Cardiomyopathy Australia - Amazon S3€¦ · The Annual General Meeting of Cardiomyopathy Australia will be held on Saturday 31st. August 2013 at the Norman Nock No.2 Lecture Theatre,

Newsletter Number 76 — Spring 2013 Includes selected articles from CMA UK Newsletter

Supporting people with cardiomyopathy and their

families.

Cardiomyopathy Association of Australia Ltd is a not-for-profit registered charity ABN 36 091 171 470

Has Cardiomyopathy

Touched Your Life?

Cardiomyopathy Australia

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AIMS OF THE ASSOCIATION: To provide the opportunity for individuals and their families to share

their experiences and to support one another.

To provide accurate and up-to-date information about Cardiomyopa-thy, when it is available, to members, their families and those in the medical profession.

To increase public awareness of Cardiomyopathy.

To foster medical research in this area.

The views and opinions expressed in this newsletter are those of the authors. They do not neces-sarily represent the views or policies of the Cardiomyopathy Association of Australia Ltd. While every effort is made to check the accuracy of information reproduced in this newsletter, readers are advised to check with the original source before acting on it. Medical details are specific to

each case, and although conditions may appear similar, readers who require more specific infor-mation should consult their Cardiologist.

Any reprints of personal stories in this newsletter need permission from the President or author. Any other articles may be reprinted with an acknowledgment to the

Cardiomyopathy Association of Australia Ltd.

Editorial……………………………………...……….3 President’s Message……………………………. ..4 News from Victoria…………………………………5 News from Tasmania………………………………6 Next Newsletter Highlights & Copy deadlines...6 News from South Australia……………………….7 News from Queensland……………………………8 Young Members’ Group………………………… 9 UNT Research……………………………………..10 HCM Clinic Victoria……………………………11-12 HCM Embryonic Testing…………………………12 Member’s Story……………………………………13 Are you Medicine-wise (Cecilia Peng)………...14 Adverse Effects for ICD patients……………….15 Is Your Medical Device Safe?............................16 Nature Knows What to do! (Anne Abbott)..….17 Medic Alert keeps Australians Safe………..18-19 Dear Doctor………………………………………...20 Heart Foundation Recipe………………………..21 The Best of British ( articles from CMA UK)……22-28 Library details & Newsletter Order form…..…29 Back Page Contact Details……………………...30

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Editorial

E DITORIAL

“Circumstances? I make circumstances!” Napoleon

Margot and John Email [email protected] Phone 07 55269388

.

.

Margot and John

The second edition of Margot Maurice’s book, “Six Months to Live; my cardiomyopathy story of Mind over Medicine,”

Is available now as an Ebook from most well known online Ebook sellers around the world, as well as from the publisher, www.Ebookit.com With the continuing popularity around the world of Ebooks, Margot felt it was the way to go with her second edition. You can purchase it online from your favourite online book retailer such as Amazon, Barnes & Noble or Australian sellers such as Bookworld & Angus & Robertson. @ $6.50 a percentage of which will be donated to Cardiomyopathy Australia. Ebooks can be read on your computer or on an Ebook readers such as a Kindle, Kobo, Ipad or aTablet.

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P resident ‘s & National Executive Report

ATTENTION ALL MEMBERS OF Cardiomyopathy Australia The Annual General Meeting of Cardiomyopathy Australia will be held on Saturday 31st. August 2013 at the Norman Nock No.2 Lecture Theatre, Kolling Building, Royal North Shore Hospital 1 p.m. for 1.30 start. On this occasion, Dr. Gemma Figtree has agreed to talk on “Advanced Cardiac Imaging in the Management of Cardiomyopathy”. Dr. Figtree is an Associate Professor in the University of Sydney and a Consultant Cardiologist at Royal North Shore Hospital.

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Victoria News

H ello from Victoria to all members

Joan Kerr

Tel: (03) 9848 7082

E: [email protected] . Joan Kerr Victoria State Contact (03) 9848 7082 [email protected]

Thank You

Our sincere thanks to our sponsor, Direct Response Aus-tralia (DRA) whose Sydney manager, Wendy Cosgrave and her staff have undertaken the printing, collating and distribution of Printed copies of our Newsletter. Without this much appreciated assistance, our Newsletter simply would not exist in its printed form.

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H i from Tasmania

Unfortunately, I do not have any formal notices of State activities to report but I have some praise for our general population and the support they have given the many Winter activities held throughout the Is-land.

What about this one “The Solstice Nude Swim” held one morning at a Hobart beach in air temperatures of 2 degrees and water temperature of 12 degrees. How tough or crazy are we? What about the “Winter Dark Mofo Light Display “ held during the Arts Festival in Hobart. Many thousands attended this function over several days in freezing weather.

As one of my friends exclaimed at one function “This is magnificent , people just need to get off their butts and enjoy it all”.

I do hope some of our more active members were able to attend some of the many functions held state-wide.

If I can help with any matters please do not hesitate to contact me by email or phone.

Brian Austin,

Tasmanian Contact.

[email protected] or 62296181 or 0437361117.

Tasmania News

Cardiomyopathy Australia Contact us by email [email protected] for all

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HAVE YOU ENROLLED IN THE NATIONAL GENETIC HEART DISEASE REGISTRY If you or a family member have an inherited cardiomyopathy you may be eligible to take part in this Registry We are aiming to enroll every family with an inherited heart disease in Australia, which will assist Australian research groups learn more about these Conditions. More information, including patient information sheets can be found at our website. www.registry.centenary.org.au To get an enrolment pack please contact Dr Jodie Ingles or Laura Yeates. Molecular Cardiology Centenary Institute Locked Bag No 6 Newtown NSW 2042 Phone 02 9565 6185 Wednesday—Friday Email: [email protected]

SA and NT News

H i to all members in SA & NT

Hope you are all well, As per our last newsletter we participated in the Adelaide Heart Foundation Conference on May 16-18 inclusive. With help from Mary Dermis, Margaret Graham, and Alf Poulous the conference was a great success. One initiative was to have interested people provide their email address if they wished to receive more information. Three pages later, we had definitely generated some opportunities. I have followed up and contacted people and have had responses from a few Health Workers for more brochures to give to their patients. Hopefully we will be able to add some new members in the future. On Sunday of June 30 we had an informal Lunch at the Lockley's Hotel. There were 13 of us there in-cluding our new member Bob and his wife Claire, and our other new member Vince. I hope we can be there to support you all. I thought it was a good opportunity to do a quick questionnaire on what our mem-bers wanted from our meetings.

In response to one of the questions: “Did everyone want to have the meetings in one place instead of in a different places each time?” As we had been doing. The answer was a definite yes. We decided that the Burnside library Community Centre will be the place to go as this is the most central to everyone. Our next meeting will be at the Community Centre on Saturday, August 31 with guest speaker Daniel Scandrett-Smith, a Pharmacist from Ashford Hospital. Daniel will be speaking about the medications that we are taking. Hopefully everyone can attend as this it will be an interesting topic that all of us can relate to.

