Cardiomyopathy Australia - Cardiomyopathy Association of Australia

Cardiomyopathy
Australia
Has Cardiomyopathy
Touched Your Life?
Supporting people with
cardiomyopathy and their
families.
Newsletter Number 79 — Winter 2014
Includes selected articles from CMA UK Newsletter
Cardiomyopathy Association of Australia Ltd is a not-for-profit registered charity
ABN 36 091 171 470
Contents
Contents and Disclaimer………………………....2
Editorial……………………………………...…...….3
President’s Message……………………………....4
News from Victoria…………………………………5
News from Tasmania………………………………6
News from South Australia and NT……………..7
News from Queensland……………………………8
Young Members’ Group…………………………...9
News from New Zealand………………………...10
AGM - Call for Nominations………………..….10
Those old wives and their tales………………..11
“Why on Earth?”……………………………….…12
Dear Doctor………………………………………..13
CM and Driving Licences……………………….14
Heart Foundation Recipe………………………..15
Know your medicines and your fruits………...16
The Best of British ( articles from CMA UK)……17-26
Library details & Newsletter Order form…..…27
Back Page Contact Details……………………...28
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 Cardiomyopathy, 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 necessarily 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 information 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.
Page 2
E
ditorial
Editorial
Margot and John, who have edited the newsletter for more years than they care to remember,
have passed the job on. Despite Margot’s poor health and John’s duties as carer and person
who says, “Don’t do so much!”, they continued to edit for a while. The Association owes them a
debt, as it does to all those who have cardiomyopathy themselves but volunteer their time. We
can hear the cheers around the country for Margot and John for a good job well done for such a
long time.
We, David and Anne Abbott of Queensland, have taken on the task and will welcome any suggestions that you, the readers and members, care to make.
This newsletter does go all over the country and not only to the sick and their carers. It is read by
cardiac care nurses and exercise specialists; it’s read by other organisations; it’s read by specialists. We hope it is useful and appreciated.
The Cardiomyopathy Association exists to help. We aim to be the very approachable face of officialdom. In fact, we try to be as unofficial and unstuffy as possible. The Association is a forum
for help in making sense of a frightening diagnosis, for sharing experiences and seeing others
who have coped and are coping. To be told that something is wrong with your heart shocks the
living daylights out of you. To hear that diagnosis when it is about a partner, a child, any member
of the family is frightening.
It is difficult to remember how alone we felt when David was diagnosed years ago. The specialist
told us that he could not send us anywhere for information as there was nowhere. Then Robyn
Bell, bless her, decided to do something. The Association was founded in Queensland and has
been a help to us ever since. Knowledge about the condition continues to grow fast. The condition is no longer considered rare. Many rogue genes have been identified. Drugs have been developed. Surgical procedures have been refined. Technology has helped many sufferers to lead
a near normal life. The condition positively is no longer a terrifying prospect in the vast majority
of cases .
So at a time of change for this newsletter, let us remember with gratitude all the people who have
changed this condition, from a problem little-known, to a condition that can be so improved.
Anne and David
Newsletter editors
Email abbottdm@gil.com.au
Page 3
P
resident ‘s & National Executive Report
The World Cardiac Congress was held in Melbourne from Sunday 3 – Wednesday 7 May
where over 6000 visitors attended from all parts of the globe. We are extremely grateful to the
Heart Foundation for allowing us to share their booth in the Exhibition Hall. Our new banner
was prominently displayed attracting interest from many overseas and Australian health professionals including cardiologists from Russia, Central Africa, Turkey and Malaysia. Most overseas cardiologists informed us that there were no similar organisations to ours in their countries. Special thanks to our volunteer members, Reva, Tim and Clive who attended the stand
on other days assisting Joan and myself to increase awareness of Cardiomyopathy Australia.
Arrangements are continuing for our own seminar to be held following our Annual General
Meeting on 13 September in Melbourne. We have adopted the theme “Cardiomyopathy –
Keeping you on track” and will update you on the program through the website and in our next
newsletter.
With this newsletter you will receive a request for nominations to the National Executive for
2014-16 also a membership renewal form for 2014-15 for those who are not life or extended
period members. We welcome and thank Kerry Shaddick who has agreed to fill one Executive
position in a casual appointment until the AGM elections. Kerry will continue to be our South
Australian State Contact a role which she has performed splendidly, building on that established by Val Stevens and Janet Weissmann. We sincerely regret that Rosie Johnson has resigned as a director however we are delighted that she will continue as our librarian.
We have kept membership fees at their current level and hope you will continue to help support your Association with timely renewal. All members should take this time as an opportunity
to notify any change of personal details either on the renewal form, letter or through our website.
I often comment to health professionals and others including visitors to the Cardiac Congress
that we take pride in the fact that our members are well informed of their condition. This assists us to provide a high level of support. Our newsletter is a shining example providing updates of developments in diagnosis and treatment. You will note that this edition contains special features from our sister organisation in the United Kingdom such as “Cardiomyopathy and
Pregnancy” that younger members may wish to retain for reference. I extend best wishes to
Anne and David Abbott for their first edition as editors. They know they have a hard act to follow in Margot and John who have set the bar at the highest level. On your behalf and the Executive, I extend special thanks for a job well done.
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 your copy online from your favourite online book retailer such as Amazon, Barnes & Noble or Australian sellers such as Bookworld & Angus & Robert son @
$6.50 a percentage of which will be donated to Cardiomyopathy Australia.
Page 4
Victoria News
H
ello from Victoria to all members
Our March meeting was well attended where our guest speaker Dr Justin Mariani gave a comprehensive presentation on heart failure and clinical services available at the Alfred. All members present appreciated him giving his time on a Sunday morning especially his ready availability to answer questions following his talk.
Most of us live with cardiomyopathy confident that if we do the right thing, guided by medical
specialists and taking prescribed drugs we can expect to live longer with improved lifestyles. On
the rare occasion that things take a turn for the worse a heart transplant can become necessary. At the time of writing Karen who assists me organise the Victorian meetings has just received the gift of a new heart following recent difficult times. We wish her and her family well as
she meets new challenges during her recovery.
You are invited to attend our next lunch to be held at the Matthew Flinders Hotel, Chadstone on
Saturday 21 June at 12.30pm. As previously advised our next Epworth meeting will be held on
Sunday 20 July with a speaker to be confirmed.
