provided for patients who have implantable cardiovertor defibrillators (ICD’s) and their carers. This group of patients have quite diverse needs and tend to need ongoing support and advice.

During the meetings the nurses provide advice and information pertinent to the patients’ condition/ device. The meetings also enable patients to meet others who are in a similar position and who may have the same concerns or anxieties.

Community outreach services: The ethos of the CRM (Cardiac Rhythm Management) specialist nurse team has always been to provide innovative and quality care for patients. Following the publication of Chapter 8 of the National Service Framework for Coronary Heart Disease the team were keen to introduce new ways of working to ensure that they were meeting the quality requirements set out in the document and thus continuing to improve the patient experience. The development of the community outreach service has enabled them to do this. This is the CRM teams’ most recent development and has enabled them to take their specialist services into the community thus improving access for patients. The specific aims and objectives for

Tel: +44 (0) 1789 451 837

the service are: • to achieve a single referral point for patients with suspected arrhythmia • to provide a triage system ensuring that patients are signposted to the most appropriate care setting • to improve patients/carers

access

for

• to provide a one stop shop model in the patients own local settings • to treat patients in primary care where appropriate • to ensure equity of access for patients to specialist procedures • to fast–track patients with potentially life-threatening conditions • to reduce waiting times in secondary care for patient appointments and procedures, achieving the 18 week referral to treatment target • to offer support and education to patients with arrhythmias and their carers • to ensure delivery of the national service framework for coronary heart disease and national institute for clinical excellence standards relating to arrhythmia care The service consists of nurse led community arrhythmia clinics and ongoing support and advice provided through the existing arrhythmia helpline. The community arrhythmia clinics offer a nurse-led, triage, assessment and treatment service for patients presenting to primary care with the symptoms of arrhythmia. The team provide a responsive service for GP referrers and their patients, giving rapid assessment of patients’ clinical condition and needs, through a one stop shop model.

Patients are assessed, clinically examined, echocardiograms are performed and further tests such as ambulatory ECG monitoring and trans telephonic monitoring are initiated to aid diagnosis. The

service allows for fast-tracking of patients to secondary care who require more specialist tests or procedures whilst allowing patients with more benign conditions to be managed within Primary Care. It ensures equity of access for patients relating to clinical need and avoids unnecessary hospital appointments. The clinics are based in primary care settings to offer local access. The service enables the local community to make effective use of scarce resources and clinical expertise, thereby reducing patient waits and releasing consultant time.

The service is led by the specialist nurses with sessional support from physiologists, health care assistants and dedicated administration. All patient care plans are discussed with a consultant cardiologist with a specialist interest in arrhythmia management and time is allocated in their work plans to allow for this.

Patients are provided with comprehensive verbal and written information with regards to investigations, diagnosis and treatmen t o p t io n s . Writ t e n information is provided in the form of booklets and fact sheets developed by the Arrhythmia Alliance (AA) and the Atrial Fibrillation Association (AFA). As part of the service package, patients are also given access to the Arrhythmia Service help-line at JCUH, for any queries about their condition.

Service Development: The development of services for patients is ongoing and the nurses are involved in introducing and developing new ways of working to improve care delivery for patients. By working closely with the patients the nurses are in an ideal position to assess their needs and act as their advocate with regards to Angela Griffiths has specialised in arrhythmia management since 1992, where she worked at St George’s Hospital for Professor John Camm. Her role at the John

Radcliffe Hospital was instigated in 2001. Initially she was the only arrhythmia nurse specialist, working alongside one Cardiologist who specialises in heart rhythm management. Since then the Cardiac Rhythm Management Team has expanded to include 3 Consultants, an Electrophysiology Fellow, Registrars, Cardiac Physiologists, 1 further Arrhythmia Nurse Specialist and 2 Implantable Cardioverter Defibrillator (ICD) Nurse Specialists.

To begin with, Angela’s main responsibilities were in the development of an Atrial Fibrillation clinics, education and research.

Much of her role is similar to that of the nurse specialists in JCH, Middlesborough.

However there are some differences, which reflect the local requirements of the service. Since being joined

by Tara Meredith in 2007, the arrhythmia nurses role has developed to include additional responsibilities such as, technical support during catheter ablation.

This unique role within the UK came about due to a shortage of electrophysiologically trained cardiac physiologists in the Oxford area. The arrhythmia nurses have taken on this role, after a period of competency-based training and further academic study. Providing technical support involves assisting the Consultant during invasive EP procedures in the form of operating the electrophysiological system, interpreting the intracardiac electrograms and utilising the energy delivery system during catheter ablation. In addition to enabling service provision within CRM, the skills that the nurses have gained means that continuity of care is provided for the arrhythmia patients.

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 9

Focus On: Warfarin This issue offers a comprehensive series of articles focusing on warfarin and begins with an article by Dr Matthew Fay, GP, who presents results from recent anticoagulation studies.

Anticoagulation and the Risk of Bleeding

Atrial Fibrillation

Dr Matthew Fay, GP

is a common condition increasing in prevalence with increasing age. It is estimated that 600,000 people are currently affected however this figure may be an underestimation. In some people AF can be very symptomatic; unfortunately it also increases the risk of ischaemic stroke. In fact, in patients over 65 years of age, it results in a five-fold increase in ischaemic stroke, while in non-valvular AF 15-20% of all ischaemic stroke patients have AF. In patients suffering with Atrial Fibrillation but receiving no form of anticoagulation, 35% will suffer a stroke which may contribute to vascular dementia and cognitive decline.

When looking at stroke risk two important studies should be noted; ‘Stroke Prevention in Atrial Fibrillation’ (SPAF) showed that stroke rates in Paroxysmal Atrial Fibrillation had similar rates to Persistent AF. The second is the Atrial Fibrillation Follow-up Investigation of Rhythm Management (AFFIRM) trial that demonstrated that the rhythm control group suffered the same incidence of stroke as the rate control group in patients not receiving anticoagulation.

From this we can see that patients who suffer from all forms of AF should receive some form of anticoagulation. The need for this is reflected in

the Quality and Outcome Framework where the appropriate diagnostic test (the ECG) and intervention with antithrombotic therapy is awarded 10 points.

meta-analysis further showed a reduction in all-cause mortality in the anticoagulated group. In this review warfarin was more effective than aspirin in reducing the risk of ischaemic stroke.

Stroke Prevention

An updated meta-analysis of 29 trials compared doseadjusted warfarin and aspirin, and revealed a stroke reduction in the anticoagulated (warfarin) g ro u p o f 6 4 % , c o m p a r e d to 22% in the anti-platelet (aspirin) agent group, again showing formal anticoagulation to be more efficacious than antiplatelet therapy.

In a meta-analysis of 13 trials it was found an adjusted dose of warfarin significantly reduced the risk of ischaemic stroke compared with placebo. No significant increase in the risk of intracranial haemorrhage was seen between the anticoagulation group and those in the control groups. This

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Birmingham Atrial Fibrillation Treatment of the Aged (BAFTA) Study Concerns about the use of formal anticoagulation in a practical primary care setting were studied in 2007 in the BAFTA study. This demonstrated that anticoagulation with a controlled warfarin dose achieving an INR between 2-3 was more effective than aspirin at 75mg in the older (over 75 years) patient in a primary care setting. This also demonstrated that there was no significant difference in major bleeding events between the two groups.