Take Care

Kerry Shaddick

SA/NT contact Phone 08 82707747 Email [email protected]

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Queensland News

H ello from Queensland

Our last meeting was a long and chatty affair, as we had members from far and wide join us, plus some new faces from the Brisbane area. We had members from Townsville and Dalby join us, and it was love-ly to see them all looking so well. Hopefully our usual general discussion helped all our members, both new and old, to know how we are all managing our illness in our different ways, and how we are getting on with our lives, as we all know, it is not only us who are affected with cardiomyopathy, our whole household has to live with it also.

Recently I was reading an old brochure I had come across published by Ansett Australia, that’s how old it is, but I feel these points still apply very much today, and they are as follows:-

Arrive at the airport early to minimize stress

Make sure enough medication is carried in your hand luggage

Keep a separate list of medication with dosage in case the present medications are lost Adjust the timing of medication based on time zones crossed

To wear pressure stockings

Probably everyone knows all this, but it does not hurt to be reminded.

Our next meeting is at 1.15pm. on September 7th at the Toowong Library in the Toowong Shopping Vil-lage free parking is available and everyone is most welcome including carers, supporters and relatives.

‘Til then, take care,

Glennys Govan Ph 07 5537 4950 Email: [email protected]

Are you happy to continue to receive invitations to our quarterly meetings by mail or email? If you find you are never able to attend our quarterly meetings and would therefore rather not receive invitations, please let us know. Just call your State Contact ( see details on each State Contact’s report) or drop a line to the Membership Secretary P.O. Box 273 Hurstbridge, Victoria 3099

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Young Members Group (YMG)

Dear Young Members Group, Until next time, Miranda Hill [email protected]

To read the full article featuring Dr Jodie Ingles and Dr Chris Semsarian go to http://content.onlinejacc.org/article.aspx?articleid=1676135 , Miranda Hill [email protected] Phone 0411 962 946

.

CMAA Young Members’ Group This is an exciting and timely initiative for CMAA to pursue, harnessing the enthusiasm of Miranda and other young members to respond to their special needs and interests. Contact Miranda (details above) to express your interest

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I am a former athlete with multiple world records and Olympic and British Commonwealth gold med-als in middle distance running Now at the age of 74, I have been a heart patient for 4 years and my pre-disposition for ventricular fibrillation during exercise has necessitated implantation of an ICD. How did this happen? My cholesterol was 3.9mM, blood pressure normal and I didn’t smoke. Since my “retirement” from athletics I had engaged in regular physical exercise and regularly competed in a varie-ty of strenuous activities such as orienteering and racquetball. I cycled 12km to work. As an exercise physiologist at the medical school in Dallas I had tested myself on the treadmill every year and had a maximal oxygen uptake well above the average for my age. There were some signs that indicated the problems that were imminent. At the age of 67 I found myself getting breathless during occasional runs at my reg-ular pace of 6min/k and since my expertise is in ex-ercise physiology, I decided that this was caused, not by impaired delivery of oxygen by the cardiovas-cular system, but by detraining of running muscles from a reduction of regular running caused by osteo-arthritis in the knees. Another sign about 3 years later was a bicycle crash on my way to work. Be-cause of the concussion I sustained, I don’t remem-ber anything of the crash or events for sometime after (possibly as much as 15 minutes). When I ar-rived in my office I noted some grazes on my legs and concluded that I must have fallen off my bike and I couldn’t remember actually arriving at work and taking the elevator to my laboratory on the 9th floor. The period between the crash and arriving in my office was erased from my memory. A brain scan at the hospital revealed no damage from the impact causing the concussion, although a cardi-ologlist colleague was suspicious that something else might be going on. About 2 months later just before a check up that my colleague had persuaded me to have, I collapsed on the racquetball court during my weekly game at 6am on Thursdays. My opponent, a kidney special-ist could not feel a pulse and was getting ready to apply cardiopulmonary resuscitation, when I sponta-neously recovered. This scary episode led to imme-diate hospitalization for a series of tests. The first was an echocardiogram in which my ejection frac-

tion (the ratio of the amount of blood pumped with each beat to the amount of blood in the left ventricle just prior to ejection) was 35% compared to the nor-mal value of 70%. The on-call cardiologist observed that I had a weak heart, which was hard to hear giv-en my current level of fitness. Next was a stress echocardiogram in which an echocardiograph is obtained immediately after a treadmill stress test. Unfortunately by the time the technician was able to get a satisfactory image, my heart rate had dropped from 150 to 120 beats/min. However I reached level 3 on the Bruce protocol with no arrhythmia before reaching the age- predicted heart rate of 150 and the treadmill was shut down before the point of ex-haustion. Next was a cardiac catherization to check if there was coronary insufficiency to account for the poor ejection fraction. This seemed to me to be highly unlikely, but I was curious to know what they would find and as expected the coronary vessels were large and clear with some minor narrowing in 1 ar-tery. The final test was a high-resolution MRI of the heart in which the contrasting agent gadolinium is infused to allow visualization of the structures. The images showed a large heart with an ejection fraction of 35%, but the walls of the left ventricle were slightly thicker than normal, reflecting an anatomically strong heart unlike the dilated hearts from CHD, in which the walls are thin. Again no surprise. Endur-ance athletes develop large hearts that are capable of pumping much more blood than normal and the enhanced oxygen delivery make their superior per-formance possible. In fact the term “athletic heart” in years past was used to describe the dilated weak-ened hearts of CHD patients, in which the heart x-ray silhouette looked similar to elite athletes. It turned out that in my case the “weakness”, which was manifested by abnormal wall motion and low ejection fraction, was caused by a small lesion of non-ischaemic origin within the ventricle wall. The best guess for this “idiopathic” condition was a viral attack. Thus my diagnosis was idiopathic, hyper-trophic, non-ischaemic, cardiomyopathy and before I left the hospital I was fitted with an ICD . Continued next page

Cardiomyopathy… Sir Peter Snell’s story

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Medications were prescribed to reduce the work of the heart and prevent arrhythmias - a beta blocker, digoxin and an ACE inhibitor. Later after a series of ICD shocks, again during exercise, the anti-arrhythmic drug amiodarone was added. Now everything made sense; the breathlessness was due to low oxygen delivery from impaired heart function, not peripheral muscle detraining and the bike crash must have been the first episode of ex-ercise-induced syncope. In the weeks following, the law in Texas prohibited me from driving my car and I had to use public transport. I was feeling normal and resumed play-ing racquetball. It wasn’t long before another epi-sode of ventricular fibrillation during racquetball caused a collapse and the first field test of my ICD. When pacing by the ICD fails to prevent tachycar-dia and consequent fibrillation it records the ECG, the energy of the shock and the immediate return of normal sinus rhythm. The data showed a heart rate of 230 beats/min, well over my normal maximal rate of 150. At this rate little blood is pumped and the brain becomes deprived of oxygen. It was now ob-vious that I needed to be aware of and control the intensity of my exercise. Highly competitive activities, such as racquetball, were out and I substituted walking, cycling and ta-ble tennis. To help prevent weakness in my thigh muscles I climbed daily from the basement of my

office building to my lab on the 9th floor, having to rest after 3 or 4 floors. During cycling my heart rate at the point of breath-lessness was 115 beats per min (75% of maximal HR), unbeknown to my electrophysiologist reduced my beta-blocker dose by half. My exercise HR now reached 125 which allowed me to deliver more oxy-gen to the muscles. I was able ride faster and felt better and was able to walk the 8 floors of stairs without stopping. About a year later my ICD shocked me while cy-cling – potentially a dangerous situation. Fortunate-ly I was able to recognized the symptoms of dizzi-ness, quickly stop, and roll off my bike onto the side of the street. A few seconds later, while still con-scious, I received the rhythm-converting shock, gathered myself for a few minutes and feeling bet-ter carefully resumed my journey without further incident. There were more episodes including an instance when the familiar dizziness occurred while cycling. This time however, the first shock was ineffective and after the 2nd shock passed out and received a 3rd shock – an ICD “storm”. I went into hospital for an infusion of amioderone and promised my cardiologist that I would take my meds as prescribed. #