I look forward to seeing you at coming meetings and your RSVP will be appreciated.
Kind regards
Joan Kerr
Tel: (03) 9848 7082
E: jakerr@iprimus.com.au
Thank You
Our sincere thanks to our sponsor, Direct Response Australia (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.
Page 5
Tasmania News
H
i from Tasmania
Eight members and supporters of our Tasmanian CMA Family met under perfect skies at City
Park in Launceston for our annual Picnic/Lunch on Sunday the 22 nd of March last. It was great
to catch-up and share our CM journey. Especially with Dorothy, who we had not seen for a
couple of years, and to welcome Barbara back into the fold. An added bonus on the day was
the presence of the City of Launceston RSL Brass Band performing their Centenary Concert.
There were at least sixteen tunes on the programme which were thoroughly enjoyed by all.
Whilst our attendance numbers were not great, those present expressed a desire to continue
this social function. Your comments and suggestions in relation to this would be appreciated.
It was good to make brief contact with Janet and Flora who were visiting our state recently.
I trust that the clean , crisp air had the desired health benefits.
If I can be of any assistance at any time please contact me at vbaustin@bigpond.net.au or
phone 6229 6181.
Keep well ,
Brian Austin (Tasmanian Contact Person)
Do you have a story or experience you would like to share
with other members?
With our members spread throughout Australia and New Zealand the Association’s newsletter is an ideal way of sharing experiences on managing the
CM condition. If you have a story to tell, you may wish to do so in a future
issue. In which case, we would be delighted to hear from you and receive
your contribution. If you feel you need some help in preparing your story,
please do not hesitate to contact us.
Anne and David Abbott - 07 3202 8138 - abbottdm@gil.com.au
Page 6
SA and NT News
Hi to all members in SA & NT
I am sure we are all wondering where the year has gone, already nearly half way there.
We have had two meetings since the last newsletter. I am happy to report that on March 16 we
finally got to go on our Dolphin Cruise along the Port River. A few weeks earlier we had to cancel it because of 44 degree heat. I think everyone enjoyed doing something a bit different and it
was a nice way to spend a relaxing Sunday afternoon.
Our second meeting was at the Goodwood Hotel with guest speaker Kylie Harman who is the
Senior Dietitian at Ashford Hospital. She spoke to us about the importance of our diet and how
managing this is essential for people with a heart condition. Kylie also showed us what to look
for on the labels of the food we buy. It was really interesting and we are very grateful to her for
giving up her time.
We are lucky to have Bronwyn Batson's son-in-law running in the City to Bay Fun which will be
held here on 21st September 2014. It is a great way to raise awareness of Cardiomyopathy
Australia and also raise funds through the Everyday Heroes webpage. We are in the process of
setting up the details and will let everyone know when this is finished. Hopefully everyone will
get behind this worthy cause.
Take Care.
Kerry Shaddick
SA/NT Contact
Phone: 08 8270 7747
Email: kerry.shaddick@hotmail.com
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: j.ingles@centenary.org.au
Page 7
Queensland News
H
ello from Queensland
We held our quarterly meeting on Saturday March 1st at our usual venue in Toowong. In our
small gathering we had a mix of new and familiar faces. It was particularly pleasing to see our
previous Queensland Contact, Glennys, looking so well and making excellent progress in her
recovery.
In a relaxed and informal atmosphere over refreshments, members and carers enjoyed catching
up on recent developments with the condition, and exchanging views and information. The
most common feedback we receive from those attending these support meetings is the value of
such a forum and the realisation that they are not alone in trying to manage the condition.
So, if anyone has been thinking of attending a meeting, please come along on the 1st Saturday
of March, June, September and December at 1.00pm in the Meeting Room at Toowong Library.
You and any accompanying family or friends will be most welcome.
David and Anne Abbott
Queensland State contacts
phone: 07 3202 8138
email: abbottdm@gil.com.au
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
Page 8
Young Members Group (YMG)
Dear Young Members,
I have been struggling to come up with something to write about this time around.
What is relevant to us as young people living and coping with a chronic illness?
I was heading home tonight and I realised that the answer was right there in front of me, every
night as I jump off the train and walk up the two flights of stairs at the station then up the ramp to
the road where I have parked my car about 500m away.
At 31 years of age keeping up with other passengers is my daily struggle.
It sounds so simple but to me it is embarrassing. I am young and I look so well but I am one of
the slowest to do that walk from the train to the car.
I take my time on the platform so I am not the first to reach the stairs and don’t hold up the
masses behind me. I put my head down and try not to notice that the gentleman to my right with
at least two decades on me is powering ahead or the grandma on my left isn’t even puffing at
the pace.
It’s confronting to admit it but I want to keep it real on this page and remind you all that you are
not alone. Even though at times it can feel lonely and scary but if you do what you doctor says
and remember to be kind to yourself you can take on the challenge.
There are always going to be times like the stairs at the railway station and I have been known
to stall and pretend to be writing a text on my phone or tying up a shoelace just so most people
are ahead of me.
It’s how we face it that makes all the difference.
Keep the Ugg boots and flannel pyjamas handy this coming season, I’ll see you in spring.
Cheers,
Until next time,
Miranda Hill
miranda82@ymail.com 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
Page 9
New Zealand News
Hi All
Hope you are all well and enjoying the change of seasons. Lovely to get a few new kiwi
members. So many in fact we held a meeting back in the summer. So, I thought it would be
nice to meet up again. Just to share information and see how we are all getting along.
The date is Thursday 26th June 5pm at the Commons again. If you can't make it on that date
let me know. If the majority can't make that date it can be changed.
I've had an interest experience with my teeth lately. One needed removing, but I didn't feel
comfortable with the oral surgeon I was referred to. So, I contacted my cardiac specialist
and he has referred me to the hospital oral health clinic. I think it's a little known service that
is obviously available to us. I will let you know how it goes.
Look forward to catching up again.
Andrea Fullerton
NZ Contact
Email: andreafullerton@yahoo.com.au
Phone: 4161239
2014 Annual General Meeting — 13th September
& call for nominations for the National Executive
A notice about the Association’s Annual General Meeting and call for nominations for positions on the National Executive has been enclosed with member copies of this newsletter
and we encourage you to read it.
Any members who have been considering how they may be able to help in the running of
the Association, this is your opportunity to join the group of volunteers who look after and
participate in the Association’s management.
