september 1998 volume 1.2

Volume 6, Issue 2
July 2004
THE NEWSLETTER OF ST.GEORGE’S ICD PATIENT SUPPORT
Meetings of BackUp
On a recent trip to our local chemist I was impressed to discover that I could have my blood pressure checked. Availing myself of the service, I didn’t have to use one of those machines you sometimes see in stations and airports, but rather put myself in the capably trained hands of our usual, friendly pharmacy assistant. More impressive still, she could have checked me over for diabetes if I’d had the time. Wonderful! No holding on the phone, trecking down to the GP’s surgery, queueing and all the other hurdle-jumping I seem to do to get some medical attention locally – just pop in to the chemist, have a friendly Fortunately, I don’t have to go all that often, but I’ve generally found it easier to get an appointment to be seen at the Pacing Clinic than I do at my GP’s. Professor John Camm
Whilst that doesn’t say much about the GP’s practice, it says a hell of a lot talking on the subject of
about the quality and commitment of the Pacing Clinic and the staff supporting it. Although it can sometimes be difficult to get through on the Arrhythmias
phone I’ve never found myself facing long waits for attention and I’ve always found staff considerate and informative. That’s not merely reassuring, it Post Graduate Centre
makes a difference. More and more research is underlining how important back up is for patients with long-term conditions. It’s great that St.George’s has lead the way in providing the kind of support exemplified in the Pacing Clinic’s service and in our BackUp support group. Would that more hospitals nationwide were recognising the value of this kind of support to patient well-being. M A K I N G C O N T A C T W I T H N E W I C D When you first become an ICD patient, as we all know, it’s a blurr, and although some people get the chance to plan for it, it usually happens pretty unexpectedly. To help in the early stages after a new We spend probably less than patient goes home, Sue Jones has agreed to work with us to stationery for the newsletter establish BackUp Volunteer Phone Contacts. These are fellow- and almost none of it on patients, members of BackUp, who will call every new patient at catering for our meetings – home within a month of them having their implant. Contact details the ICD manufacturers, CPI are kept confidential, so the patient doesn’t have to be concerned Guidant and Medtronic have about further contact from the volunteer if he or she doesn’t want it. The idea is to offer a bit of mutual support during a new experience, as well as to explain what BackUp is there for. Our volunteers are Please do continue to give
your annual donations.
selected with care and are trained to make the contacts sensitively You don’t have to be new to make contact with fellow patients, or some of the slack, to help keep the home running, as well as still doing all the stuff you did before. Every patient to have an ICD implanted at
On top of all this the partner is still extremely St.George’s, automatically becomes a
concerned about the long and short-term health member of the BackUp support group -
issues. Is the medication working? Do you have all wherever they come from and, frankly,
the facts? Is anyone trying to shield you from whether they like it or not. Just as
something they don’t think you should know? important, partners and close family also
You are trying to stay strong and be the person they acquire the privilege of membership.
can rely on, the one they can lean on. But you get tired. The physical side of the relationship suffers. Pete Amiss is a partner to one of our newer
This can lead to difficulties in the relationship. members and offers these thoughts on
living with an ICD
Add to all these things the issue of not being able to drive. You have to organize the school run In September 1994 my wife Tina had some kind of gymnastics, football, Brownies and swimming cardiac episode. One minute we were watching TV lessons, shopping at a large supermarket. Trying to the next she was on the floor not breathing. After fit all this in around a full time job. Your own hobbies the drama of giving CPR to someone you love and and pastimes suffer. Going to the gym, playing not having a clue what is wrong or what caused her to collapse begins the long and often frustrating accommodate everyone else. It’s not easy. process of finding a correct diagnosis. The medication saga comes later. Eight years after the first episode came another. Your partner isn’t that interested in partying late into This time it was decided after a very short period of the night anymore. Drinking and medication just time to fit an ICD. Although the staff at St.Georges don’t mix. So even when you do get to go out are fantastic especially Sue Jones, who I cannot together they can’t drive, they can’t drink and they praise highly enough, I did feel I was out of the get tired very quickly. Frustrating or what! Very few people ask you how you are coping with it And it wasn’t until I got my head around what it all. I bet most partners would say “Oh, I’m OK” does and how it works etc., that I began to feel a I hope my relating my experiences will help others to The shock and realization that your loved one has come to terms with living with Cardiomyopathy and a life threatening condition doesn’t sink in for quite a while. You get so wrapped up in going to Pete Amiss
appointments and adjusting your working week around those appointments. It started to sink in for me a few months later when W A N T E D – C O M M I T T E E M E M B E R S I was finally getting around to reading some of the literature provided by the Cardiomyopathy It’s about time us old stagers got shown a thing or two! We need to strengthen the committee I found it very hard to put myself in her position. On team ‘cos the job’s getting bigger and we want the outside they are the same person but they are to increase the amount of support you get out also very different. You think to yourself “come on First off, we need a second editor for the
“It!” “Pull your self together” Like you can have some kind of influence over it. newsletter – needs to be someone who knows a bit about computers, though we’ll give a bit of The beginning is particularly tough. The training. Gud spulling isn ot eessunshull. medication, the tiredness, not driving and the feeling of isolation [that you are the only two people Second, we would like a general committee
dealing with this] all take its toll on you. member, to help us generate ideas and do
While the medication is being adjusted the function of the affected person is affected, sometimes quite Third, we’d love another partner member to
dramatically. Some drugs just don’t agree. increase the focus on partner’s support. Meanwhile you think, “What are these doctors doing? Surely they must know what drugs to use The committee meets with Sue at St.George’s and in what doses.” But it seems everyone is about once every two months and otherwise different. makes contact on the phone or by email. It’s a The general tiredness is a huge factor. The rewarding activity and not too onerous.
children just don’t understand it. They don’t If you’d like to know more, please get in
understand that Mummy is dead on her feet and
touch with Sue Jones at the Pacing Clinic on
020 8725 1372.