Three-time Olympic champion and world record-holder, Peter Snell is one of New Zealand's greatest sports achievers, and some say the greatest. He was little-known outside of Auckland when he went to the Rome Olympics in 1960 but he became an instant national celebrity when he won the 800 metres, an hour before training partner Murray Halberg also won Olympic gold. Both were coached by Arthur Lydiard. Two years later, Snell set a world mile record in Wanganui and a week later set new world marks in Christ-church for the 800 metres and 880 yards. Later the same year, he won the mile and 880 yards at the British Empire and Commonwealth Games in Perth, but was eliminated in the heats of the 4×440 yards relay (with Barry Robinson, Dave Norris, and the non-Olympian Gary Philpott). In 1964, he successfully defended his Olympic 800 metres title and won the 1500 metres as well. In November 1964, he set world records for the 1000 metres and the mile and retired in 1965. Snell moved to live in the United States in the 70s where he gained a doctorate and he has been director of the Human Performance Centre at the University of Texas since 1990. Snell in 2000 was voted New Zealand's Sports Champion of the 20th Century. He was made a knight companion of the New Zealand Order of Merit in 2001 and is now known as Sir Peter Snell. #

Cardiomyopathy..Sir Peter Snell’s story

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What is left ventricular noncompaction?

Left ventricular noncompaction is a disease of the heart muscle that has only recently been described. Left ventricular noncompaction can occur on its own (i.e. isolated) or along with other heart problems (i.e. congenital heart disease) and is characterised by deep trabeculations (finger-like projections) in the mus-cle wall of the left ventricle. These trabeculations can also occur in the right ventricle. The heart muscle abnormalities occur during the development of the heart in the embryo. Symptoms of the disease are variable; with some patients having no symptoms while others may develop shortness of breath, palpita-tions, chest pain, dizziness and fainting episodes. Occasionally the disease can cause heart failure, stroke (due to blood clots forming in the trabeculations then travelling to the brain) or sudden death

Left Ventricular Noncompaction Cardiomyopathy

It is not known how common left ventricular noncompaction is, although it is suspected to be relatively rare. There are generally two ages of presentation. The most common is during the first few years of life while other patients do not notice symptoms until adulthood. It is very important that everyone with a family history of left ventricular noncompaction be seen by a cardiologist for testing. What causes isolated left ventricular noncompaction? In many instances, left ventricular noncompaction is caused by abnormalities in our genes. Our body is made up of millions of cells. There are many different types of cells, including brain cells, liver cells and heart cells to name a few. Each cell contains 46 chromosomes, which hold the genetic material that de-cides features such as the colour of our eyes and whether we are tall or short. These 46 chromosomes are grouped into 23 pairs, one of each pair coming from mum and the other from dad. One of these pairs is known as the sex chromosomes, and these decide whether we are male or female. A female has two X chromosomes (XX) while a male has an X and a Y (XY). Continued next page…….

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If you imagine a chromosome as being like a ball of wool, you could stretch it out into one long strand, which is known as the DNA. Along the length of DNA there are regions called genes. As there are two copies of every chromosome, there are also two copies of every gene (as mentioned, one from each parent). Genes act as recipes to make certain things (proteins) in the body. If there is a mistake in one of these genes it may lead to the development of disease. This mistake is known as a gene alteration, and such mutations may be responsible for left ventricular noncompaction. How is left ventricular noncompaction inherited? Families with left ventricular noncompaction (LVNC) have been shown to pass the disease on in two different ways, via autosomal dominant or x-linked inheritance. Autosomal Dominant Inheritance: This means that an affected person has a 1 in 2 (50%) chance of passing the gene alteration on to children and males and females are affected equally. Most inherited heart diseases are passed on in this fashion. X-Linked Inheritance: This type of inheritance has so far only been observed in a small group of pa-tients who develop left ventricular noncompaction during childhood. In this case the gene alteration ex-ists in a gene located on the X chromosome (sex chromosomes determine gender, i.e. females XX, males XY). Therefore, a father with left ventricular noncompaction has a 100% chance of passing the gene alteration on to his daughters but no chance of passing it on to his sons. Alternatively, an affected mother has a 50% chance of passing the gene alteration on to both daughters and sons. A female who inherits the gene alteration may have less chance of actually developing the disease (i.e. may never deRarely, a person may be the first in the family to have the mutation. In this case, brothers and sisters of that person are not

likely to develop the disease, however children of the affected person are at risk of inheriting the gene mutation.

Rarely, a person may be the first in the family to have the mutation. In this case, brothers and sisters of that person are not likely to develop the disease, however children of the affected person are at risk of inheriting the gene mutation. Continued next page…….

LVNC continued

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What is genetic testing? Genetic testing involves looking for a mistake in the genes known to cause left ventricular noncompaction. At present, less than five genes have been identified to cause this disease and these genes are poorly understood. The Agnes Ginges Centre for Molecular Cardiology, Sydney is carrying out research to both identify gene mutations in patients with left ventricular noncompaction and to understand how these gene abnormalities cause heart disease. In addition to the genetic studies, clinical and family information is also being collected to help understand moreabout this disease. If you would like to take part in this research program or would like more information, please call Ms Laura Yeates, Cardiovascular Genetics Research Coordinator (Ph: 02 95656187 or email: [email protected]). Will a diagnosis of left ventricular noncompaction change my lifestyle? Relatively little is known about the clinical aspects of left ventricular noncompaction. Based on the limited available information on this condition, following are some of the Do’s and Don’ts that we advise people when they are diagnosed with left ventricular noncompaction.

Avoid competitive sports. Competitive sports include those that require significant exertion, for exam-ple: Touch football, Basketball, Netball, Squash, running and even social games that you may not think are too strenuous. We recommend people avoid competitive sports because it may be associated with severe cardiac symptoms and possible sudden death.

Regular light exercise. It is important to maintain a healthy lifestyle. Regular light exercise such as walking is not only good for your heart, but also good for your general health. Regular check-ups with your cardiologist. It is important to monitor the progression of the disease, and you should also report any new symptoms. Surgical procedures: You should inform the attending doctor of your condition before any surgical/dental procedures. Consult with your GP or cardiologist before taking any new medications. It is important to talk to your doctor before taking any new medications, including alternative medications obtained from the ‘healing arts’ eg. herbal remedies. Encourage relatives to be screened. As mentioned, siblings and children of an affected person are

at risk of also being affected. Screening of relatives involves them seeing a cardiologist where they will have a physical examination, an ECG, an echocardiogram (ultrasound of the heart) and possibly a magnetic resonance imaging (MRI) scan. The Genetic Heart Disease Clinic held at the Sydney Heart Centre, RPAH, is always available for the screening of relatives (Ph: 02 9517 2011).