If you wish to be nominated, please complete and sign the enclosed form, obtain the signatures of 2 members who are willing to propose and second your nomination and submit
the form to the Secretary to arrive by 1 August 2014.
The meeting will be held at Epworth Hospital Auditorium, Melbourne at 1.30 pm. While it
is preferred, it is not mandatory for nominees for the National Executive to attend the Annual General Meeting.
Page 10
Those old wives and their tales………
…..... may have been right
Have you heard that a few people have died from a broken heart? It is called stress cardiomyopathy and has the same symptoms as a heart attack. Sufferers typically have had a severe
shock to the system resulting from the death or illness of a loved one, (hence broken heart) anger, terror, accident, in fact , anything that can cause a person stress. It is a temporary cardiomyopathy but is now accepted as very real. Patients recover and the condition does not appear
to recur.
It occurs, apparently, mainly in women and was first described in Japan which is why it is often
called Takotsubo cardiomyopathy. The left ventricle can balloon into a shape resembling a narrow-necked vase that is used to catch octopuses in Japan and is called a takosubo. Most of us
will continue to call it stress cardiomyopathy.
On the lighter side!
In a car garage, where a famous heart surgeon was waiting for the service manager to take a
look at his Mercedes, there was a loud mouthed mechanic who was removing the cylinder heads
from the motor of a car. He saw the surgeon waiting and lured him into an argument.
He asked the doc after straightening up and wiping his hands on a rag, "Look at this car I'm working on. I also open hearts, take valves out, grind them, put in new parts, and when I finish this
baby will purr like a kitten. So how come you get the big bucks, when you and I are doing basically the same work?"
The surgeon very calmly leaned over and whispered to the loudmouth mechanic, "Try doing it
with the engine running."
A man suffered a heart attack and had open heart bypass surgery. Post surgery he woke up to
find himself under the care of nuns at a Catholic private hospital.
On his way to recovery, a senior nun and her junior assistant came up to him and asked him how
he was going to pay for his treatment.
He was asked if he had health insurance. He replied in a raspy weak voice, "No".
The nun asked if he had any money in the bank. He replied, "No". The nun asked, "Do you have
a relative who could help you?" He said, "I only have a spinster sister who is also a nun."
The junior nun got a little perturbed and announced loudly, "Nuns are not spinsters! Nuns are
married to the Lord." The patient replied, "Then please send the bill to my brother in law."
Page 11
Why on earth….?
The other night I felt very old and very much of my generation. I was watching schoolgirls, probably in Year 12, walk across in front of me. I really did not look at them. My eyes were fixed on
their shoes and how they walked. Now, I can remember wearing winkle-pickers, shoes with fairly
high heels and pointed toes. They were uncomfortable because toes were pinched. Wearers
were required to take them off in some places because the small heels brought such weight to
bear on a small part of the floor that they made indentations. I can remember going to a dance
and at the end hearing boys say, “She can hardly walk.” That was true but I was mortified.
Surely those boys realized I had to be fashionable? But that remark was the beginning of the end
of my following silly fashions.
These lasses though, were nearly falling over. The shoes were platforms with enormously high
heels. They didn’t fit properly and their calf muscles were under strain. Their knees were constantly bent. But, oh, they were so fashionable! But were the shoes and the consequent poor
walking going to make them attractive to boys? I remembered at that moment that horrible moment so long ago. Have boys changed so much? Do the lads of today find fashions quite so
silly? And then I remembered the queer hair-styles some males favour. “Takes me half an hour,
miss, to get this right.” I thought they could have just not bothered to brush their locks once they
got out of bed.
We can all remember the desperate need to be in fashion and the terror of not having the right
things to wear. Fitting in and not being different were – and are, so important. It might be worse
now as there is more money to spend on clothes and accessories. Human beings are daft.
Wasp waists were fashionable once and were achieved by wearing corsets laced so tightly that
women fainted often. Their underwear weighed a lot, possibly as much as ten kilos.
Men shaved their heads as they do now but in the seventeenth century covered their baldness
with great scratchy wigs. In Renaissance Italy shoes for men made of soft leather had such long
toes that, to stop tripping, chains were fastened from the toes to the calves to keep the shoes up.
Young drivers drive fast because of peer pressure as once young drunks drove coaches too fast.
The outcome is the same: death or injury. We were and are daft but need fashions be quite so
dangerous?
Designer drugs are a horror and so are energy drinks. We are pounded with ads telling us we
need tablets to give us essential vitamins and trace elements. We can save the money and just
eat good varied food. Once mothers were bad mothers if they did not use a washing powder
that made clothes very white. Now mothers are failing their children if they do not supplement
children’s diets with pills. We can be fashionable, slavishly, without thought.
What we must not do is carry this need to fit in to the extent that it becomes harmful. Patients
with heart conditions should not take any drugs, chemicals and supplements without clearing it
with medics.
Nor can heart patients continue to follow a lifestyle they had before diagnosis. Some activities
are dangerous; some exercises and team games, some occupations and work practices are
harmful. Perhaps, after treatment cardiomyopathy patients can pick up some of their previous
activities but only after being cleared by a doctor. Patients can listen to the messages of their
bodies and make adjustments. Start a fashion: listen to your heart.
Anne Abbott
Page 12
Dear Doctor……..
Question:
I have had atrial fibrillation (AF) since I first contracted dilated cardiomyopathy (DCM)
some years ago. I could always tell when my heart was in AF by feeling my pulse but
since having a biventricular pacemaker implanted a couple of years ago I am unable
to be really sure if my heart's fibrillating as I can't feel it as clearly. It is obviously not
going as fast as it used to. However recently I saw an electro-physiologist who said I
had only had atrial fibrillation once in the last six months and the other times when I
have thought it was in AF it was actually in atrial flutter. I had never heard of this and I
am asking: is atrial flutter as serious as atrial fibrillation? Can one die from either atrial
fibrillation or flutter & is there any danger of either of these becoming ventricular tachycardia (VT)?
My most recent AF episode was going to VT about every 4th or 5th beat causing extreme chest pain & over the past 18 months or so my AF has been classed as paroxysmal.
Answer:
Once the biventricular pacemaker is inserted, your heart would tend to be regular as it
is driven by the actual pacemaker. Therefore, it is often difficult to feel underlying fibrillation. It also allows the use of drug therapy to slow any fast heart rates down.