In view of the high risk of stroke in the older population and the effectiveness of anticoagulation in reducing this risk, there is an argument to use life long anticoagulation more often in this group unless clear contraindication.

In patients with non-valvular AF when aspirin is compared to placebo it reduces stroke by 22%, which is very similar to the affects of aspirin on stroke prevention in patients regarded at high risk of stroke. Most of the evidence supporting aspirin’s use in Atrial Fibrillation comes from the SPAF study where two cohorts of patients were studied, those unable to receive formal anticoagulation and thus given aspirin or

placebo and the other being those who could be anticoagulated, and the comparison was between warfarin and aspirin. In the

or TIA. People are regarded as low risk with a score of 0, intermediate risk with a score of 1-2 and high risk if greater than 3.

CHAD 2 score

Adjusted annual stroke rate (%)

NNTs

Risk of major bleed (per 100 patient years)

0

1.9

53

Warfarin

1

2.8

36

2

4.0

25

3

5.9

17

4

8.5

12

5

12.5

8

6

18.2

5

first group there is a clear relative risk reduction of 94%, however in the second group aspirin only offered a merger relative risk reduction of 8%.

From this it is clear that aspirin can not be seen as an adequate alternative to warfarin in high risk patients.

Risk Stratification-CHADS2 Risk factors for stroke include diabetes, hypertension, congestive cardiac failure, being over 75 and impaired left ventricular systolic function.

The CHADS2 criteria are based on a combination of two previous risk assessment schemes to grade people in to low, moderate and high risk.

This is scored with a point each for Congestive Heart Failure, Hypertension, Age over 75 and Diabetes and two points for previous history of Stroke

Aspirin

2.2

1.5

The current opinion would suggest that the risk benefit point for the patient when being graded through the CHADS2 scheme would be a score of 2 or above.

Summary Atrial Fibrillation is an increasing issue with the increasing age of our population. The causative link between AF and ischeamic stroke is well demonstrated.

It is clear that warfarin is currently the most efficacious agent in reducing this risk in the intermediate and high risk patients. The BAFTA study has shown that this is a safe agent in the older population with risks below the normal perception of the clinician. If formal anticoagulation is not acceptable due to concurrent risks in the individual patients case then aspirin can be used.

i) Flaker GC, Belew K, Beckman K, et al; AFFIRM Investigators. Asymptomatic atrial fi brillation: demographic features and prognostic information from the Atrial Fibrillation Follow-up Investigation of Rhythm Management (AFFIRM) study. Am Heart J 2005; 149: 657–63. ii) Lip GY, Edwards SJ. Stroke prevention with aspirin, warfarin and ximelagatran in patients with non-valvular atrial fibrillation: a systematic review and meta-analysis. Thromb Res 2006; 118: 321–33. iii) Hart RG, Pearce LA, Aguilar MI. Meta-analysis: antithrombotic therapy to prevent stroke in patients who have nonvalvular atrial fibrillation.

Ann Intern Med 2007; 146: 857–67. of an educational intervention programme. The West Birmingham iv) Mant J, Hobbs FDR, Fletcher K, et al. Warfarin versus aspirin for stroke prevention in an elderly community population with atrial fibrillation (the Birmingham Atrial Fibrillation Treatment of the Aged Study, BAFTA): a randomised controlled trial. Lancet 2007; 370: 493–503. v) Stroke Prevention in Atrial Fibrillation Investigators.

A differential effect of aspirin in prevention of stroke on atrial fibrillation. J Stroke Cerebrovasc Dis 1993; 3: 181–88.

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Atrial Fibrillation Association PO Box 1219 Chew Magna Bristol BS40 8WB 01789 451 837 Info@atrial-fibrillation.org.uk www.atrialfibrillation.org.uk

Atrial Fibrillation Association PO Box 1219 Chew Magna Bristol BS40 8WB 01789 451 837 Info@atrial-fibrillation.org.uk www.atrialfibrillation.org.uk

Aspirin Introduction

How does it work

Prostaglandins are locally produced hormones that have many functions in the body including the transmission of pain, producing inflammation and also work on the thermostat in the brain stem to affect temperature. It is because of this action on the prostaglandin hormones that Aspirin can also be used as an analgesic (Pain Killer), anti-inflammatory and as a antipyretic (temperature reducing) mediation.

Clinical Use Anti-thrombotic: The most common use of Aspirin when taken on medical advice is as a medication to reduce the risks of clot formation. This use in patients who have suffered strokes, heart attacks, circulation problems and Atrial Fibrillation is to reduce the risk of clots forming in the heart or the arteries and causing further problems. In this setting it is used at a low dose for the long term.

Aspirin for AF: Aspirin will reduce stroke risk by about 20% in AF. It is very convenient to take

Indigestion: Aspirin can cause indigestion and in some cases stomach ulcers and bleeding from the stomach lining. If someone using aspirin to reduce the risk of strokes or heart attacks finds that it is causing indigestion they should consult their normal doctor or specialist nurse who may consider further investigation or the additional prescription of stomach protecting medication.

Tinnitus: The symptom of ringing in the ears (Tinnitus) is not normally an issue when prescribed in low dose as used to prevent strokes and heart attacks. If this symptom develops while taking aspirin it is advisable to consult your normal doctor.

Many clinicians currently in practice when educated about atrial fibrillation were taught that this was a benign arrhythmia, however with interest growing in this area it is clear that this is neither a benign issue nor a well understood situation.

In a year that has seen the first AF Europe conference held in London and the formation of the Atrial Fibrillation Association it is an opportunity of focus on the many changes that have occurred in the understanding of Atrial Fibrillation.

Although this clear distinction is made it is also apparent that different patients can respond in different ways once Atrial Fibrillation has commenced.

Paroxysmal Atrial Fibrillation: When a person lapses in to Atrial Fibrillation and then returns to sinus rhythm within 7 days without intervention Persistent Atrial Fibrillation: When a person lapses in to Atrial Fibrillation for a period of in excess of 7 days and less than 1 year (or less than 7 days when treated). In this setting a return to sinus rhythm should be anticipated through intervention Long Standing Persistent Atrial Fibrillation: When a person lapses in to Atrial Fibrillation for in excess of a year however remains amenable to interventional therapy to return to sinus rhythm Permanent Atrial Fibrillation: When a person lapses in to Atrial Fibrillation without any prospect of a return to sinus rhythm.

Classification of Atrial Fibrillation There is a clear distinction between the rhythm of the heart with atrial contraction (sinus rhythm) and when the atrial contraction becomes erratic and a diagnosis of Atrial Fibrillation is made.

The dilemma for the clinician involved in the management of the patient is to classify the patient appropriately and to ensure that the correct therapies are instituted. At present there is no clear investigation that can determine if a patient has entered a Persistent state of Atrial Fibrillation of a Permanent Atrial Fibrillation state.

AF Fact Sheets endorsed by by endorsed The Heart Rhythm Charity

Sinus Rhythm

Aetiology Paroxysmal Atrial Fibrillation

Author: Dr Matthew Fay, GP Endorsed: Dr Richard Schilling, EP Mrs Jayne Mudd, Arrhythmia Nurse Specialist Published January 2009

For further information contact Atrial Fibrillation Association The Heart Rhythm Charity

Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk

Aspirin

Aspirin works by blocking the action of prostaglandins and thromboxanes (locally active hormones) in the small sticky platelet cells which are initially responsible for binding together to form clots and scabs. Aspirin reduces how effectively these cells bind together and thus reduces clot formation.