The Agnes Ginges Centre for Molecular Cardiology carries out important research on left ventricular noncompaction and

sudden cardiac death. Any donations towards this research would be gratefully received. Please contact Prof Christopher

Semsarian if you would like to know more.

If you have any further questions, please contact:

Ms Laura Yeates

Professor Christopher Semsarian

The Agnes Ginges Centre for Molecular Cardiology

Centenary Institute, Locked Bag No. 6 Newtown NSW 2042

Phone- (02) 9565 6187 Fax: (02) 9565 6217

Email- [email protected]

Email- [email protected]

Follow our research on TWITTER @CSHeartResearch

Australian Genetic Heart Disease Registry www.heartregistry.org.au Cardiomyopathy Australia wishes to thank all of the above for their kind permission to use this important information for the benefit of all members

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Our sincere thanks to members who have sent their appreciation of recent newsletters. It is re-ally great to know that you are gaining infor-mation from our newsletters as that’s what it’s all about. Here are some examples of what has been sent…….. Thank you Margot and John…. wonderful newslet-

ters and I always get a lot out of them, as do our

patients.

Margaret (nurse) Canberra

To all involved with the Newsletter:

Many thanks for another very informative and in-

teresting newsletter, There must be so much in-

volved in researching, collating etc; I have no

doubt you are already thinking about the next

one.

As a result of my HOCM, I’ve lost the sight in my

left eye, so I have a love/hate relationship with

my computer. Receiving the newsletter online

means I can read the general content but print

the articles of most interest to me and most rele-

vant to my situation. An ideal arrangement and

much more economical. Thank you.

My next challenge is to get a copy of Margot’s

book—I’ll enlist help from a more savvy member

of the family!

Thanks again for the help and encouragement

and please know that your hard work is appreci-

ated.

Alison ( NSW)

I have been in touch with Alison to let her know

that when she gets a copy of my book she will be

able to increase the size of the type if she has an

Ebook reader. I don’t need my reading glasses

when reading on my Kindle as I choose which size

type I want. If Alison decides to read the book as

a PDF on her computer she can also increase the

type size.

Happy reading Alison

Cheers

Margot

When any of us are given the news that we have a cardi-omyopathy (CM), we just don’t know what to do, what to tell our families and what it all means for our future. It is now nearly thirty years since I was told I had cardio-myopathy and the usual prognosis in those days was either “ You can drop dead any minute,” or as was in my case “ go home and get your affairs in order as you won’t

last more than six months.”

Many people with a chronic illness can see no positives in the first instance but believe me as time progresses we usually console ourselves with the fact that “ it could have been worse.” We all live varying lengths of time whatever our health situation is… none of us really knows when it is our time to leave this life but it certainly doesn’t help ourselves or those around us to dwell on this fact. Live every day as it comes and particularly as you reach your senior years (and many of you will) even with cardiomyopathy as diagnostic techniques are contin-ually improving, medication, is readily available and im-proving so as I often say to CM folk, “ If there’s ever a good time to contract CM, it is now”… believe me. When I was diagnosed there was very little medication suitable for CM and what there was had so many side effects there were times when you felt you couldn’t continue with it. But then the reality hits and you ask yourself “ what is the alternative?” So we all persevere and gradually get used to this new life. So what are the positives? If you’ve live in the same place since you were first diag-nosed, you will be on first name basis with your pharma-cist, your doctor’s receptionist and your friends will al-ways keep in touch to see how you are unless of course you’ve bored them senseless with your complaining and blow by blow details of your illness, so watch out for that one. Eventually your life will carry on in a ‘new’ normality and there will be days when you actually forget you have CM. Now if you’ve moved around as we have in the time I’ve had CM, you have widened all the range of people I have mentioned above. Make your CM your hobby or main interest and learn everything you can about it. Knowledge is power. When or if you are hospitalised along the way, you are always an interesting patient because not everyone has CM. Newly qualified doctors and nurses are interested in your story as they learn a lot from chronic illness pa-tients, particularly those with CM and knowledge of their condition. They enjoy speaking with those with a happy although ‘sometimes’ tired smile on their face. CM people are usually told, “ You don’t look like a cardi-ac patient.” So remember to take every day as it comes and each day when you wake up look in the mirror, smile at your reflection and say to yourself, “ I told you so… we’re still here and winning.” #

Letters to the Editors

The Positives of Chronic Illness……By Margot Maurice

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We have had quite a few enquiries lately about reg-ulations for driving if one has cardiomyopathy. A couple of years ago when the new legislation came into being we ran full particulars in the news-letter. Rather than repeat the large document we present-ed then, we have given the link for members to check out this government paper and suggest you be aware of the consequences of not seeing your GP to get a medical certificate stating you are fit to drive. No certificate—no driving otherwise no insur-ance for you or anyone else who might have an injury from being a passenger in yours or the other driver’s cars. An accident will cost you big money. It is vital that you read the full paper on the require-ments but check the index and you can then go to the correct part instead of having to plough through a lot of unnecessary reading. There is no point in stating that you are a careful driver because there many out there driving who are not careful and could cause you to have an accident. The misconception is, if you have cardiomyopathy, you can’t drive but this is not correct. You can drive as long as you carry your medical certificate. If your GP tells you that you are well enough to drive PLEASE tell him you want a letter to that affect and forward it to the State Motor Registry who will then send you a certificate for the doctor to complete. If the doctor does not act in this responsible manner he can held in breach of the act and that will cost him a lot of money. Summarised below are the new standards relating to cardiomyopathy. For more information about the standards, the full document can be downloaded from www.austroads.com.au You can also order a hard copy from this website. What about your reporting responsibilities? In ALL STATES AND TERRITORIES it is the re-sponsibility of drivers to inform the licensing au-thority if they have a long term or permanent health condition that is likely to affect their driving ability. In addition, in some states (namely South Australia and the Northern Territory) health professionals are required to make a direct report to the licensing authority if a patient is diagnosed with a condition that may affect their fitness to drive (this is called

mandatory reporting). In previous CMAA newsletters we have drawn members' attention to the fact that the medical standards impose licensing restrictions for various heart conditions and that people with cardiomyo-pathy for example should discuss with their doctor the impact of their condition on their ability to drive safely We have been aware that some CMAA members have been irritated by these requirements and so may have decided not to report to the licencing au-thority. Many people do not realize the implications of not reporting. There are for example heavy fines, and if you have a car accident and it becomes ap-parent that you have a chronic health condition that affects your driving and you have not reported it, your insurance may not be valid. The reporting requirements are not dictated by the medical standards but reflect road safety legisla-tion in the individual states and territories. These laws are summarized in the Appendix 3 in the standards for easy reference. Your medical pro-fessional will be aware of these requirements so PLEASE check with them and ensure that you have fulfilled the necessary reporting requirements and that you have fulfilled the requirements for a conditional licence. Remember, the medical standards and the road safety legislation is designed to make sure you are safe on the road. Conditional Licences are de-signed to make sure your medical condition is mon-itored regularly so that you can remain independent for as long as possible. Remember go to www.austroads.com.au. If you do not use a computer ask a friend or relative to checkout the website for you and print you a copy of the paper. You can also phone the De-partment and order a hard copy from this web-site.#

To those with cardiomyopathy….Have you been checked by your GP for your ability to Drive a Car. An important reminder to all members both old and new.