The electrophysiologist interrogates the pacemaker which would be able to tell
whether there was any atrial fibrillation or a different arrhythmia such as atrial flutter.
Atrial flutter is different from fibrillation in that it is a large "short circuit" within one area
of the heart whereas atrial fibrillation is chaotic beating or pacing of all the cells within
the atrium. Flutter tends to be regular where fibrillation is definitely irregular.
Both atrial flutter and fibrillation are serious mainly due to the risk of clots forming in
the heart and then breaking off to cause strokes. Both atrial fibrillation and flutter are
different from ventricular tachycardia (VT) which is a fast heart rhythm in the ventricle
or bottom chamber of the heart. Occasionally fibrillation and flutter can cause ventricular tachycardia as you had mentioned but this is uncommon and usually treatable.
The defibrillator is a back-up should ventricular tachycardia occur to prevent something nasty occurring.
Please email your Dear Doctor questions to Newsletter on our website
(www.cmaa.org.au) soon for inclusion in our next issue.
Page 13
I’ve been diagnosed with CM…
…how does this affect my driving licence?
This is a recurring question regularly asked by recently diagnosed members. We have
addressed this on a number of previous occasions, but it is probably timely to revisit the
issue given that minor modifications were made in 2013 to the guidelines for medical assessments.
Uniform regulations apply in every State and Territory of Australia.
The bad news is that any person with Dilated or Hypertrophic Cardiomyopathy is considered “not fit to hold an unconditional licence”.
However, the good news is that:
“a conditional licence may be considered by the driver licensing authority
subject to periodic review, taking into account the nature of the driving task and
information provided by the treating doctor as to whether the following criteria
are met:

there are minimal symptoms relevant to driving
(chest pain, palpitations, breathlessness); and

the person is not subject to arrhythmias.”
( www.austroads.com.au )
To obtain a conditional licence, licensing authorities suggest you take the following
steps:
1.
Obtain a copy of the Assessment Form (downloadable from your licensing authority)
2.
See your GP for an assessment of your condition. This will also include an eyesight
test. If your situation is complex, your GP may refer you to a cardiologist for an opinion regarding your ability to meet the criteria.
3.
If your GP considers that you meet the criteria, he or she will complete and sign the
form.
4.
Take the completed form to your licensing authority with your driving licence for endorsement (your licence will usually be endorsed “M” to indicate a medical condition). Ensure that you carry the signed form with your licence on all occasions.
5.
See your GP for periodic reviews (usually on an annual basis).
These guidelines apply to private vehicle licences. Stricter guidelines apply to commercial vehicle licences (e.g. truck, bus, taxi).
Remember that if you are assessed as not meeting the criteria for a conditional
licence, you will need to surrender your licence. Failure to do so and continuing to
drive, may compromise your insurance arrangements. So, please take heed.
Page 14
Carrot and walnut cupcakes
These healthier cupcakes will go excellently with afternoon tea!
Makes 12
Preparation time: 20 minutes
Cooking time: 20 minutes
Ingredients
2/3 cup brown sugar
2 eggs*
1/2 cup light olive oil*
1 cup self-raising flour
3/4 tsp bicarbonate of soda
1 tsp ground mixed spice
1/2 cup plain, unsalted walnuts, chopped*
2 cups grated carrot (see Tip)
Icing:
1/3 cup icing sugar, sifted
1/2 tsp vanilla essence
1/2 cup light spreadable cream cheese*
*Products available with the Heart Foundation Tick. Remember all fresh fruit and vegetables automatically qualify for the Tick.
Instructions








Preheat oven 200°C (180°C fan-forced).
Line twelve 1/3 cup capacity muffin holes with paper cases.
Combine brown sugar, eggs and oil in a bowl, whisk until sugar has dissolved.
Sift flour, bicarbonate of soda and mixed spice together over the oil mixture and fold
in until just combined.
Stir in the walnuts and grated carrot.
Spoon mixture into the paper cases until three-quarters full.
Bake for 18-20 minutes or until cooked through when tested with a skewer.
Stand for 10 minutes in the pan then lift onto a wire rack to cool.
For the icing;


fold the icing sugar and vanilla into the cream cheese and refrigerate until required.
Spread icing over the cakes and serve.
Tips


You will need 2 medium carrots, peeled then grated to give you 2 cups.
These cakes keep well for 3 days in an airtight container at room temperature (only
if un-iced).
Recipe and image reproduced with permission. © 2012 National Heart Foundation
of Australia. For other healthier recipe ideas, visit www.heartfoundation.org.au/
Page 15
Know your medicines and your fruits
The Association has always advised members to take control of their medicines. Know why you
are taking each one that is prescribed. Read the information leaflet that comes with each one. If
necessary, phone the helpline whose number is at the end of this article.
Ask your pharmacist for information and always, ALWAYS, let your specialist, pharmacist and GP
know all medicines that you take, prescribed, complementary, and non-prescriptive.
All medicines and drink and food are chemicals. Nothing is free of chemicals. All have the possibility of being harmful when taken in combination. Some people think that taking “natural” or
“organic” pills and so on means that they are safe to consume. That is just not so in some cases.
Some medicines can react badly if taken with a small glass of grapefruit juice. Some can sometimes be affected by limes and bitter oranges. These fruits contain furanocoumarins which can
affect over 80 drugs, with serious consequences in over 40. Marmalade can affect some drugs.
Some fruit juice drinks contain grapefruit. Read the contents on the packets of what you buy.
Amiodarone, Verapamil, Eplereone are fairly common drugs prescribed for heart conditions.
People taking those should not have grapefruit. Other drugs, with the side-effects when combined with grapefruit, are listed on the website at the end of the article.
This may sound frightening but trouble can be avoided. Pharmacists usually put a warning
sticker on prescribed medications but that oil or that vitamin supplement may contain something
that will interact and there may be no warning on the packet. Over-the-counter pills can interact
badly with prescribed drugs or be harmful to some conditions.
Make a list of the drugs and the dosages that you take and keep it with you. You are taking
drugs; be responsible for them. Ensure you find out information on the drugs. Gain knowledge
about drugs so you can feel in control.
A full list of drugs that interact with grapefruit is available on this website which is funded by the
Federal Department of Health
www.nps.org.au
Information can be given over the phone on
1300 633 424 (1300 medicine)
And you can ask your pharmacist or GP. Never be afraid, embarrassed or feel you
are a bother when you ask questions about your condition.