Introduction Atrial Fibrillation is the commonest sustained cardiac arrhythmia and if left untreated can lead to stoke and other cardiac issues. It carries a significant cost to individuals through stroke and life affecting symptoms, as well as a financial burden to the National Health Service consuming 1% of the gross NHS budget.

Side Effects and Problems Bruising: As we have discussed above, Aspirin affects the way that the sticky platelet cells work. It is due to this affect that Aspirin has its value to prevent strokes and heart attacks. However it is also due to this action that it causes bruising in some with minimal accidents and also prolonged bleeding if cut or scratched.

Focus on AF - Information for Medical Professionals

Evidence of the use of willow bark as a remedy has been found as long ago as the Sumerian civilisation in 3000BC. In its basic form as salicylate (coming from salix the Latin name for Willow) it irritates the stomach. This natural medicine became of more practical use to a physician when the compound was modified in the 1890s to form acetyl salicylic acid (ASA) which reduced the stomach irritation. Named as Aspirin by the Bayer pharmaceutical company it has been widely used for over 100 years.

Focus on AF - Information for Medical Professionals

and has a low risk of complication. Therefore, although aspirin is not as effective an anticoagulant as warfarin (which reduces stroke risk by at least 40%), in low risk patients the benefits from warfarin are not outweighed by the risks, and so Aspirin is the preferred stroke prevention. For further information see AFA fact sheet ‘Stroke Prevention In AF’.

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Persistent Atrial Fibrillation

Permanent Atrial Fibrillation

Long lasting Persistent Atrial Fibrillation

For further information contact Atrial Fibrillation Association

endorsed by by endorsed The Heart Rhythm Charity

Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk

Affiliated to Arrhythmia Alliance www.heartrhythmcharity.org.uk

Author: Dr Matthew Fay, GP Endorsed by: Professor A John Camm, EP Mrs Jayne Mudd, Arrhythmia Nurse Specialist Published January 2009 endorsed by by endorsed

Trustees: Professor A John Camm, Dr Richard Schilling, Mrs Jayne Mudd, Arrhythmia Nurse Registered Charity No. 1122442

Atrial Fibrillation Association have published a series of single AF Fact Sheets which are available free either to download from the AFA website, or as a paper copy ordered from AFA. There are currently fourteen ‘Patient Friendly’ fact sheets and a further six titles specifically for Medical Professionals. Each title has been approved by a Medical Advisory Committee and endorsed by the Department of Health. AFA hope that both patients and Healthcare staff will find them of help in understanding and explaining AF care.

Warfarin Therapy Introduction Warfarin is an anticoagulant tablet. It is named for the Wisconsin Alumni Research Foundation (WARF), which was involved with its initial development in 1944. It was initially marketed as a pesticide against rats and mice, and is still popular for this purpose. After its introduction it became clear that it was an effective and relatively safe form of prevention of thrombosis and embolism (abnormal formation of blood clots that travel in the circulation and cause problems elsewhere in the body by blocking the artery or vein) in many disorders. It requires active monitoring as its suitable dose varies from person to person. The blood test which is either taken in the normal way or as a finger prick test, checks the INR (International Normalised Ratio). The INR compares how fast blood clots compared to an international standard. Normal blood clots at fast as the international standard so has an INR of 1.

How does it work Warfarin acts on the liver to prevent the formation of the proteins that go on to create fibrin which is the basic component of a clot.

It does this by acting on chemicals produced from the Vitamin K in our diets. As our bodies have stores of these proteins that last a few days warfarin will only start to thin the blood efficiently after a few days. In the same way when you stop warfarin it takes the body a couple of days to replace these proteins and so the blood thinning effect will remain for a few days after you stop. As well as acting on the liver, warfarin is removed from our

bodies by the liver. We are all slightly different in how efficiently our liver removes warfarin as we are all slightly different in age, size and sex, and we all eat different foods, take different medications and drink different amounts of alcohol. This is why the dose of warfarin needs to be tailored to each individual and is also why the dose of warfarin needed can change from time to time, for instance drinking more alcohol when on holiday or taking a course of antibiotics for an infection.

To prevent the risk of stroke in Atrial Fibrillation the blood need to be 2-3 times thinner, so that it takes two to three times longer to clot than the standard and thus has an INR of 2-3. By measuring the INR anticoagulant (warfarin) clinics ensure that your blood is thinned to just the right amount. Too little warfarin (INR<2) wont have the full benefit of preventing strokes, whereas too much warfarin (INR>4) thins the blood too much and can put you at risk of bleeding heavily when you cut yourself and of bruising badly when you fall. When you first start taking warfarin you will attend the anticoagulant clinic frequently as they adjust your dose to suit you. Most people find once they are established on warfarin their INR is pretty stable and they need only attend the clinic every 6-12 weeks.

However you have to watch out for things that can affect your warfarin level to keep it stable. One of these is alcohol. Taking alcohol in itself is not a large problem but changing your average alcohol intake will alter how much warfarin you require.

Another thing you have to watch out for is

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medications including cough remedies, herbal cures and many other over-the-counter medications. In short you are fine to have a couple of paracetamol for a headache but anything else you should seek advice of your doctor or local chemist.

It is important to keep a note of your INR, Warfarin dose and next appointment and this is usually done with the aid of a Yellow Warfarin Therapy book. This book should be taken to each of your clinic appointments.

Side effects

As your warfarin level can change without you realising it, you should take care to avoid cuts and bruises; for instance use a thimble if you are sewing, use an electric razor when shaving, etc. This all can sound a bit daunting but the vast majority of people who take warfarin do so without any problems.

Dosing Warfarin tablets are colour coded to aid in taking them appropriately.

Dose

Colour

0.5mg

White

1mg

Brown

3mg

Blue

5mg

Pink

When taking warfarin you may be asked to take various combinations of tablets: ‘Take 2 browns and a white’ to achieve a dose of 2.5mg’ Or you may be asked to break a tablet in half to achieve a dose: ‘Take half a pink tablet’ to achieve a dose of 2.5mg’ It is important to follow the advice of the clinic to ensure your warfarin is taken at the correct level to ensure your INR is in acceptable range.

Haemorrhage (Bleeding):- Clearly a medication that thins the blood will make you more likely to bleed. Haemorrhage is when you bleed excessively due to the blood being thinned too much. In a well monitored warfarin service this risk should be reduced to less than 1%.

Bruising:- This is caused by suffering small bleeds underneath the skin, if you notice you are bruising without injury then it is advisable that you contact your doctor or the warfarin service caring for you to have your INR assessed.

Diarrhoea:- Warfarin can cause diarrhoea which generally only stops on discontinuing the medication. If this is the case there is an alternative blood thinning agent which may be discussed.

Purple Toe Syndrome:- A rare complication that may occur early during warfarin treatment (usually within 3 to 8 weeks). This condition is thought to result from small deposits of cholesterol breaking loose and flowing into the blood vessels in the skin of the feet, which causes a bluish-purple colour and may be painful. It is typically thought to affect the big toe, but it affects other parts of the feet as well, including the bottom of the foot. The occurrence of purple toe syndrome may require discontinuation of warfarin.