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An overactive enzyme is behind a leaky calcium channel that plays a role in the development of atri-al fibrillation, which is the most common cardiac arrhythmia that is responsible for a third of all strokes. However, it doesn't act alone, say re-searchers at Baylor College of Medicine. The find-ings can be found online in the current edition of the Journal of Clinical Investigation.

"When the heart pumps properly, the muscle con-tractions are regulated by waves of calcium. When the heart relaxes, the calcium is stored; when the heart contracts, it is released," said Dr Xander Wehrens, assistant professor of molecular physiol-ogy and biophysics, and cardiology at BCM. "In atrial fibrillation, the calcium is released too early. As it leaks out, the heart beats too fast and irregu-larly."

Researchers knew that an enzyme called calmodu-lin kinase II is overactive in several heart diseases and believed it played a role in the leaky channels – a tiny pore that controls release of calciu through the cell's membrane. In the current study, Wehrens and colleagues were able to show in mouse mod-els that if this enzyme is inhibited, calcium chan-nels normalize and atrial fibrillation is prevented.

To determine if the calcium leak alone was enough to set off atrial fibrillation, researchers bred a mouse with a specific genetic mutation in the calci-um channel, making it prone to leaks.

"The mice were fine. They did not develop atrial fibrillation despite the leak," Wehrens said. "There had to be another factor that contributed to arrhyth-mias."

Wehrens said they discovered that a sudden in-crease in heart rate is a very specific activator of calmodulin kinase II. The research team found that mice with the mutation were more prone to atrial fibrillation after their heart rate was sped up, acti-vating the enzyme. Mice that lacked the mutation did not suffer from arrhythmias despite having the enzyme activated. From that they surmised that the enzyme alone did not lead to atrial fibrillation.

When they used a drug to block activity calmodulin kinase II, and the mices' heart rates were raised, the mice with the calcium channel mutation had no signs of arrhythmia. Again the results further sup-ported the conclusion that the enzyme does play a role in the disorder but does not act alone.

"It's a synergy. The models had to have a preexist-ing problem on top of overactive calmodulin kinase II," Wehrens said. "If you don't have the mutation and the enzyme, but only one or the other, then you don't develop the arrhythmia."

Since calmodulin kinase II is important to many other functions in the heart, blocking it all together is not a realistic treatment. Instead, they were able to make a change to one amino acid in the genetic code and stop the specific calcium channel from being affected by the enzyme. Further studies with similar models showed this as an effective treat-ment.

"More trials are needed, but this is a promising way to target one regulatory event that contributes to atrial fibrillation," Wehrens said. "These findings could lead to new drug therapies for arrhythmias and better patient care”.

Source:

Baylor College of Medicine Houston USA

Enzyme doesn't act alone in atrial fibrillation

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Please send or email your Dear Doctor questions to Margot & John soon for inclusion in our next issue. Ph: 07 5526 9388 Email: [email protected]

Question: I have Idiopathic Dilated Cardiomyopathy (IDCM) probably Familial Dilated Cardiomyopathy (FDCM) with Left Bundle Branch Block (LBBB), I went to have a Ventillation or Breathing Stress test (VO2 test )today. The centre refused to do it as the risk of going into Ventricular Tachycardia / Ventricular Fibrilla-tion (VT/VF) and this not being able to be interpreted on the ECG because of the wide QRS. Interval( QRS complex is the electrical sign showing on an electrocardiogram (ECG ) representing the muscle contraction)

What other test cannot be interpreted due to the LBBB? What test could put me at such risk??

Answer: A left bundle branch block is an abnormality in the way the “electricity” passes through the heart and causes contraction. Within the ventricle or pump chamber, there are two bundle branches which effec-tively work as wires. If one of them doesn't conduct or is "blocked", a bundle branch block, either left or right develops or is seen on the ECG. A routine stress test relies on interpretation of the ECG and the presence of a left bundle branch block makes this impossible. Therefore the presence of ischaemia or signs that the heart is not getting enough blood are not able to be detected. A left bundle branch block can also make interpretation of a nuclear stress test difficult and at times even an echocardiogram is more difficult to interpret because of the abnormal electrical conduction. It is important to say that some people have a left bundle branch block present from birth which may not reflect a problem with the heart.

Dear Doctor……...

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Roast pumpkin, carrot and chickpea salad This salad can also be served as a side dish or as a vegetarian main meal. Just add 100g piece fresh ricotta per serve to boost the protein and serve with wholegrain bread. Serves 4-6 as side dish Cooking time: 30-35 minutes Ingredients Olive oil spray* 1kg butternut pumpkin, deseeded, peeled and cut into 2cm pieces 1 large bunch baby carrots, washed and ends trimmed 2 tsp ground cumin 1 tsp sweet paprika 3 tsp honey 400g can no added salt chickpeas, rinsed and drained* 2 tbs olive oil* 1 tbs red wine vinegar 100g baby spinach leaves 4 green onions, chopped Cracked black pepper, to season *Products available with the Heart Foundation Tick. Instructions

1. Preheat oven to 250°C (230°C fan-forced). Lightly grease a large roasting pan with cooking spray.

2. 3. Arrange the pumpkin and carrots over the base of the pan. Sprinkle over the cumin and paprika then drizzle with the honey and spray with olive oil. Toss so all the vegetables are well coated.

4. 5. Roast, turning vegetables once, for 25-30 minutes, turning once until golden. Add the chickpeas and roast a further 5-8 minutes until pumpkin is a little more golden. Remove from the heat and set aside to cool about 10 minutes.

6. 7. Meanwhile, whisk the olive oil and vinegar together then drizzle over the vegetables. Add the spinach and green onions and toss gently to combine. Season with freshly black pepper and serve with lean chicken, beef, fish or pork.

8.. Tip You can replace the baby carrots with about 500g regular carrots, they will need to be peeled and cut into pieces the same size as the pumpkin.

Recipe and image reproduced with permission. © 2013 National Heart Foundation of Australia. For other healthier reci-pe ideas, visit www.heartfoundation.org.au/recipes or phone 1300 36 27 87.