Page 16
The Best of British
These articles in this section of the CMAA Newsletter are excerpts from the CMA UK Newsletter and
are used with permission 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
Help for pregnancy
cardiomyopathy diagnosis?
Researchers say they can now distinguish peripartum cardiomyopathy from other heart diseases.
Peripartum cardiomyopathy is a term for a
particular type of dilated cardiomyopathy
which affects women in the later stages of
pregnancy or soon after giving birth.
Ingrid Struman, a project director at the unit
of molecular biology and genetic research at
the University of Liege in Belgium, said that peripartum cardiomyopathy is difficult to detect
because the symptoms – breathing difficulties,
extreme fatigue and palpitations – are very similar to symptoms women often have in late
pregnancy and the months immediately following childbirth.
For seven years the prolactin hormone which stimulates mother’s milk production has been
suspected of being the problem.
In her research in collaboration with German and South African researchers, Ms Struman studied the hormone and developed a biomarker (a biologi-cal measure) which differentiates peripartum cardiomyopathy.
She said that although the role played by the hormone was well established, the mechanisms
by which it attacked the blood vessels and heart tissues had remained a mystery until now.
The results of the study have been published in the Journal of Clinical Investigation.
Page 17
Professor Perry Elliott | Heart Hospital, London
answers your questions
Q: I have left ventricular noncompaction. Should I be taking
aspirin regularly?
A:
Left
ventricular
noncompaction is a heart muscle condition that is characterised by deep
spaces within the wall of the main
pumping chambers of the heart.
Theoretically blood flows more
slowly in these spaces and so
could be prone to clot. The evidence to date suggests that the
risk of clot formation is linked to
the function of the pumping chamber itself. If impaired, some specialists would advise aspirin or
even warfarin to prevent clots
from forming, but there are no
trials to support this practice. When
the pumping chamber functions
normally it is probably not necessary to take aspirin.
Q: What should you do about taking your heart tablets when you
have diarrhoea and sickness?
A: In general it is wise to continue
most prescribed medications
when you have diarrhoea and
vomiting. An exception can be
diuretics (water tablets) as these
can
exacerbate
dehydration
caused by diarrhoea and vomiting.
If diarrhoea or vomiting persists
for more than 48 hours, seek medical advice.
Q: I’ve seen that taking calcium
supplements is not good for heart
dis-ease. Is this true?
A: Calcium supplements are
widely prescribed on the assumption that they help to reduce fractures in people with or at risk of
developing osteoporosis related
fractures. In recent years there
have been studies that suggest
the benefit of calcium
supplementation on fractures is
very modest and may be offset by
an increased risk of cardiovascular
problems, particularly heart attacks. The most prevalent view is
that calcium supplements should
not be encouraged (particularly
in people who have normal calcium intake) and that people
should be advised to obtain their
calcium from a balanced diet. In
people at high risk of fractures,
other more effective measures with
a proven effect should be considered. These interventions have a
fully documented safety profile
which is often better than that of
calcium.
Q: Is there any evidence that taking the diet drug fenphen causes
dilated cardiomyopathy?
A: The combined medication fenflu
-ramine/phentermine (or fenphen) was used until the late
1990s to cause weight loss. In
1996, a paper in the New England
Journal of Medicine from the Mayo
Clinic suggested a possible correlation between valve abnormalities
and the use of fenphen. The
American drug licensing authority
(FDA) subsequently received
many more reports of valvular
heart disease and increased pres
-sure in the blood vessels inside
the lungs (pulmonary hypertension) and the drug was withdrawn
from the market in September
1997. Subsequent studies have
confirmed an increased risk of
valve disease but not cardiomyopathy.
Q: About 20 years ago I was diag
-nosed with mild dilated cardiomyopa-thy (DCM) with atrial fibrillation (AF). My son also has DCM.
Page 18
A few years ago I had a normal
echo and my cardiologist declared
me cured, though I still have AF
and am on clopidogrel. What is the
likelihood I am cured?
A: Your story suggests that you
have a genetic predisposition to
DCM and so I would be very cautious about using the term
“cured”, particularly as you still
have AF. A number of possibilities could explain this apparent
recovery including the use of
medicines to improve your heart,
an incidental second illness such
as inflammation in the heart
muscle (myocarditis) or differences in the interpretation of
your cardiac imaging.
Q: I have dilated cardiomyopathy (DCM) and want to know
about the risk of pregnancy for me
and the baby. Do you have any
statistics on complications during
pregnancy?
A: There is relatively little data on
pregnancy in people with DCM
and the decision to proceed with
pregnancy needs to be considered very carefully. The cause of
your cardiomyopathy is important
as, if caused by pregnancy itself
(peripartum cardiomyopathy), the
risk to mother and baby in subsequent pregnancies is very high.
Some of the drugs used to treat
DCM – specifically ACE inhibitors
and spironolactone – are dangerous to the developing baby and
ideally need to be discontinued
before conception. There are a
number of high risk pregnancy
units across the UK and I strongly
advise referral to one of them before conception.
Patients with
new S-ICD
can have MRI,
says study
Patients with a new internal defi
-brillator (an S-ICD) can safely
undergo an MRI, says a small
study of the first patients with it.
The new device, which is fitted under the skin rather than in
the heart, is particularly suitable
for young people who are very
active but thought to be at risk
of a cardiac arrest.
The device cannot pace the
heart so is not suitable for people who need pacing for a slow
heart beat or to help the heart
pace in a more synchronised
way.
New tiny implantable
heart monitor
A device claimed to be the
world’s smallest implantable
heart monitoring device has
been approved for use by both
European and American regulators.
The Reveal LINQ ICM device, which
can monitor heart activity for up to
three years, is approximately one third
of the size of an AAA battery. This
makes it more than 80 per cent smaller than other reveal devices, says the
manufacturer Medtronic.
The device, designed to help doctors
diagnose irregular heart rhythms. is
placed just under the skin in the patient’s chest and is not visible in most
patients.
Heart rhythm patch on trial
A new patch that records heart
rhythms has proved effective.
The Zio patch, which has one
ECG lead, sticks to the chest and is
waterproof. In a trial the patch was
worn by 146 patients for two weeks
and results were compared with a
24-hour Holter monitor.
The patch recorded more irregular heart rhythms than the traditional
Holter monitor and more doctors
said they could make a diagnosis
from the reading.