Author: Dr Matthew Fay, GP Endorsed by: Professor A John Camm, EP Mrs Jayne Mudd, Arrhythmia Nurse Specialist

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 13

Questions & Answers: Dr Matthew Fay, GP, helps to answer many of the warfarin questions patients have asked.

How does it work?

Warfarin affects components of the blood which are produced by the liver from Vitamin K. In doing this it affects the way the blood acts to form clots and scabs.

By doing this it assists in stopping clots forming in the atria (hearts upper chamber) in Atrial Fibrillation.

It is the movement of these small clots in Atrial Fibrillation that can lead to strokes.

How is its prescribed?

Many factors can affect how much warfarin the body needs so regular monitoring is required. Dependant on the result of the INR (international normalised ratio) test depends on what dose of warfarin is required.

What can affect my warfarin blood test?

Vitamin K is used by the liver to produce agents that help the blood to clot when there is a cut. Warfarin works to inhibit the use of Vitamin K by the liver, so many items that we eat and drink which can affect the liver function or contain vitamin K can have an effect on your INR levels – such as, food, alcohol and medicines.

When taking any other medication, it is advisable to tell your doctor and your pharmacists that you are also taking warfarin.

Knowing which food sources are high in Vitamin K does not mean that you should stop eating them, but that you would be advised to moderate the amount of these items you eat, and that you try to remain consistent in the frequency of number times that you eat them each week.

A List of some of the foods quite rich in Vitamin K Broccoli Brussel sprouts Coriander

Chives Coleslaw Cucumber

Watercress Asparagus Cabbage Cauliflower Green apples Pistachio nuts Summer Squash Many medications prescribed by your clinician may affect warfarin and if you are on warfarin you should always ensure that your doctor and pharmacist are aware so they can advise you appropriately.

Some herbal remedies such as St John’s Wort can also affect the INR level so it is also recommended that you discuss this with your herbal supplier or the warfarin clinic you attend.

Kale Liver Parsley Spinach Swiss chard Turnip greens

Does warfarin affect my Atrial Fibrillation?

No, warfarin is prescribed to reduce the risks of stroke in Atrial Fibrillation. It does not affect the nature of the rhythm or the rate in Atrial Fibrillation. These medications are called ‘Anti’-arrhythmics (arrhythmia is an abnormal rhythm of the heart).

Does warfarin make my veins more obvious?

No, the blue colour of the veins is due to the blood not containing as much oxygen as it returns to the heart. When blood comes into contact with oxygen it develops its crimson red colour.

Will warfarin make me bruise?

People who take warfarin are more prone to bruising than those who do not take it. If you have been on warfarin for a while and bruising suddenly seems to be getting much worse, the clinic or your doctor should be informed as a further INR test may be required.

What is my risk of bleeding on warfarin?

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If there is a scratch or graze a person taking warfarin will notice they bleed more than when they did not take warfarin. You will need to press on the cut for a little longer than previously.

Statistically, if one hundred people with AF, were taking warfarin for one year, with correct monitoring, only one may suffer from a significant bleeding problem; however, if one hundred patients with AF and at moderate risk of a stroke (aged over 75 years or with high blood pressure) did not take warfarin, then four may have a stroke within a year. This can rise to an expected eighteen patients out of one hundred if they are in the ‘high risk’ category. Hence, warfarin is often prescribed to patients in the moderate risk category as the benefits out weigh its risks.

Does warfarin make you light headed?

Doctors can never say ‘always’ and ‘never’ however there is no clear reason that monitored warfarin would make you feel lightheaded.

Things that affect the blood pressure or heart rhythm usually cause this; warfarin does not do this.

Does warfarin make me tired?

Again this is an ‘Always’ and ‘Never’ situation. It may be said that warfarin ‘thins’ the blood, but this is not really the case. Warfarin affects the way blood clots and does not have any function with the way the blood carries nutrients or oxygen. If you become tired on warfarin you should see your doctor or clinic and discuss the possibility of anaemia (low blood iron level) or problems with your thyroid (our energy level hormone), this second point is even more important if you take the anti-arrhythmic drug Amiodarone.

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Catheter Ablation - your questions answered.

A series of new patient information booklets and Fact Sheets focusing on Catheter Ablation of AF are soon to be published by AFA. Dr Andrew Grace PhD FRCP Consultant Cardiologist at Papworth Hospital, Cambridge, answers some of the frequently asked questions AFA are asked on this treatment.

How can I find out success rates for catheter ablation?

Catheter ablation for a variety of cardiac arrhythmias has now been a routine treatment internationally since the early 1990’s. The ablation of many arrhythmias would be expected to be successful in resolving the underlying cause of the arrhythmia problem. Patients with what is called supra-ventricular tachycardia where they would present with symptoms of a rapid and regular heartbeat should expect success rates with single procedures in excess of 90%.

Consultants providing catheter ablation for this sort of arrhythmia in the United Kingdom would submit their results to a national database although this is a relatively recent development and needs to be improved in terms of the data input before it is widely available for its interpretation by the lay public. Many Consultants will have data of their own that they might be able to share with their patients.

Ablation of Atrial Fibrillation is less likely to be successful than the ablation of supra-ventricular tachycardias - it is a more complex problem. Most Consultants would quote success rates in the range of 50-70% for a single procedure in paroxysmal AF. In many respects these quotes would also be determined by what sort of success the doctor is referring to. If success is to be defined as being entirely

free of symptoms, off drugs and with no evidence on prolonged ECG recordings of any Atrial Fibrillation, then figures around 50% would be regarded as being something that experts who do a lot of these procedures could achieve.

However when success is defined as being a substantial improvement in symptoms and quality of life with maybe just modest drug therapy then figures in the range of 70-80% can be achieved with single procedures – this might provide a very acceptable end-point to the treatment of many patients. With second procedures in the same patient such figures can be significantly boosted and that is why many Consultants offering these treatments in the United Kingdom mention the possibility of a second procedure when consenting you for the initial intervention.

Again there are substantial efforts going on in the professional cardiac electrophysiology community to obtain and collate high quality data that would be available to individuals so that they can use it to help them guide their decisions as to whether to undergo catheter ablation for their AF. The data is being collected nationally but how one defines success is still being discussed amongst colleagues and provides for interesting debate at international meetings.

In essence the harder one looks the more likely one is to find continuing residual Atrial Fibrillation in groups

of patients and of course that might diminish quoted success rates.

The best advice would be to ask the Consultant what their perceived success rate of the ablation procedure would be. Ask them about their recent experience over say the last 12-18 months.

You could ask them if they collate data but of course their most recent data may not have been systematically analysed at the time you meet them in clinic.

My doctor has suggested I go to France for an ablation but I have heard centres are offering them here, can I be referred locally? It would be so much easier.

Michel Haissaguerre and his colleagues working in Bordeaux in the late 1990’s proposed radiofrequency ablation for the treatment of Atrial Fibrillation as a clinically deliverable treatment based on their own groundbreaking clinical work. They have done an enormous amount of the important research in this field in terms of development of both techniques and technologies. This has been not only through their high quality clinical studies but also through their contributions to the devolvement of those techniques to other centres

AFA has published a range of patient information booklets and AF Fact Sheets.