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The Best of British These articles in this section of the CMAA Newsletter are ex-cerpts from the CMA UK Newsletter and are used with permis-sion from the CMA UK. We wish to thank CMA UK for their co-operation. The CMA UK wishes to acknowledge the continuing support of the British Heart Foundation

P regnancy is an issue for wom-en with heart problems. In the

past many women with conditions such as cardiomyopathy might have been told it is not safe for them to have babies. But we now know that many such women can have their babies safely if hey receive high-quality specialist care. In Part 1 of my article I looked at the risk of a pregnancy, the circula-tory changes that occur in pregnan-cy, how they impact on the heart and outcomes for mother and baby. In this article I am looking at the underlying cardiomyopathy and how it impacts on pregnancy imme-diately and long term. Pregnancy in women with hyper-trophic cardiomyopathy With a thickened heart muscle, thickening can vary in distribution and severity. If you have heart muscle thicken-ing, the heart muscle is stiffer than normal although the contraction of the muscle is good. If the heart muscle is thick, it can obstruct the blood flow leaving the heart and this can lead to symptoms such as chest pain, breathlessness and blackouts. You may also have prob-lems with the electrical conduction system and get heart rhythm prob-lems ( arrhythmias). If you already have symptoms of breathlessness and chest pain, they are likely to get worse when you are pregnant, mainly because the de-mand and workload on the heart is increasing. If you have arrhythmias they may worsen. But most of these problems and symptoms can be

controlled with medicines. I use be-tablockers a lot and they are safe in pregnancy. Symptoms of breath-lessness tend to respond to small doses of diuretic. If you do not suffer with arrhythmi-as but have an ICD or a pacemaker we will use aspirin as a mild blood thinner during pregnancy to prevent clots forming on the leads of the devices. If, however, you have ar-rhythmias we use a more potent blood thinner in the form of low mo-lecular weight heparin injections as pregnancy encourages blood clots. Low molecular weight heparin is is safe and it doesn’t affect the baby but you have to inject yourself twice a day for the whole nine months. What to expect in pregnancy Usually your antenatal care is nor-mal and you will have obstetric re-views like any other mother. But you will have more frequent cardiol-ogy reviews—about every four to eight weeks. A lot depends on whether the heart muscle thickness is severe or mild, the more severe the problems, the more frequently you will have to be seen. We sometimes do echos but not routinely in HCM but would perform one if somebody has significant symptoms or is not responding to treatment. If you start to get more palpitations, we might also check the ICD just to make sure it is not just the normal fast heart beat of pregnancy and there’s no thythm issues. The majority of women with HCM will have a normal vaginal delivery at full term. There is still a tendency for many cardiologists to

think that Caesarean section is saf-er for women with a heart problem but it’s not. Caesarean section is associated with more bleeding, in-creased infection, epidurals and general anaesthesia and you have to balance those risks. If you have a pacemakeror ICD and are to have your baby in Lon-don, we recommend a planned in-duction for a vaginal delivery and have technicians available who can programme the device if needed. This is because during a C-section diathermy, a surgical technique us-ing heat, is used and this can inter-fere with devices. Complications There is a low risk of complications if you have: mild heart muscle thickening no or little obstruction to

blood outflow from your heart only a slight leak from your

mitral valve no arrhythmia or well con-

trolled arrhythmias do well on an exercise test If you can manage more than six minutes on a treadmill or you achieve more than 60% predicted on a VO2 cardio-pulmonary exer-cise test, you are likely to cope with being pregnant. If you have severe thickening of the heart muscle, severe obstruc-tion to the blood flow our of the heart, your mitral valve is severely leaky, your arrhythmias are not properly controlled and your Go to next page

Pregnancy care for women with cardiomyopathy Dr Fiona Walker I consultant cardiologist with the pregnancy service Heart Hospital, London. Part 2 of a two-part article

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exercise test is not good, you will find pregnancy very difficult and there’s a high chance of complica-tions. In our experience at the Heart Hospital ( reasonable numbers for a single centre), we found that symptoms of breathlessness and arrhythmias tend to worsen if pre-sent beforehand and some patients developed heart failure ( fluid con-gestion on the chest) if experi-enced before. Around 60% of women in our service delivered vaginally, mainly because with a first-time baby, trying to undice la-bour a bit early ( 38 weeks) has a 50% chance of achieving normal and therefore 50% end up with Caesarean section. Elective Cae-sarean sections were mainly for obstetric purposes. Previous data from St George’s Hospital showed similar re-sults.Patients ecame more breath-less, they sometimes got palpita-tions and chest pain and symptoms did tend to worsen, but less than 10% of wpomen had serious symp-toms. There were no deaths and there have een none in our care at the Heart Hospital so far. Pregnancy in women with dilat-ed cardiomyopathy (DCM) This type of cardiomyopathy is different because the heart muscle chambers are not thick, but dilated and enlarged and there’s some degree of scarring of the heart muscle. The contraction is not so good and often the conduction sys-rem of the eart is onvolved as well. Again, this is a genetic disorder. Patients may have breathless-ness and palpitations, they may get tired on exercise and they may ex-perience chest pains. In pregnancy the increased work-

load, increased volume and in-creased stretch on the heart is go-ing to increase breathlessness. Arrythmias (heart rhythm prob-lems) may get worse and ventricu-lar function can decline and this is the main worry. The tablets you usually take if you have DCM are ACE inhibitors, such s ramipril and you cannot take them when pregnant. They are associated with severe compli-cations for the baby including intra-uterine death and kidey roblems. So you need to stop these before ever considering conceiving. After stopping the ACE inhibitors we always re-echo to make sure there’s been no change in pump function as a consequence of stop-ping the ACE inhibitors. We use betablockers again this time to reduce the heart’s work. These drugs reduce heart rate and heart’s oxygen consumption. We use the diuretic furosemide if peo-ple are breathless, aspirin as a mild blood thinner if there’s no ar-rhythmias and we use low molecu-lar weight heparin injections if you have arrhythmias or significant en-largement of any of the pumping chambers. What to expect in pregnancy? You will have your antenatal care as normal. You will have cardiology reviews more frequently ( every four to six weeks) and an echo every visit. Again, we try to deliver women vaginally and we would consider an early delivery if we saw a change in ventricular func-tion. Complications Complications are far more difficult to predict in DCM, In fact the im-pact of pregnancy is very unpredi-

catable. I’ve cared for women with familial dilated cardiomyopathy (FDCM) and completely normal pumpy function at the start of a pregnancy, whose ventricular func-tion has taken a significant down-turn as a consequence of pregnan-cy. But I’ve also looked after wom-en with poor function at the start of pregnancy and function has re-mained stable surin pregnancy. But as a general rule, if your pump function is good before pregnancy, this is better than if it’s impaired before. There is some data about preg-nancy in DCM. In one study that came out in 2010 they graded mothers depending on their base-line function. They found arrhythmi-as may worsen, heart failure and fluid congestion can be provoked and thromboembolism can occur. This study also suggested that there was some detriment to long-term outcome. But the numbers were very small, only 36 pregnan-cies, so it’s very difficult to be sure if long-term outcome is truly affect-ed. The babies ere also smaller than normal so obviously birth weight is less. Pregnancy in women with arrhythmogenic right ventricular cardiomyopathy ( ARVC). In ARVC fat and scar tissue re-place the normal heart muscle in the right ventricle. The right sided pumping chamber gets bigger and contraction is impaired. Again there is a risk of getting arrhythmias—this time more ventricular arrhyth-mias than atrial—but you can get both. And again, ARVC is a genetic condition. So if you have symptoms of breathlessness and you get Continued next page...