P at i en ts c o u ld ex erc i s e a n d
shower in the patch and found it
more comfortable
to use. The patch
can be sent to
patients in the
post. They can
apply it them‑
selves and
t h e n send it
back for analysis.
A v e r s i o n with
three leads is now being
developed. Lead author Dr Eric
Topol said: “I think ultimately the
Holter will be phased out in the next
few years.”
Reassuring results for treatment
An S-ICD is put under the skin
The location and design of
the S-ICD make it safe for magnetic resonance imaging, says
lead researcher Dr Jiri Keller
from the Na Homolce Hospital in
Prague. The ICDs were turned
off during imaging.
The study, presented at
the March European Congress
of Radiology, involved 12 men
and 3 women.
More patients with ICDs now
need an MRI. So this information is important for clinicians
and patients, Dr Keller said.
A study has shown that the long term
effects of an alcohol septal ablation are
“very reassuring.”
The treatment is used when a patient has hypertrophic cardiomyopathy with obstruction and has severe
symptoms.
Alcohol is injected into the heart to
kill off some heart cells, allowing the
blood to flow out of the heart more
easily.
There have been some worries
among the medical community about
the long term safety of the procedure.
But a new study, led by Dr Josef
Veselka, from the University Hospital Motol in Prague, has shown that
highly symptomatic patients who undergo it have long-term survival rates
comparable to those of the general
population.
Page 19
The study has been published in the
European Heart Journal.
The researchers looked at 178 consecutive, highly symptomatic patients
who had the treatment between April
1998 and April 2013. Reductions in
symptoms included almost nine in ten
patients reporting fewer breathing difficulties.
Mortality was comparable to that of the
expected survival for the general population matched for age and sex.
In an interview Dr Sorin J. Brener,
of Weill Cornell Medical College in
New York, said the results of the study
were in line with others, but considering some of the patients in the latest
study were followed for as long as
15 years, the long-term safety of the
therapy could be considered “very reassuring.”
Though I live in Portugal,
the CMA really helped me
When Silvia Santos developed pregnancy-related cardiomyopathy in Portugal
she could find no mothers there who had been through her experience
I was totally unaware of cardiomyopathy until the day of the
birth of my baby daughter Sara
last August.
I had had a pregnancy without
complications and always expected to have a normal delivery.
It had been a calm, smooth
pregnancy, without diabetes or
high blood pressure or excess
weight, or even nausea. Summer had arrived with swelling
of my feet and tiredness, but
nothing that was considered
abnormal for an expectant
woman in late pregnancy.
A week after my due date
there were still no signs of
labour. That week I climbed
several times the 581 stairs of
Bom Jesus Sanctuary (outside
Braga in northern Portugal)
so that the onset of labour
could occur spontaneously, but
without results.
I started coughing, especially
early in the morning. I also felt
some discomfort when lying
down.
One night I woke up gasping
for air, but after some time sitting up it disappeared. Some
nights, I rested reclining on a
large pillow. After all, some
breathlessness was also normal in late pregnancy.
What is peripartum
cardiomyopathy?
Peripartum cardiomyopathy
is a form of dilated cardiomyopathy that appears in
women typically between the
last month of pregnancy and
up to five months after the
baby is born.
It affects the heart’s ability to
pump sufficient blood around
the body. It can lead to
heart failure and heart
rhythm problems.
It is estimated that around 1
in 10,000 pregnancies is affected.
Many women make good recoveries but may need to be
on medication for the rest
of their lives. In severe
cases, the mother may need
a heart transplant.
I went to the hospital and
mentioned the cough, to
which the obstetrician did
not give any importance. But
during tests I was breathless
to the point of being almost
unable to speak.
The obstetricians asked me if
Page 20
I was nervous and if I had
asthma. Sure, I was nervous –
it was my first pregnancy – but
no I didn’t have asthma.
Then they noticed something
was wrong with my lungs, and
the peripheral arterial desaturation was 85% (normal is
100%). So they called for other
doctors.
They gave me oxygen, but the
level of peripheral arterial desaturation did not return to
normal. The doctor ordered
some blood tests. When he
returned with the results, he
spoke about the possibility of
performing a cesarean section. I
also had an x-ray, which detected fluid in the lungs. So
they called a cardiologist.
Echocardiography was performed with me sitting as I
could not lie down. My heart
had an ejection fraction (EF) of
30-35 per cent (normal is 55 to
60). They asked if anyone in my
family had heart problems and
this question was repeated by
several doctors.
There were no problems
during the cesarean section.
Sara was born fine and
healthy. I immediately went to
the intensive care unit, always
with an oxygen mask to help.
The CMA really helped me (cont’d)
The next morning I asked a
doctor what was wrong with me.
He explained that my heart was
not pumping enough blood, and
the blood, instead of getting to
the whole body, returned to the
lungs which in turn were accumulating fluid.
Twenty four hours after Sara’s
birth, I went to the cardiac intensive care unit. They removed a catheter and reduced
the size of my oxygen mask. I
was improving so I was optimistic. While on the unit the nurses
managed to bring Sara for a
visit. For the first time, I held her
calmly in my lap for ten to 15
minutes and felt the happiness
of being a mother.
Sara would be brought every
afternoon to see me, much to
my happiness and the contentment of all the nurses and
doctors. They would stop everything and run back the curtain to
see her. Most of the time she
was asleep. She had spiky
hair. On the second day, she
reached out and rested her hand
on my face, as one who makes
a caress. I cherish this moment.
I spent three days on the unit.
The oxygen mask disappeared
and only one catheter out of the
four I had was left.
I was taking various medications
(ACE inhibitors and betablockers, antihypertensive drugs, potassium-sparing diuretics, loop
diuretics).
The doctor advised me not to
breastfeed because it would
cause a great strain on the
heart.
Also, there is a study that relates peripartum cardiomyopathy with the cycle of the hormone
prolactin. For this reason, I took
bromocriptine for several weeks.
After I was moved to the cardiology ward they talked about moving me to the obstetric ward and
allowing Sara to stay with me in
my room. I was so excited about
finally being with her all the time,
but it did not happen. The obstetric service was not able to take
me and doctors felt Sara might tire
me and be more exposed to infection.
Af ter f ive days, Sara was
dis charged. My husband Rui Silva
and I asked several family members to help with household
chores and taking care of her.