These are available from the AFA website, or in paper form by contacting Jo: 01789 451873 www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 15

internationally through publications and teaching. They remain a very active centre and this group will no doubt be the one being considered.

my own practice I would indicate to patients that some initial bumpiness can be expected but if that does not occur well that is all very good.

In the United Kingdom radiofrequency ablation for AF has also been delivered since the late 1990’s. Initially this was in a small number of centres but has now devolved to many expert centres around the country. The results obtained in general terms are comparable to those obtained in the best centres internationally and therefore it is unnecessary for individuals to travel abroad for their treatment.

The occasional patient gets significant upset to the cardiac rhythm in the immediate period following the ablation procedure. I think if an individual was on their own and got cardiac rhythm problems then they should call the ablation centre responsible for the provision of the treatment in the first instance and speak either to the doctors or the specialist nurses at that institution. If the upset of the rhythm occurs at times that the ablation centre was not easily contactable then it might be necessary to get an immediate opinion from a casualty department or similar. The discharge instructions from the electrophysiology team will cover these issues.

The best thing is to ask your doctor to refer you to an electrophysiology centre in the United Kingdom to be considered for a radio-frequency ablation procedure for your AF.

I live on my own and wondered what to expect for the few weeks after an ablation?

The ablation of Atrial Fibrillation is a major undertaking. In many units in the UK individuals are, however, fit enough and well enough to return to their homes the day following their procedure. Of course the decision to send patients home the next day would be determined by their living conditions and the availability of individuals at home to help them in their recovery from the procedure.

In most patients after the ablation there is little in the way of upset or symptoms. There may be some chest pain which may be exacerbated by respiration almost like a pleurisy. This will usually represent inflammation around the heart which is present under these conditions. Many patients have no symptoms of cardiac arrhythmia after the ablation procedures. In

In general, however, recovery is smooth – you may be more tired and lack energy but as the days go by that should start to increase.

Accordingly in most cases recovery even if living alone should be reasonably straightforward.

I am 67 years old, does this mean I am no longer eligible for catheter ablation?

Radio-frequency ablation procedures for Atrial Fibrillation when they first became available tended to be applied in patients who were younger. There were certainly some concerns that were discussed amongst electrophysiologists that risks were higher in older individuals.

In general age is no longer a bar for catheter ablation of AF and 67 years of age would be regarded as being an entirely reasonable

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age to undergo the procedure. If your symptoms are intrusive then the procedure should be discussed with the relevant Consultant and a mutually agreed decision based on the relative risks and benefit of the procedure should be reached.

I am going to have an ablation and hope to return to work soon, how long should I allow to recover afterwards?

Radio-frequency ablation for AF is a major procedure and in general I would advise that patients take a week away from work after an AF ablation. One reason is convenience, in that the DVLA do not allow driving in the week following any form of radiofrequency ablation procedure.

In addition there will have been a build up to the procedure that can be exhausting of itself and there will be some adjustments of treatment after the procedure again that could all be completed in that week.

The occasional patient will not be able to return to work even after 10 days following a procedure if there has been any significant upset of the cardiac rhythm in the recovery period as mentioned above. That, however, is a relatively infrequent occurrence. I would advise your employer that you intend to return to work in 7-10 days although there will be a small possibility of a delay like any operation.

I am in my middle 70’s and I have been offered a pace and ablate - is this an ablation?

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The definitive treatment of Atrial Fibrillation with radio-frequency ablation would ideally lead to sinus rhythm. However, in those with persistent patterns of AF, that is where the rhythm persists despite previous electrical cardioversion (probably combined with drug therapy) then radio-frequency ablation with the objective of fixing the atrium may not be possible with a reasonable risk and likelihood of success. Under those conditions then the insertion of a cardiac pacemaker and the ablation of the junction between the atrial chambers and the ventricular chambers is an entirely reasonable treatment. This is an ablation but here the objective would be the improvement of symptoms rather than the removal of the fibrillation.

The decision to go down that route would also be based on other considerations such as how quickly the ventricles are being activated in response to the AF and other issues such as whether the patient had coronary disease or problems with the heart’s function.

The treatment has been around since the early 1980’s and was in fact the first type of ablation procedure applied. Under the right conditions in the right patient it can provide an excellent way forward.

I am due to have a catheter ablation in February, what are the chances of it working first time?

Individuals with paroxysmal Atrial Fibrillation, that is where the rhythm comes and goes, then with a single procedure I think it would be reasonable to expect around 50% of patients would be fully resolved of symptoms by the ablation procedure and off suppressive drug treatment.

If you took a more liberal view and regarded ‘working first time’ as being that it stops you having significant attacks and substantially increases your quality of life but you remain on a small dose of anti-arrhythmic drug therapy, for example, then the chance it working first time would be increased to say 70% or even higher.

Bringing the family together for Atrial Fibrillation Understanding AF is difficult and patients often rely on their family and close friends for help and support.

With this in mind AFA has planned fund raising ideas which can be fun for all of the family.

Why not plan an evening with friends, have AF information available for them to take away and drop off at their medical centre, then offer supper or hold a raffle in exchange for a donation towards Atrial Fibrillation Association.

Are you a chocolate connaisour or would like to share an afternoon of fun with your children and grand children? Then why not enter our ‘Choccy Challenge’ on page 21 and raise funds for AFA

Fund Raising Thanks The Kwik Fit Insurance Charity Committee pledged to equal funds raised by AFA member and ex-employee, Jane, and as a result sent £200.00 to AFA!

Omron, who kindly held a ‘Dress Down Day’, shortly followed by a charity ‘Silverstone Sweepstake’ and raised over £300.00 for AFA!

THANK YOU to all members who kindly donated or raised funds for Atrial Fibrillation Association, during 2008. The work of AFA relies on contributions and fund raising, all monies raised go directly to producing information booklets, extending information on the AFA website and distributing information.

AFA would like to give particular thanks to:

Could you make a difference and help fund raise for AFA? The success of the patient information booklets and AF Fact Sheets has lead to increasing requests for copies and further titles. All AFA publications are approved by an AF Medical Committee and endorsed by the Department of Health. In 2009, AFA would like to publish further titles, to make this possible, could you help?

Read more on page 24.

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 17

Freezing rather than burning: What is ‘cryoablation’ and what is its application in Atrial Fibrillation?

By Pipin Kojodjojo and Wyn Davies.

St. Mary’s Hospital, Imperial College Healthcare NHS Trust, London, UK. Atrial Fibrillation (AF) is the most common sustained heart rhythm disorder. With our ever increasing understanding about the mechanisms of AF, an increasing number of treatments have been introduced. Only a decade ago, for the vast majority of patients with symptoms arising from AF (palpitations, shortness of breath, tiredness etc), heart rhythm regulating or heart rate controlling drugs were the only options available.

If these failed, a small group of patients would be offered more drastic treatments such as maze operations which required open heart surgery or ablation of the atrio-ventricular node (the junction box between the upper and lower chambers of the heart) followed by the implantation of a permanent pacemaker that would control the heart’s rate and rhythm in a programmable way.