Pregnancy care for women with CM…. Continued from previous page

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pregnant, the breathlessness is go-ing to get worse. If you have ar-rhythmias they are going to get-worse but again we treat arrhythmi-as aggressively and try to damp down any rhythm problems during pregnancy. As you can imagine, the last thing you want is someone hav-ing a proponged arrhythmia and needing a cardioversion ( an elec-tric shock to help the heart return to normal rhythm). So we try to damp the arrhythmia down, even just short bursts of small amounts of fast rhythm. We will give betablockers to do this. If needed we can use more potent anti-arrhythmics. I have hd to use amiodarone twice, even though it can affect the baby, as it was the only medicine that prevented ar-rhythmias but not in patients with cardiomyopathy but in those with congenital heart disease. We es-sentially have to use the medication that is going to maintain normal rhythm as it’s very important for a good outcome for mother and baby. Again, aspirin is used as a blood thinner if the right ventricle is en-larged and there are no arrhythmi-as, whereas low molecular weight heparin injections are given if there are arrhythmias. What to expect. Again you should expect obstetric

reviews as normal. You will have regular echos every six weeks to ensure heart function remains sta-ble. We would still aim for vaginal delivery as we do in most women with heart problems and we’d con-sider early delivery if there were any major problem that do not re-spond to drug treatment. There is a low risk of complications in preg-nancy if the ARVC is mild and a hgher risk if the ARVC is severe and there is poor function of the right ventricle. Again you can get a more objec-tive idea of the function of the right ventricle from the echo and the ex-ercuise test. But there is minimal literature as ARVC is a relatively new condition so pregnancy data is still not out there. If symptoms are there before pregnancy they are going to get worse during pregnancy. Most symptoms do respond to medical treatment with tablets. More ad-verse events can be anticipated and discussed at the prepregnancy review so that you know what to expect. Occasionally wwe will deliv-er a baby early for the sake of ma-ternal health but I am pleased to say that major events are very rare. In summary: Pregnancy is not without

some risk in women with

heart problems but outcome in the main is good.

As a general rule cardiolo-gists are not normally that comfortable with pregnant women so you have to find one that is.

Do seek a pre-pregnancy re-view by an expert who under-stands pregnancy and your heart condition.

If you want to know who and where the expert doctors are, and you in the UK the Cardi-omypathy Association can let you know.

If you missed Part 1 of the article in the UK section of Cardiomyoathy Australia please contact the [email protected] and we can send you the previous news-letter containing the article,

Please note Cardiomyopathy Australia does not give recommendations or referrals to cardiology pre-pregnancy specialists. You must speak with your GP or your cardiologist if you want advice on these issues. Cardiomyopathy Australia is a support group however, some State contacts may know of a pre-pregnancy cardiol-ogist in your particular State, and then you would need to get a referral from your attending specialist for this pur-pose. (Editor)

Continued from previous page

The advantages of using warfarin over aspirin in heart failure patients appears to be age-related, with patients under 60 getting the most benefit, suggests a new study.

Younger patients account for the greater share of risk reduction for stroke, brain bleeds and death said Dr Shu-nichi Homma of the Columbia University Medical Centre in New York City, and his colleagues. The study recruit-ed heart failure patients with a normal heart rhythm but low ejection fraction. The younger patients also had the benefits without an increase in major bleeding, the re-searchers wrote in the study published online in Circula-tion: Heart Failure.

Patients older than 60 in this sub-analysis saw no differ-ence between warfarin and aspirin in outcomes after a

three year follow-up. But when researchers looked at major bleeding, the use of warfarin in older patients was significantly associated with worse outcomes. Younger patients on warfarin saw a relative 32 per cent reduction in adverse events.

In May, the European Heart Failure Association issued new guidelines that stipulate heart failure patients with-out the irregular heart rhythm atrial fibrillation should not routinely receive anti-clotting drugs.

The study had several limitations, the authors said, in-cluding the use of variables that were not pre specified, no placebo group, and no clear mechanism for the re-sults.#

Warfarin has better results in people under 60

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Professor Perry Elliott I senior lecturer and consult-ant cardiologist, Heart Hospital, London

answers your questions

Q.. My ex partner and father of my teenage children has been diagnosed with hypertrophic car-diomyopathy and is awaiting gene testing. I’ve asked my GP about heart checks for the chil-dren. He says we should wait for the genetic test results. Is this the right way to proceed? A. The immediate relatives of someone with HCM can be screened clinically with an ECG and echocardiogram. But a nor-mal clinical evaluation does not exclude disease development. So family members need repeat assessment. When a definite ge-netic mutation is identified in a patient, relatives can be genet-ically tested and if the mutation is not found, they can be dis-charged from clinic. If a definite mutation is not identified or ge-netic testing cannot be per-formed, relations should be of-fered clinical screening alone. In this case, if the genetic tests are being done and as log as your children are well and have no worrisome symptoms, I would await the results. If the genetic testing is unlikely to be done in the near future, they should be screened clinically with an ECG and echo. Q I’ve heard that energy drinks can raise blood pressure and interfere with the heart’s electrics. Is this true and should people with cardiomyopathy watch the amount of energy drinks they have? A In general most energy drinks contain caffeine which is a cardi-ac stimulant. If you have a heart

condition, I would advise that consumption of energy drinks should be kept to a minimum. Q. What is the consensus in the surgical literature about the re-pair of heart valves in people liv-ing with DCM? A. People with DCM can develop a leaky mitral valve. The scien-tific literature on surgical repair suggests that it is associated with a significant mortality and uncer-tain benefit. A new catheter based therapy that uses a clip o the valve to reduce the leak shows some promise, but this is currently under review and prob-ably requires more data from tri-als before it can be used in eve-ryday practice. Q I have seen reports linking amiodarone to cancer. I have been taking the drug for many years. Should I be concerned? A. Amiodarone is a potent drug used for many years to treat heart rhythm problems. Although often very effective it is associat-ed with a number of side effects including sensitivity to sunlight and thyroid and lung problems. Some animal studies have sug-gested there is a risk of thyroid tumours but the evidence that this is a major problem in individ-uals with normal thyroid function is scant. A study in Taiwan has suggested that the overall risk of cancer is similar to the normal population but has suggested that men on a high dose may have an increased risk. Unfortu-nately, the study did not include

information on other factors such as smoking which could have influenced the result. For now there is no need to discontinue the drug but efforts should be made to use the lowest effective dose. Q Our son is 16 and seriously affected by cardiomyopathy. Nei-ther we or the doctors, as far as I aware have talked to him about the risks to any children he might have. Who should tackle this and when? A This a a very important and difficult question. Counselling about issues related to genetic disease in children and adolescents requires a careful approach as there are complex ethical issues. It is important to discuss reproductive issues with 16 year olds but the might be easier if mediated by a specialist team including nurses and clini-cal psychologists. familiar with the issues raised by inherited heart conditions. Q I saw a report in the media suggesting that magnets in sec-ond generation IPods could inter-fere with ICDs. Is this the case and is it safe for people with heart devices to use this technol-ogy? A. As with any potential source of interference with an ICD, I rec-ommend discussion with your ICD clinic who can check with your device manufacturer abd if necessary arrange to test your device for possible interference #

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W e know that many of the drugs we use cause side

effects. Sometimes it is difficult to get the right balance between im-proving your heart and relieving symptoms, and the side effects you might experience. But there is usually a balance to be found. If you are experiencing any side effects do not stop taking your medication without consulting a doctor—often there will be an al-ternative that may suit you better. Betablockers Betablockers ( atenolol, bisopro-lol, carvedilol, metaprolol, pro-pranolol) slow your heart down so tht the hart doesn’t beat too quick-ly. The also help to reduce the force of the heart beat. This means that the heart is ot working as hard but is able to pump more blood with each beat. These drugs can also help to prevent faster heart rhythms associated with cardiomyopathy. Common side effects are: Fatigue ( this is usually

worse for a few days when they are first started, or when the dose is in-creased).