I got daily updates about her from
my husband through stories, pictures and videos. I watched these
videos over and over in the hospital,
but I have been unable to watch
them since. Her pictures showed
her feeding, bathing, sleeping and
yawning. I just wanted to be with
her and take care of her.
After five more days in the hospital, I had several tests and examinations, including an MRI
which confirmed my diagnosis of
pregnancy
related
cardiomyopathy (peripartum cardiomyopathy).
When I returned home my lungs
were almost clear, but my heart
was still sick. My ejection was
now at 38 per cent.
For the first three months at
home after Sara was born, I
had help all the time to care for
her and to do the household
chores.
In the early days I felt strong emo
-tions: the joy of finally being with
Sara all the time but the sadness
of not be-ing physically able to
take care of her. The mornings
were the hardest part of the day.
I had dizziness, blurred vi-sion
and nausea whenever I stood up.
I spent a lot of time on the
couch or in bed.
Page 21
For a long time I also got tired
with her in my arms, sometimes
even giving her a bottle was too
much effort.
But week after week I improved. I
started being able to walk the
length of the street where we live
with Sara and my husband.
Then my heart recovered a lot. My
ejection fraction is now 48-50 per
cent but I still take medication.
According to the doctor, I could
have another baby, but the heart
problem is likely to happen again.
The idea of going back to the intensive care unit or not seeing
Sara growing up scares me too
much. I am still coping with all that
happened. Every day, I remember
something from the hospital.
I had never heard of peripartum
cardiomyopathy before. No doctor alerted me to the condition.
I searched information about this
disease on the internet, and I
found the Cardiomyopathy Association web-site very helpful.
Several times I read the personal
experience there of Debra Mapp,
who also had peripartum cardiomyopathy.I had no one in Portugal with
the same experience to talk to.
But it was important to me to
know that other mothers had had
similar problems and how they
dealt with the situation.
I want to thank you very much for
sharing your story of peripartum
car-diomyopathy.
Thank you CMA for all the informa
-tion. You do amazing work.
Genetically engineered animal hearts
may help humans
Advances in transplant technology could
pave the way for animal organs to be
used in people.
Researchers say that one day this technology could help solve the problem of donor
organ shortages.
Scientists have transplanted a heart from
a genetically engineered pig into a baboon with its immune system being suppressed to prevent rejection problems.
Cardiomyopathy is one of the main reasons
for heart transplants.
The heart survived in the baboon for more
than 500 days, the researchers from the
National Heart, Lung and Blood Institute
in America reported at this week’s meeting of the American Association for Thoracic Surgery in Toronto.
Pig hearts are close to human hearts in
anatomy. Doctors also already use heart
valves taken from pigs in human surgeries.
Ultimately, researchers want to make pig
hearts transplantable into humans.
The research has not been published in a
peer-reviewed medical journal, but it has
been submitted for publication.
New hand-held ECG
monitor
A new hand-held ECG which lets
doctors remotely monitor a patient’s heart rhythm has gone on
show.
The personal monitor has 12-lead
ECG recording and a 3G cellular
module for transmitting the ECG
reading to a cardiac call centre or a
doctor’s email address.
The data can be transmitted
wherever the patient is or what
time it is, allowing patients to get on
with their lives.
The makers of the HeartView
P12/8 Mobile say the device is the
world’s smallest and most accurate
hand-held 12 lead ECG monitor. It
can help diagnose symptoms and
provide analysis for clinical studies.
Aerotel Medical Systems showed
the device at the GSMA Mobile
World Congress in Barcelona.
The Personal minisized ECG
Page 22
Blood pressure
drug
A drug mostly used to
treat high blood pressure may slow heart
muscle thickness and
scarring in some people
with hypertrophic cardiomyopathy (HCM), a pilot
study has suggested.
Losartan appeared to
slow disease in people
with HCM without obstruction to blood flow
from the heart.
Larger, multicentre research is now needed to
determine whether the
drug should be used in
the management of
HCM, said Dr Yuichi J.
Shimada from Brigham
and Women’s Hospital
and Harvard Medical
School.
Drugs reduce heart thickening
Mice with hypertrophic cardiomyopathy
(HCM) caused by a specific gene mutation
have been treated successfully with a drug
that targets the mutation, say researchers.
By suppressing a faulty protein created by
the gene mutation, the re-searchers reduced the thickening of the mice’s heart
muscle and improved heart function.
Dr Maike Krenz, from the University of
Missouri, has been studying the gene
PTPN11 that links HCM to the genetic conditions Noonan syndrome and Leopard syndrome.
“Previously, not much has been known
about the biochemistry behind the faulty
protein and hypertrophic cardiomyopathy,”
said Dr Krenz, an assistant professor of
medical phar-macology and physiology.
“We know the thickened heart muscle
doesn’t work properly, and we know a
defective Shp2 protein can cause heart muscle to thicken. However, to create an effective treatment, we need to know what Shp2 is
doing inside the heart to cause the defect.”
To test whether they could interrupt the
heart’s hypersensitivity to growth signals, the
researchers gave a chemical compound,
PHPS1, to mice with a mutated gene that
produces the defective Shp2 protein.
“Not only did the compound reduce the
heart thickness to the size of normal heart
muscle, but it also improved the cardiac
pumping,” Dr Krenz said.
“If we could develop an effective treatment
for the disease and improve patients’ heart
function, we could save many people’s
lives.”
Dr Krenz believes the research could be
translated into improved treatments for other
types of heart disease.
Switching off devices
Traffic pollution
Small increases in traffic-related pollutants in the air can trigger a heart
rhythm problem in people with heart
disease, a study has suggested.
The CMA has contributed to a consultation about deactivating heart devices when patients reach the end of
their lives.
A joint statement by the Resuscitation
Council (UK), British Car-diovascular Society and National Council for Palliative
Care will help the medical profession
deal sensitively with patients when
they reach the end of their lives, whether
because of heart failure or another terminal illness such as cancer.
Episodes of atrial fibrillation can be
triggered within two hours of exposure. The pollutants included black
carbon and nitrogen dioxide and triggered problems in patients with internal
defibrillators in Boston, America.
CMAA editors’ note on device removal:
As cremation becomes more popular, we should be aware that we
should tell the funeral directors that the deceased had a heart device.
Lithium batteries can explode in cremation.