Catheter based ablation therapies for AF have developed after the publication of a report by a pioneering team of heart rhythm specialists in Bordeaux that in patients with paroxysmal AF (intermittent episodes of AF that come and go; lasting less than 7 days), extra beats (ectopics) occurring singly or in rapid runs originating from the veins that bring oxygenated blood back to the heart from the lungs (pulmonary veins) were the main culprit for starting episodes of AF. Following this, they showed that performing ablation around the pulmonary veins to create a continuous electrical barrier could prevent AF-triggering pulmonary vein ectopy from entering the left atrium and thereby stop AF recurrence in 62% of their patients.

These results became replicated by more electrophysiologists around the world, establishing pulmonary venous isolation (electrically disconnecting the ectopy-generating muscular lining of pulmonary veins from the left atria) as the cornerstone of ablations for paroxysmal AF. In high volume EP centres, approximate 70–80% of paroxysmal AF patients are successfully treated by a single procedure.

“to create a continuous electrical barrier could prevent AF” Particularly during the early days of pulmonary venous isolation, physicians became aware of a unique complication that can arise by delivering radiofrequency ablation (the most common source of energy used in ablation procedures worldwide) in the pulmonary veins – pulmonary venous stenosis. Radio-frequency energy is converted into heat at the tip of ablation catheters which in turn creates a thermal scar at the point of contact with the cardiac tissue.

Such thermal injury allows the creation of the electrical barrier to electrically separate the pulmonary veins from the left atria. However, excessive heating can result in the formation of unnecessary scar tissue which causes the lumen of the pulmonary veins to contract as much as 95% and in a few cases, completely occlude the flow of blood.

Pulmonary veins are an essential limb of the circulation.

The reduction of blood flow in any

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 18

of the 4 pulmonary vein leads to a damming back of blood and increased pressure in the upstream lung lobes. In turn, this leads to symptoms such as breathlessness, chest pain, coughing and haemoptysis (coughing up bloodstained sputum). At times, these symptoms can be more severe than the symptoms of AF! Whilst pulmonary venous stenosis can be treated with balloon angioplasty (a procedure whereby an inflatable balloon is inflated across a narrowed segment of blood vessel), the vessels infrequently re-narrow again, leading to repeated angiogplasties.

In addition, it is unclear what the long term effects of pulmonary stenosis are.

The quest for a safer form of energy that can be used around the junctions of the pulmonary veins and left atria led to the introduction of cryoablation in Atrial Fibrillation. Rather than heating tissue to destroy the underlying cells, cryoablation freezes the tissue (at temperatures as low as -75 °C) in a similarly discrete fashion to destroy the targeted cells. There are several potential benefits of cryoablation compared to radio-frequency energy in AF ablation: the ability of the cryoablation catheter to stick to the surface once ice has formed between the tissue and the catheter tip, allowing for greater stability particularly in areas hard to reach; is less likely to generate microscopic clots (thrombus). Most importantly, cryoablation does not disturb the basic structure of the treated tissue so does not cause perforation of the heart and does not cause pulmonary venous stenosis. The major disadvantage of cryoablation is that each lesion takes 4-5

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minutes to create whereas only 30 seconds of radio-frequency energy is sufficient to make a similar sized lesion.

Therefore, creating point-by-point lesions (4 to 6 mm) using a conventional pointed cryoablation catheter to perform isolation of all 4 pulmonary veins (circumference of each vein approximately 60-80 mm) led to prolonged operation times. To overcome this issue, manufacturers have developed an inflatable balloon which, after inflation, can sit at the junction where each pulmonary vein opens into the left atria. The balloon, in its entirety is chilled to low temperatures thus in theory d e l i v e r i ng an e n circlin g cryoablation lesion around the

mouth of each pulmonary vein (see Figure 1). The introduction of cryo-balloons has significantly shortened procedural times for AF cryoablation. More importantly, several reports have shown in

more than 500 patients, cryoballoon based therapies can prevent paroxysmal AF recurrence in 73% to 86% of patients (see Table 1).

In our practice, a standardised protocol of using cryoablation only (combination of cryo-balloon and pointed conventional cryoablation cath e ter) c a n p re v e n t A F recurrence in 82% of paroxysmal AF patients with a single procedure and operating times of less than 2 hours. These clinical outcomes and procedural times are comparable to more conventional radiofrequency ablation for paroxysmal AF. No pulmonary venous stenosis has been reported when cryotherapy has been used for pulmonary vein isolation. There

however appears to be a higher risk of right phrenic nerve palsy (loss of function to the nerve that produces contraction of the right diaphragm during breathing) when applying cryo-balloon lesions to

the right sided pulmonary veins, which can be avoided by careful monitoring the action of the diaphragm during treatment.

Unfortunately, the results for treating persistent AF (AF lasting for more than 7 days continuously, which can only be stopped by electrical cardioversion) is less satisfactory with 42-64% of patients free from AF. This is probably because this group of patients have more advanced disease in their atria and additional ablations remote from the pulmonary vein ostia are needed to prevent AF recurrence.

The development of cryoablation balloons has allowed cryotherapy to be a realistic and viable choice of energy source for performing AF ablation. It represents an important advance in our pursuit to treat, particularly paroxysmal AF, in a manner that is safe, expedient and with excellent clinical results. [ F ig u re 1 . Left – Illustration showing an inflated cryo-balloon (Arctic Front, CryoCath, USA) in position at the entrance of the left upper pulmonary vein delivering a ring of cryoablation lesions.

Right – X-ray image of an inflated cryoballoon (arrowed) outside the left upper pulmonary vein in a patient with paroxysmal AF undergoing cryoablation.]

Table 1. Results of Cryo balloon therapies for AF Author

Type of AF

Number of patients Klein G et Paroxysmal 21 al. (2008) Van Belle Paroxysmal 141 Y et al.

(2008) Neumann Paroxysmal 293 T et al.

(2008) Persistent 53

Follow up Success period Rates (months) 6 86%

Procedural Times (mins) 165 ± 35

Complications

12

73%

207 ± 79

4 phrenic nerve palsy 8 pericardial effusions

12

12

74 %

42%

170 ± 30

26 phrenic nerve palsy 2 pericardial effusions

3 phrenic nerve palsy

www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 19

Chris Harmer, A Patient’s Journey general hospital. After the usual echocardiogram, holter monitor, ABPM, exercise test, etc, nothing was found and I was pronounced fit and well by the cardiology consultant, but perhaps suffering from stress.

As a child, you assume that most things are normal. When I was frightened at night, I could some times hear my heart beating fast.

Then it would pause, big thump, and beat normally. But I thought that was normal. In my forties, I started to have occasional near-faints, usually at work, some times with loss of vision. I was afraid it was petit mal, and told no-one, not even my wife.

Holidaying in Scotland, my wife and I climbed Ben Nevis: a challenge, but at that time we were well used to mountain walking.

Returning to our car, I sat down and had an awful drifting away sensation accompanied by feelings of dread, fear and panic. It lasted perhaps 20 or 30 seconds, but then kept recurring every few minutes although it eventually subsided after a trip to the Angus Steak House!

“I had diagnosed myself with fifty pounds worth of off-the-shelf electronics” However, the problem began to recur, especially during long walks or following work stress, and it was getting worse as I started to get attacks of a banging with a highly irregular heart rhythm that could last for hours. It was then I realised it was a heart rhythm problem.

