West Dorset ICD Support Group

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Biographies

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Alan Denton, Secretary WDICDSG

 

Hello, I'm Alan Denton, and I am the secretary of West Dorset ICD Support Group. My background is in what used to be called Personnel Management, and I worked for 25 years at Salisbury District Hospital in the Personnel Department. The first indication that I might have a problem was in November 2011, when I passed out early one morning on getting out of bed. My wife called the ambulance, and I was taken to Dorset County and admitted to the cardiac unit, where I first met Juliet Quick (arrhythmia nurse specialist), who was the Ward Sister at the time. Nothing was found, so I was discharged, and it was two years later I had a more serious episode. I was once again admitted to hospital, but this time I was in for almost two weeks, and then discharged once I had an ICD fitted. That's when I met Kay Elliot (arrhythmia nurse specialist). Up until this time I had always thought of myself as a fit and healthy person, so it was quite a shock to find I wasn't quite so invulnerable as I had thought, and it certainly gave me a new perspective on life, and an understanding of living with a health problem which I probably hadn't had until that time, even with my NHS background.

We are lucky to have very good clinical support of all kinds at the hospital, the doctors, nurses and technical staff are excellent. However, I have found that the sharing of experiences with other people in the same boat through the ICD support group to be very valuable to me, and I hope you will find the same for you. I am always happy to talk to anyone between meetings, so please feel free to contact me if you would like to.

 

 


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WEST DORSET ICD SUPPORT GROUP

COMMITTEE MEMBERS

Kay Elliott and Juliet Quick are the two Arrhythmia Nurse Specialists at Dorset County Hospital.  Kay relocated (from Gloucestershire) to beautiful Dorset in 2006 to set up the Arrhythmia nursing service and Juliet joined the service in 2014.  Both Kay and Juliet (Jules) manage the busy Arrhythmia Nursing Service that covers:

  • Atrial Fibrillation clinics (new cases of persistent atrial fibrillation) and follow-up after cardioversion
  • Nurse- Led Direct Current Cardioversion
  • Pre-clerking and post procedure support for those needing Implantable Cardioverter Defibrillators/Cardiac Re-Synchronisation Therapy with Defibrillator (ICD/CRTD
  • Nursing input/review within the ICD clinics
  • Committee members for the ICD Support Group
  • Pre-clerking and follow-up for patients requiring a procedure called ablation
  • Palpitations clinic (for those experiencing palpitations to try and find the cause of these symptoms)

Both arrhythmia nurses cover all aspect of the arrhythmia service but Kay leads on the ICD service and palpitations clinic.  Juliet leads on the atrial fibrillation clinics and cardioversion service.  The arrhythmia service as a whole is led by Dr J Boullin (Electrophysiologist) and over-seen by Jodie Crabb Cardiology Matron.

 

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Tony and Jackie
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Tony Down

WDICDSG Committee member

I have worked in the Horticultural, Arboricultural and Countryside Conservation Field all my working life, predominately in the County of Surrey and mostly on the practical side, so lots of exercise through digging, climbing, chainsaw work and planting etc. In addition I had always been active in my spare time through my hobbies of Judo, Archery, Walking & Allotmenting. I have never smoked or drunk to excess!

My first heart problems occurred in 1990 at the tender age of 36, with light chest pain developing into severe unstable angina over a period of approx 7 days. The cause was a blocked artery which took 12 months and three attempts at angioplasty (no stents available at this time) to sort out under the care of St George's Hospital in London.

Things were then fairly settled with intermittent hiccups and I was once again able to undertake a full range of work and sports activities until 2010 when I started to get breathless during physical activity which slowly got worse. I was then being treated under Frimley Park Hospital and was referred to The Royal Surrey. Tests found an enlarged heart (Dilated Cardiomyopathy) together with an arrhythmia in the bottom heart chambers (Ventricular Tachycardia) and this was treated with the implantation of a Bi-ventricular Pacemaker in 2012 together with a variety of medication. Surgery was needed on two further occasions over the next six months to re-fix two leads that had become dislodged.

Once all fitted and working properly this gave great improvement to the activity levels I was able to achieve.

During 2012 we had bought a home on Portland and a year later decided to take early semi-retirement and move down from Surrey permanently.

At my first cardiac clinic under Dorset County Hospital in 2013 it was recommended that the pacemaker be upgraded to an ICD and this was undertaken the same year. At this time it was considered too risky to remove the old pacemaker leads so new leads were installed for the ICD and I have a spare set in-case I ever need further jump starting!