ICDs continue to be ‘live’ after the patient’s death and should be turned
off, so that there is no possibility of an electric shock.
Page 23
Study urges
longer detection
times for ICDs
Programming internal defibrillators (ICDs) to delay the time
they take to shock dangerous heart rhythms improves survival and reduces the number of inappropriate shocks, suggests a new study.
By prolonging the detection times, inappropriate shocks
were cut by more than half and survival improved, said the
study of 4,900 patients seen at several hospitals in the UK.
The patients had their ICDs because of previous lifethreatening rhythms or because they were thought to be at
risk of them.
The researchers said the risk of collapse didn’t go up significantly with longer detection times. Instead, the extra time
frequently gave devices a better chance to detect non–lifethreatening arrhythmias like atrial fibrillation and to let temporary irregular rhythms play out on their own.
In light of our findings, current out-of-the-box settings used
by some ICD manufacturers are likely to be too ag-gressive,”
said the researchers led by Dr Paul Scott, from Kings College Hospital NHS Foundation Trust.
He said that in some cases arrhythmia detection times could
be as short as one to three seconds.
Their results highlighted the importance of setting longer default ICD detection times.
Why there were fewer deaths with longer detection times
was unclear, he said, but it may come from less exposure to
potential hazards of shocks and pacing.
“Alternatively, it may be due to some other factor, such as
the avoidance of the treatment patients get in response to the
multiple episodes of ICD therapy (such as antiarrhythmic
“drugs).“
Page 24
CT scans safe, study
A new study in America
has suggested that CT
scans do not interfere with
heart devices.
A CT (computerised tomography) scan is a special
type of X-ray that takes pictures of the brain or spine.
In 2008 US authorities
warned that CT imaging
tests might interfere with
electronic devices, including pacemakers and internal defibrillators (ICDs).
Now researchers who reviewed 10 years’ worth of
CT scans have found no
signs of interference from
CT imaging on implanted
electronic cardiac devices.
The findings have been
published in the Journal of
the American College of
Cardiology.
Women and LVADs
Women are more at risk
than men of suffering bleeding complications after having a heart pump fitted, says
a new study.
The analysis came from
Dr Andrew Boyle from the
Cleveland Clinic in Florida
and colleagues and was
reported in the online
Journal of the American
College of Cardiology.
Dr Samer Najjar, in an accompanying editorial, said
the study should not dissuade doctors from considering the pumps, called
left ventricular assist devices
(LVADs), in women but
should galvanise experts into
finding the causes of the sex
-specific disparity.
Heart membrane to
replace pacemakers?
Scientists have created a 3-D electronic membrane for
the heart that could ultimately replace pacemakers and
internal defibrillators.
The elastic membrane is made of a soft, flexible, silicon
material that fits over the outside layer of the heart’s
wall. Tiny sensors can be printed onto the membrane to
precisely measure things such as temperature and the
heart’s rhythm.
It could ultimately even help pace the heart and shock
it if it developed a dangerous rhythm.
Biomedical engineer Professor Igor Efimov from Washington University in America has been working on the
project with materials scientists.
He said: “Each heart is a different shape. With this
application, we image the patient’s heart through MRI
or CT scan, then extract the image to build a 3-D
model that we can print on a 3-D printer. “We then
mould the shape of the membrane that will constitute
the base of the device deployed on the surface of the
heart.”
He said that ultimately, the membrane could be used to
treat heart diseases, including the heart rhythm disorder
atrial fibrillation.
“Currently, medical devices to treat heart rhythm diseases are essentially based on two electrodes inserted
through the veins and deployed inside the chambers,”
said Prof Efimov.
“Contact with the tissue is only at one or two points,
and it is at a very low resolution. What we want to create is an approach that will allow numerous points of
contact and to correct the problem with high-definition
diagnostics and high-definition therapy.
“When the membrane senses a heart attack or arrhythmia, it can apply a high definition therapy to stop
arrhythmias and prevent sudden cardiac death.”
Page 25
Membrane fits
over the outside
of the heart
Doubts cast on success of stem cell trials
A study looking at the success of various
stem cell trials for heart disease has cast
doubt on some of the findings.
Professor Darrel Francis, one of the study
authors from the National Heart and Lung
Institute at Imperial College London, said:
"Clinical trials involve a huge amount of data
and so it is understandable that discrepancies sometimes arise when researchers are
presenting their findings. However, our
study suggests that these discrepancies can
have a significant impact on the overall results. It is a powerful reminder to all of us
conducting clinical trials to be careful and
vigilant to avoid discrepancies appearing in
the work.
Researchers at Imperial College London say
their study links discrepancies in data with
reported treatment success.
They say that trials appear to be more successful in studies where there are more discrepancies in the trial data.
The researchers looked 49 trials of bone
marrow stem cell therapy for heart disease. Their results, published in the British
Medical Journal, identified and listed over
600 discrepancies in the trial reports.
Bone marrow stem cell therapy involves taking stem cells from the bone marrow in the
hip and infusing them into the heart so they
can turn into new heart muscle cells and
help the heart repair. It is currently experimental and not a standard treatment.
Discrepancies were defined as two or more
reported facts that could not both be accurate because they were logically or mathematically incompatible. For example, one
trial reported that it involved 70 patients,
who were divided into two groups of 35 and
80.
"Unfortunately, our research suggests that
at present, it's not possible to give patients a
clear picture of whether or not bone marrow
stem cell therapy will be an effective treatment for heart disease. “
The researchers found eight trials that each
contained over 20 discrepancies.
A large, carefully planned study involving
thousands of patients was taking place at
Barts & The London NHS Trust, he said.
He hoped this would provide some muchneeded answers.”
The researchers found that the discrepancy
count in a trial was the most important determinant of the improvement in cardiac function reported by that trial.
Trials with fewer and fewer discrepancies
showed progressively smaller improvements
in cardiac function. The five trials with no
discrepancies at all showed an effect size of
zero.
Previous studies looking at the results of lots
of clinical trials have suggested that on average, bone marrow stem cell therapy has a
significant positive effect on improving heart
function. However, some trials have shown
that it successfully improves heart function
whilst others have not. The reasons for this
are unclear.
Page 26
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
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: ______________________________________
Page 27
For details of your nearest
Contact Person please phone:
1300 552 622
(24 hour message bank service)
or
HEARTLINE
1300 362 787
Or visit our website at:
www.cmaa.org.au
Page 28