I saw my GP, who referred me to the cardiology clinic at the local

However, the problems recurred.

As an electronics engineer by profession, I decided that I had to devise a means of diagnosis myself. I had an athletic heart rate monitor which transmitted cordlessly from its chest electrodes to a monitor on the wrist. Referring to the device’s patent I discovered that the heart rate information was being transmitted by magnetic pulses. I soon realised that I could pick up these pulses using a magnetic coil sensor intended for telephone monitoring which could then be fed to a pocket dictaphone.

Armed with tape recordings of tachycardia and A-fib, I visited my GP who was amazed that I had diagnosed myself with fifty pounds worth of off-the-shelf electronics, and I was re-referred!

The day before my cardiology appointment I was having a particularly stressful day at work, and started my worst ever string of repeating tachycardia events. I struggled home by bus, and went to bed hoping that the problem would ease with relaxation and sleep.

At 4am I woke in panic feeling dreadful, and after an ECG in casualty I was whisked to the cardiac ward on oxygen with a defib pack on the trolley “just in case”. The following day, during ward rounds, I apologised to the consultant that I would not be attending his outpatient clinic that day! I went on Amiodarone, which was at once effective and awful, and put on the waiting list for the then-new EP clinic at the BRI, Bristol.

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 20

“attacks of a banging with a highly irregular heart rhythm that could last for hours” I did not get on with Amiodarone.

Weight gain, visual and skin problems, and finally, when it was starting to “do in” my thyroid, my BRI appointment came through.

The consultant immediately took me off Amiodarone, and I was offered a treatment called “electrophysiological studies”. A few months later, the EP studies resulted in a diagnosis of atypical fast-slow AV node re-entry tachycardia. At that time, it was deemed unsafe to try to ablate a problem within the AV node, but intravenous adenosine would terminate an episode of rapidly re-occurring tachycardia events.

“I regret retiring now as we are increasingly financially challenged, but at the time it seemed the only way out“ So I was sent away with Sotalol to help keep me in sinus. I researched my condition, and became fed up with my six-monthly cardiology clinic appointments where I would be faced with a junior doctor who seemed to know less about my condition than I did. After a shouted “have you been getting any palpitations, Mr Harmer?” I rather despairingly lost patience and discharged myself from the clinic as I felt continuing appointments were a waste of their time and mine.

For 12 years I was purely under GP control, with varying single tachycardia events and bouts of A-fib. I can often stop the A-fib in its tracks by a prompt valsalva manoeuvre, which I was taught by my GP. Work pressure and stress

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I regret retiring now as we are increasingly financially challenged, but at the time it seemed the only way out. And for a time my arrhythmias were, indeed, better.

In 2004 I became involved in local politics, and last year I stood as a district councillor in two elections.

The day before polling day, I came in for lunch after a hard morning’s canvassing, sat in an armchair, felt a tachycardia coming on, shouted

for my wife, and passed out. When I came round, I was in a bad A-fib which lasted for 24 hours. I gave up politics! I also did more research on my arrhythmias, and came across the Arrhythmia Alliance on the web.

I attended the Europe - AF conference in London on 15th June this year, and heard a talk by Tara Meredith, an Arrhythmia Nurse Specialist, on the AF Rapid Access clinic at the John Radcliffe, Oxford.

During tea, Tara confirmed that the JR took patients from my area, and advised that my GP could refer me via the new choose-and-book system.

“What’s wrong with you, Chris? I can’t see anything wrong with you” My GP said no, no, I would have to be referred to the JR from the consultant at the local general hospital, and that referral to the JR was really only for exceptional cases. I suggested he try choose -and-book. He hadn’t used it

CHOCCY CHALLENGE

She then held a quick case conference while I waited, and returned with Dr Tomlinson, an EP, who offered several options for treatment. He was also interested in my novel method of self-diagnosis, particularly its low cost! I am currently being assessed for “pill-in-the-pocket” Flecainide for terminating A-fib, and I am pondering whether or not to take the offer of an ablation for my tachycardia: I am worried by the remote possibility of ending up with a pacemaker. As an electronics engineer I have no trust in electronic devices! But I sense that I will have the ablation in the end.

ANSWER SHEET! Maltesers Starburst Humbug Quality Streets Roses Yorkey Minstrels Galaxy Mars bar Turkish Delight Black Magic Celebrations After 8 Kit Kat Tic Tacs Smarties Twix Buttons (chocolate) Wine gums Mint imperial

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before, but was happy to “give it a go” online. “Here we are – John Radcliffe – electrophysiology - you’re right, I can refer you direct, but I expect it’s a long wait – let’s see – yes, you see, 28 DAYS??? Gosh, I didn’t expect it to be that quick”.

I attended the JR clinic on 28th August, and saw Tara for a very thorough history-taking session which took around an hour.

Do these wear a cross?

Sudden explosion!

Such a noisy critter.

None of your riff-raff living here!

Smelling so sweet Linked to cricket, perhaps?

Will these make number one?

‘To infinity and beyond’, a universe away!

My mum’s local!

An Eastern treat Voodoo!

Birthday parties galore!

Too late for little ones!

Feline equipment!

Noughts and Crosses, almost.

A* students Always on the fence, can never decide!

So fiddly to fasten.

A toothless drink?

Royal herb?

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worsened, I was having more time off with A-fib attacks, and my then manager thought I was “swinging the lead”. “What’s wrong with you, Chris? I can’t see anything wrong with you”. A new, younger manager became a lot more sympathetic when he ended up in cardiology with a persistent arrhythmia which had to be terminated by cardioversion. But the work stress continued, and I was repeatedly turned down for voluntary redundancy as I was “much too valuable a member of the team”. Finally, in 2001 and aged 55, I took early retirement to escape the stress.

Medtronic, Inc., makers of leading ICD, stent, and other medical technologies, announces a new focus on Atrial Fibrillation.

Its recently formed AF Solutions business seeks to provide safer, simpler, effective therapies, such as cryoablation and 3D radio-frequency catheters, to the millions of AF patients that may benefit worldwide.

More details to follow in the next issue... www.atrialfibrillation.org.uk info@atrial-fibrillation.org.uk 21

What is wrong with me?

Liz recalls a ten year struggle.

I was diagnosed with permanent Atrial Fibrillation in November 2005. As I lay in the ward near the nurses’ station so they could monitor me I felt an overwhelming sense of relief. The nightmare for me had ended.

The story really started when I fell off my horse and injured my knees.

After an initial delay in appropriate treatment and conflicting advice, I was left in pain and not eager to face medical professionals again.

be the last time I would ride for several years. The breathing got worse. My life alternated between trying to work, to lying still in bed throughout the day trying to stop the pain. Thinking it was yet another chest cold, I took whisky and lemsip at night but simply woke more tired than the day before, and that’s if I managed to sleep. The pain in my diaphragm was nearly always present and I had pain in my neck and chest. I really needed someone

to go to the doctors to tell them how bad I was, I was just too scared to make a fuss.

I was in hospital for two weeks, and that year I underwent several cardioversions. In the autumn of 2006, one was at last successful.