Because they are so tired you are trying to pick up E X E R C I S E A F T E R Y O U R I M P L A N T (from our newest committee member, Tina Amiss)
Professor Patrick Doherty gave an excellent talk on exercise at Back-Up's AGM in September last year, one we thought well worth reporting on in this year’s first issue. Patrick is a chartered physiotherapist who works extensively with ICDpatients. His talk was on Following ICD implantation anxiety, depression and a fear of exercise is not uncommon. With regard to exercise the common fear is that of the ICD delivering a shock during exercise.
He talked about structured exercise versus physical activity. Increasing fitness does not have to mean donning a pair of trainers and shelling out on an expensive gym membership. Whatever form of exercise that the individual takes up it is important that it is enjoyable (and therefore sustainable) and fits into the individual's lifestyle. Don't make it your life at the expense of other things eg remaining sociable. Taking up a form of exercise that the individual is used to is helpful as it decreases anxiety. For these reasons walking may be the exercise of choice. However, it may be aerobic exercise of any type eg cycling, stepper, swimming etc.
Exercise should be progressive ie start with a little, that is easily manageable, and gradually build up over time. How hard to exercise, for how long, and how often to exercise is important. With regard to how hard (ie intensity) it is better to listen to our own bodies and how we feel rather than rely on science eg heart rate monitors. How we feel is gauged by rating our perceived exertion on a scale of 0-10, where 0= no effort and 10=maximum effort.(5=moderate effort). Aim for roughly 5- 7 out of 10 (ie not maximum exertion). Other guides to intensity include an increase in heart rate, slight shortness of breath (whilst still being able to talk), and sweating. These are all NORMAL How long - the aim is to gradually increase to 30 minutes. How often - build up to 4 times per week. A warm-up and cool-down period is VERY IMPORTANT pre and post exercise. This is because the heart is more vulnerable to arrythmias at the beginning and end of exercise. A warm-up and cool-down allows for a graduated increase and decrease in heart rate during exercise. A warm-up of 3 minutes and a cool-down of 3-5 minutes is recommended. If these simple guidelines are followed then exercise is safe, and the likelihood of a shock from the ICD, during or after exercise, is no greater than it would be at any other time. The ability to exercise can be increased by 50% in 6-8 weeks, providing that the exercise is kept up. However, stop exercising and two thirds of fitness will be lost in 4 weeks! It is therefore important that exercise is ongoing. As well as an increase in the ability to exercise and do more on a day-to-day basis, an increase in general well-being and self-esteem, and a decrease in anxiety and depression are common with exercise. On a personal note, not only do I feel much better in myself when I exercise but I also feel much more positive about living with an ICD. It is worth remembering that other medical conditions can and do co-exist. Therefore it is always advisable to check with your cardiologist prior to taking up a new exercise regime. Tina Amiss
Committee Who’s Who
Tina Amiss, fitness instructor, whose qualifications for membership are well-documented in her
story described by her husband in the newsletter 0208 900 0684
Martin Byne, a solicitor living near Bath, long-standing ICD pioneer and our most intrepid traveller, can be
contacted at work on 0117 973 1019 and email [email protected]
Stephanie Cruickshank, leading light in sister group for Hypertrophic Cardiomyopathy, is on 020 8668 6673
(home), 020 8725 5914 (work) and email [email protected]
Derek Jones, our new treasurer, lives in Surrey and has a wealth of experience in managing financial affairs.
e Jones, favourite ICD Co-ordinator, is on 020 8725 1372 and [email protected]
Simon Noble, your editor, can be contacted on 01932 349727 or almost anytime on 07766-237312 and email
[email protected]
John Pohorely, nurse and patient, based in Camberley and our latest recruit 01483 898436
Louise Power, chair and committee secretary, tireless and ever-patient supporter lives in North London and
can be contacted on 020 8889 0789
Conference
Charitable
celebrity
Sijbrigje
Inhibitors
Amiodarone
Complementary
Medicine
Diuretics
Warfarin
Exercise
E-mail/internet
Feelings about ICDs
by Dr. Jim Bolton
Histories-
arrhythmia
batteries-
Steph’s
Louise – run down in France
vol 3 issue 3
Improvements in ICDs
by Professor John Camm
Member’s
It’s a boy! – Melanie
Martin (again!)
vol 2 issue 3
On Joining BackUp – John Ellison
Millenium
National ICD Support Group Sue Jones
Partners’ group
by Gill Cockburn
Pensions and Life Insurance “Good News” from Nick Haseman
groups Leicester
Dr.Jane Flint on “Why support”
Zaplife,
Insurance
What if’s/Get it off your chest Can I play golf?
Electrical interference
What will a shock be like?
I’m touching someone when …

Source: http://stgeorges.icd-support.org.uk/docs/a%20ICD%20NEWS%20vol6issue2.pdf