Cold hands and feet Disturbed sleep with vivid

dreams Mood swings Dizziness Erectile dysfunction Diarrhoea If you experience any of these, discuss it with your doctor. Side effects can be helped by reducing the dose or taking a different beta-blocker. People takinf betablockers may feel worse for a couple of months before starting to feel the benefit. Betablockers should always start

at a low dose and be gradually increased. This helps lessen the side effects. Drinking alcohol with betablockers can lower your blood pressure and cause dizziness. Calcium channel blockers If you can’t tolerate a betablocker, you may be given a calcium chan-nel blocker (verapamil, diltiazem).. These can also reduce the heart’s workload. In cardiomyopathy, ve-rapamil is most often used. The main side effect is Constipation. You may need

to use laxatives regularly to help.

Ace-inhibitors Ace-inhibitors ( ramipril, enalapril, lisinopril, captopril, perindopril) open up the blood vessels to im-prove bloodflow to the heart mus-cle. Althou8gh we know that I the short term they can cause blood pressure to drop a bit, as heart fuction improves this lessens. As with betablockers you should start on a low dose and have it gradu-ally increased. Your blood pres-sure and kidney function should be checked with every dose in-crease. The most common side effects are: Dry, tickly cough Itchy skin If you experience either, speak to your doctor. You can switch to a similar group of drugs called ARBs ( angiotensin recptor block-ers), which do not cause such side effects. Very rarely, ACE inhibitors can cause tongue and face swelling.If this happens, seek urgent medical help. As with betablockers, drinking

alcohol with ACE inhibitors can cause a drop in blood pressure. Diuretics Diuretics ( furosemide, bume-tanide) are used to treat fluid build up which can bause breathless-ness and ankle or stomach swell-ing. They make you pass more urine which can be inconvenient. You can alter the timing of dos-es if you are travelling or going to an event where you will not easily be able to find a toilet. You will get an idea of how long the medication takes to work and how long the effect lasts and so can adjust the timing accordingly, Amiodarone Amiodarone ) sometimes used to control abnormal heart rhythms) needs to be closely monitored. If you are taking amiodarone dis-cuss with your doctors what tests will need to be done and who is responsible for arranging them.. Keep taking the medicine Unless you have a severe reaction to your medication in which case seek medi-cal help immediately. Never stop taking it without discussing it with your consulting GP or cardiac nurse. There may be alter-natives which suit you better, or you may be able to reduce the dose to a level that suits you. Sometimes simply changing the time that you take the medicine or split-ting the dose can improve the side effects and so it is worth discussing whether or not this is an option. Checks Some of the medicines affect other or-gans.So you may need regular blood tests to check their function. These in-clude ACE inhibitors and diuretics. Check with your GP consultant or pharmacist. They can tell you what tests are needed and how frequently they should be done. #

Drug side effects explained...Rachel Walker ... CMA

cardiomyopathy support nurse, writes about the side effects of drugs and how to cope with them

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Embryo testig for gene mutation causing many cas-es of hypertrophic cardiomyopathy (HCM) may soon be approved. The Human Fertilisation and Embryology Authori-ty ( HFEA) is looking at whether to licence pre-implantation genetic diagnosis ( PGD) for families affected by mutations on the MYBPC3 gene. These mutations are thought to cause around 40% of HCM. PGD is a technique that enables people with a specific inherited condition in their family to avoid passing it on to their children. The genes of embryos created through IVF are checked before they are implanted in the womb. It gives seriously affected families the option of

going through IVF and PGD if the affected gene has been found in the family. The HFEA’s licencing committee is due to make a decision on this hypertrophic cardiomyopathy gene later this year. It has already approved PGD in arrhythmogenic right ventricular cardiomyopathy. The application for the licence came from a PGD clinic. Disease experts provided evidence about the condition and the CMA and Genetic Alliance UK provided information about the impact of the condi-tion on patients and families. Familes affected by HCM have been allowed PGD in the past on a family by family basis, but thata was before the current licencing procedures came into force in 2010.#

New licence to stop HCM inheritance?

Growth hormone may benefit heart failure

. Previous research has suggested that nearly four in ten patients with chronic heart failure have growth hormone deficiency.

Treating the growth hormone deficiency may slow down heart failure, at least in the short term, said researchers from the University of Naples in Italy.

Patients with heart failure and growth hormone deficiency were shown to have short term im-provement in heart function after receiving growth hormone replacement. But some previous studies have shown cardiac risks with replacement thera-py. "Although this is a preliminary study, the new finding suggests a new therapeutic approach to a large proportion of growth-hormone-deficient pa-tients with chronic heart failure," say the research-ers led by Dr Antonio Cittadini.

The team looked at 158 patients with moderate to

severe heart failure and found 63 had growth hor-mone deficiency.Of those completing the four year study, 17 patients were given growth hormone and 14 were not.

Left ventricular ejection fraction (a measure of the heart’s pumping ability) rose by 10 per cent in the growth hormone group compared with a decline of two per cent in the others.

Increases in peak oxygen consumption and a low-er number of hospital admissions for worsening heart failure in the growth hormone group were also noted.

There were no major adverse events among pa-tients who received growth hormone, although two patients on the drug reported joint pain, a common complication with these drugs.#

Some patients with chronic heart failure may benefit from growth hormone replacement, suggests a small study.

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CARDIOMYOPATHY ASSOCIATION OF AUSTRALIA Ltd.

If you are reading someone else’s copy of our newsletter and would like

information about the Association, why not contact us?

Please return this slip to the Membership Secretary, CMAA Ltd, PO Box 273, Hurstbridge VIC 3099

Name: __________________________________________ Address: ________________________________________ _______________________________________________ __________________________ P/Code _________ Phone: _____________________ Fax: ___________ Type of CM: ______________________________________

CMAA Library Books and DVDs are available from our Library for members’ information. Books: Living a Healthy Life with Chronic conditions by Long, Sobel, Laurent Inherited Heart Conditions Ventricular Cardiomyopathy Inherited Heart Conditions HCM & Inherited Heart Conditions DCM

DVDs DCM… The Facts HCM…. The Facts One life a Second Chance HAS Cardiomyopathy Heart Failure ‘Speaking from experience.’ CMAA Preventing Sudden Cardiac Arrest.. (Medtronic) Living with CM CMAA Dr Lindsey Napier 2005 A Multi Disciplinarian Approach to CM Professor Sindone 2006 Chronic Heart Failure CMAA Dr C de Pasquale 2004 HCM CMAA Dr Mark Ryan Maintaining Heart Health Dr E Barin 2004 CMAA Conference DVDs Brisbane 2005.. Sydney 2006. Melbourne (4 discs) 2008 Melbourne 2008 Sydney ‘ Cardiomyopathy What’s Working’ 2010 Brisbane ‘ Cardiomyopathy a Moving Picture’ 2012 Books are returnable but DVDs are Non returnable. A small Donation would be appreciated towards running the Library For all borrowings & enquiries please contact t The Librarian at CMAA Ltd P.O Box 273 Hurstbridge Vic 3099 Or Email [email protected]

Page 30

For details of your nearest

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(24 hour message bank service)

or

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Or visit our website at:

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