However, by 2007, I was feeling very ill again. When I went to have an angiogram I was told I was in AF again, and the Consultant said I would just have to manage, I didn’t argue. Thank goodness my GP didn’t agree! He arranged a thyroid test which showed the Amiodarone had upset my thyroid and this had pushed me back into AF.

Finally with another chest cold, I returned to the GP – but this time, I saw someone new to the practice.

He asked me how far I could walk.

I said about to the wall opposite the surgery because I wasn’t very fit. To my total relief he said that it wasn’t a question of being fit, I was ill. He ordered an ECG, a chest X-ray and a consultation with a specialist. He said to go to a certain hospital as the waiting list was

My new GP, who has been fantastic throughout, simply believed in me as a person. He was quick to remind me that late 40s, early 50s, is not old. Without him, I believe I may have died. So now we were off on the cardioversion trail again but this time I was admitted to an Arrhythmia Clinic, where I finally got a dedicated consultant plus specialist nurses who have all

“terrified I would just be dismissed” Throughout the struggle for treatment on my knee, my breathing had been deteriorating and during a trip to Wales, I had severe breathing problems which resulted in a hospital visit and a diagnosis of asthma. My work continued, but I began to blackout.

Back to the GP, and a referral to a heart Consultant. I was uneasy, fearing I was seen as an overweight, whinny middle aged woman, and terrified I would just be dismissed. I had an ECG, which the Practice Nurse said showed a slight abnormality. Further tests and a heart monitor followed, but when I saw the Consultant I was told nothing was found and it was probably the asthma.

By July 2005 I couldn’t really walk across the yard without gasping for breath, and I struggled to get upstairs! I had a permanent pain in my back and couldn’t stand for long.

I was also ‘swelling’ (with fluid as I realised later) which really didn’t do a lot for my view of myself. I was so scared they would tell me I was overweight and unfit and it was my fault that I didn’t make a fuss and just carried on. Riding was hardly an option any longer, I somehow managed one last ride in September 2005 although nearly passed out at the start. In fact, that was to

me being so ill and that I had allowed myself to be intimidated by people who were supposed to be looking after my health.

“I would just have to manage, I didn’t argue” less for the consultation. The ECG was done immediately, as too the blood tests. That evening he telephoned, making sure I would return to the surgery the next morning and only rest before then.

The next day was when I first heard the words, ‘Atrial Fibrillation’.

Suddenly no waiting list, straight to the local Medical Assessment Unit.

The staff were so kind and I felt so relieved I wasn’t just an unfit middle aged woman. That was just before the anger bubbled up, anger I still feel now because no one had taken any notice of

AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 22

been so very helpful. Although an unsuccessful ablation followed, and then a couple of partially successful cardioversions, I have been given enough encouragement to try another ablation some time soon.

Now, I am 51, I think I have had AF for ten years. I work full time, have travelled, written two books, Chaired the local Parish Council and sat on a number of committees. I am resigned to my body, to the Warfarin - which I hate and to the foul taste I have for hours after taking some of the

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many tablets. I find I am still angry - to those who did not see beyond the ‘middle aged lady’, and with those who still don’t recognise my health problems and think I am simply lazy when I have to sleep.

If I don’t sleep, I begin to feel

I wake more tired than when I went to bed. It is both frightening and frustrating.

The future? I haven’t a clue. Will any one ever answer all of my questions?

Should I change my life style? I

“sleep it is like falling down a pit” really tearful, and my brain goes to mush; I can’t think and my words are slurred. When I sleep it is like falling down a pit. Sometimes

choose to carry on, and I do have more confidence in myself - and in dealing with medical professionals.

However, I find walking any

distance very tiring and bending almost impossible as I can’t breath.

I have learned from my young ponies, that taming a wild animal relies on getting their confidence, not on strength - perhaps another lesson learned? However, I too feel that AF has brought with it a form of ‘premature ageing’, without even meaning to you find yourself taking things more slowly, and thinking out how far you have to walk in order to pace yourself, I resent this, and I realise, I am still very angry.

2009 will see AFA working towards raising greater awareness of Atrial Fibrillation through a ‘Know Your Pulse’ campaign. As part of this work we hope to have posters displayed in shops, clubs, libraries colleges... everywhere! Not forgetting hospitals (but not just the cardiology departments) and local medical centres. So if you know ‘just the spot’ please contact AFA and we’ll be delighted to send you a poster or pack of AF materials to hand out.

News from India AFA receives enquiries from patients, carers and clinicians from around the world.

John, a member in India, shares his story: Co-existing Uneasily with AF

In June 2006 I noticed I was breathing with irregularity, so went to a local cardiologist for a checkup. I already had hypertension and was borderline diabetes, now, after tests were carried out, I was diagnosed with Atrial Fibrillation.

Current drugs continued with Warfarin being added to my daily cocktail. Fear of stroke was uppermost in my mind, and constant exhaustion plagued me.

I looked into other options, but in India there is no National Health Service, and private services are prohibitive due to high costs. So, the position for me, and for that matter, anybody in my country, is precarious so far as advanced medical treatment is concerned.

I am 70 years of age, a retired teacher, but as inflation goes up, I hope that some new medical gadget or invasive method cures me of this ailment with the cost being very, very low. Perhaps

that can only be a distant dream.

My physical mobility is slightly compromised now, and each night I sleep with prayers on my lips that there will not be an emergency – this type of care is practically nonexistent or extremely expensive.

I look forward to learning more about Atrial Fibrillation and hope one day to meet a kindred soul with whom I can exchange insights and ideas about this ailment.

John

The AFA moderated Forum offers individuals the opportunity to share experiences with fellow AF patients and carers. It is a friendly and supportive forum which protects the individual’s contact details while enabling contact. Follow the links from the AFA website: www.atrialfibrillation.org.uk . ‘to join’ Alternatively, join AFA at the 2009 AFA Patient Day, Sunday 18th October, further details on page 2.

www.HeartLibrary.com Heart Library is a collection of educational, patient-focused videos about the human heart. The videos illustrate the causes of and treatments for many heart diseases and arrhythmia, including Atrial Fibrillation and Atrial Flutter. Each video is narrated by a physician in everyday language. New videos are added to the site regularly.

Site sponsored by St. Jude Medical

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All money raised will be donated directly to AFA

Registered Charity No. 1122442

Great Balloon Race Ticket Form AFA would like to launch bio-degradable balloons during Arrhythmia Awareness Week (8th-14th June 2009).

The launch would help raise awareness of Atrial Fibrillation, funds raised from the sell of balloons would be used to fund distribution of AFA booklets and Fact Sheets to patients, carers and medical centres.

Please help by selling tickets for balloons, and together awareness, better understanding and improved support will be achieved!

Each balloon will be attached with a numbered ticket (no names/personal information will be printed on the ticket). The balloon ticket returned to AFA from the furthest destination by 12th July 2009 will be declared the winning ticket. Winners will be notified by 1st August 2009.

Only £1.00 per ticket Name

1st Prize, £50.00 M&S voucher to purchaser of winning ticket.

Top seller also wins £50.00 M&S voucher.

Person finding the winning ticket will win £25.00 cash Contact Details Please include email & telephone no

Amount Paid

Ticket to receive information from AFA

Gift Aid Box

Ticket Seller’s name: ________________________________________________________ AFA, PO Box 1219, Chew Magna, Bristol, BS40 8WB 24

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