Unfortunately there has been a slow deterioration of my Heart Failure symptoms, greatly reducing the amount of physical activities I enjoy.

In March 2017 an alarm was triggered in my ICD.  I did not know it had one so it was a bit scary at the time! The alarm indicated that I was having arrhythmia problems in the top heart chambers (Atrial Fibrillation). This was soon treated with anticoagulants followed by a successful cardio-version (Heart stopping and restarting through the ICD) so the AF is currently under control.

 Deterioration of the Heart Failure symptoms has also led to congestion of the heart and liver causing lots of problems with nausea. I have been advised that there is little more that can be done to improve things, so we have to live with what we have and hope things remain stable and do not deteriorate any further too soon.

Everything physical now has to be undertaken slowly and in small chunks. We have just finished landscaping our back garden which has taken 12 months.  A task I would have completed in 4 weeks when fit! It has only been finished thanks to my wife Jackie who has undertaken all the wheelbarrowing and heavy moving. She has been my rock in these difficult years.

Although there have been no silver bullets to cure my problems, I have had excellent care from the NHS on these matters.

I have been a member of the Support Group since 2013 and a committee member from 2016. I have found the Support Group very helpful, especially in the first year after the ICD was installed. It was good to know I was not the only one and useful to hear how other members have a variety of differing symptoms and how they live with them. Also, thanks to the talks and presentations I am far more aware of how an ICD works together with a better  understanding of how the heart functions and what other care and treatment may be available. I also greatly enjoy the social interaction, even though there are so many groans to the questions and answers to my meeting quizzes!


 

Jackie Down

WDICDSG Treasurer

Tony and I have been married for over forty years. We met when he was my supervisor when I started my horticultural training at the Welwyn-Hatfield Council nursery in 1975.  One way of ensuring that sacks of compost would be off loaded from the lorry for me!

Our youngest son was only 14 months old when Tony's heart problems started. Very scary at the time and the drive from Camberley up to the old part of St George's in Tooting was not the best.   But we adapted and Tony's heart settled down with medication and supervision and family life continued with near normality.

I passed my exams but didn't pursue horticulture as a career, but am a very keen amateur. I have an allotment where I grow cut flowers for the house and have had an input into our new garden - when Tony allows me.  I have had a variety of administration based jobs, including being the Parish Clerk for a village in Surrey, Practice Administrator for an Equine Veterinary Surgery near Guildford and am currently working part time as a Receptionist for a local Small Animal Veterinary Practice.

I used to own my own horse but here in Weymouth, apart from gardening and dragging Tony around as many local plant nurseries and garden centres as I can, I have joined the local sports centre where I do a couple of circuit training classes a week plus pilates. I also enjoy walking our terrorist (sorry terrier) Popcorn, bird watching, and we support many of the wonderful and diverse events put on by Dorchester Arts and Arts Reach.

I am looking forward to more wheelbarrowing as we re-model the front garden plus keeping track of Tony's many and varied medical appointments.

I have been Treasurer for only a year and I have found the support given by the ICD Group invaluable as there is always someone that you can talk to and ask for advice from. 

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Sharon Bourgucci - WDICDSG Chairperson 

 

I was born in Canada and moved to England over 40 years ago following completion of my nursing studies and an A&E post- graduate course. Later, I qualified and worked as an Epilepsy Nurse Specialist in a residential school. Leading up to retirement, I spend many years working with Sight and Hearing Impaired adults.

 

As far as I was concerned, I was fit and healthy. During minor knee surgery in 2013, the Anaesthetist noted a heart anomaly. In time, it was discovered that I had Dilated Cardiomyopathy and I required an ICD which was implanted in November 2017.  

 

Within 24 hours, my energy levels began rising to levels I had not seen for decades! It was encouraging but my emotional response was not so healthy. I found it difficult to adjust to my diagnosis and the future in general. I spent time putting my affairs in order by completing and registering both Powers of Attorney, updating my will and organising my funeral. 

 

I was encouraged to join the ICD Support Group....... As I literally walked through the double doors that first time and saw a room full of people all sporting ICDs, a great weight lifted off my shoulders: I was not alone! I have never looked back since that day.

 

I have now been discharged from the Cardiologist's care and only require twice yearly ICD checks, one face to face, the other remotely. I attended the Cardiac Rehabilitation Group in Dorchester then progressed to further twice weekly gym classes in Bridport which has done wonders for my knees as well!

 

I am happy to speak to anyone who is struggling with the decision to go ahead with the implant or struggling post op as most of us have. Life is good.