Tuesdays with Morrie [an old man, a young man, and life's greatest lesson]

I don't remember the last time I read a book so quickly. Maybe the 900-odd page Game of Thrones tomes I've been reading lately have impeded speedy reading enjoyment, but I breezed through Tuesdays with Morrie within a handful of hours. The book was exactly what I needed in my life now.

I've danced around the issue of death and like most people, unless having dealt with a loved one's death face on, have managed to avoid delving too much into thinking about it, because I haven't had to. You'd think that with my recent near death experience (surviving a cardiac arrest) I'd be all over this shit. I've wanted to be but for the most part, I was so overwhelmingly happy to be alive, that I didn't want to think about death too deeply or too often. Having narrowly escaped death's bony embrace, there were so many other immediate things to deal with and think about. Primarily, how I want to live.

I knew this would be a subject matter I would return to sooner or later...in my own time, when I felt ready. I'm interested in how different cultures deal with and what they believe about illness, the older members of society, mortality and anything else related; but I didn't know where to start, nor did I have the appetite to.

One fateful Monday, strolling through Cronulla beach and its local shops, I popped into my new favourite bookshop. After having read all Game of Thrones books on a digital device, I decided to not do that again. Life's too short to be starring into a screen more than you have to, and I wanted the tactile quality of paper and turning pages in my hands again. So I popped into The Best Little Bookshop in Town and asked for help.

"What do you like reading?" asked the shop owner. I'm not sure I reply. I usually like Paulo Coelho but I've read most of his books. I bought the Amy Schumer book off you the other week. It's not something I'd usually go for, in fact, she makes me slightly uncomfortable but I liked that I read something different (that I thought I wouldn't normally like). And I enjoyed it. There was this other book I really liked but I can't remember the name or author....I like ancient history, fiction, not that much into real life stories normally. "Have you heard of Tuesdays with Morrie? It's an international best seller, but more importantly it's a great book, very popular" he replies. He gives me a brief synopsis. It's about a college professor who gets diagnosed with ALS (a terminal neurodegenerative disease that affects nerve cells in the brain and the spinal cord, where your body shuts down til you can't move or breathe anymore) who reconnects with one of his students after nearly 20 years. The book is about one last 'thesis' they write together, summarising their catch-ups in the lead up to the professor's death. It's about the meaning of life.

Perfect I thought. I'm sick of trying to figure out what the meaning of life is for me. It's a constant work in progress. I need a break. I want to find out what some other bozo thinks about it!

So I smashed the book overnight. I couldn't put it down. And then I cried...ugly crying. And then I took two weeks to read it again, slowly, with great big pauses in between for the thoughts to sink in and to cry some more. I even cried in public at a cafe when I was reading it, I couldn't help myself. I guess it really hit home as it succinctly articulated and cemented many of the thoughts I've been having on the topics of death and living a meaningful life.

Mitch Albom (author) with Morrie Schwartz. Photo by Heather Pillar.

I could go through and list the key points for you in short form below (I highlighted them the second time around), but sitting down now in front of my computer and leafing through the book, I realise I wouldn't be doing the story, author or Morrie any justice. And everyone I suspect, may get something different out of it, so if you're interested and ready to delve into something deeper, it's best that you read it for yourself. I couldn't recommend it highly enough for anyone wanting to live a richer life, but particularly people living with chronic or terminal illness/disease.

If you've already read this book, let me know your thoughts below. Are there any other profound books that affected you and you'd recommend to read?

Working Nine to Five

Excuse my 12 or so month hiatus. I've been back at work and since energy and time are both finite, there's been only so much I can fit into my days. More so, I haven't had anything I've wanted to tell you until now.

Like my psychiatrist appointments, I need some time between "sessions" to experience life and let things ferment, to give myself space for observation and to come up with new conclusions and ideas.

Getting back to work has been great for my confidence. It's given me the chance to connect with lots of new people and reconnect with some old friends. I've really enjoyed being able to delve into and focus on projects and feel the sense of achievement from completing tasks; emotions (control, focus and sense of achievement/completion) not often experienced during parenting.

After two clients and three major projects, which spanned 10 months, I was ready for a break. We decided to go to Europe again to visit family and friends and had a lovely (and tiring because YOLO) six weeks away. I really need to rethink the types of trips we do...but that's another story.

Prior to the trip I had sunk so deep into work that I neglected (regular/scheduled) exercise, I had neglected our family and home, and most importantly, I had neglected myself. Amongst all my responsibilities and roles, it's been hard finding a balance, and this seems to be the constant challenge.

Upon our return to Australia, I was barely recovered from jet lag and I had a meeting for another project. I wasn't ready to start again, I really needed some weeks to myself at home to relax, get back to a new sense of normal and work out (consciously) what my next steps would be. Being a consultant and by nature of the work not knowing when the next pay day will be, I told myself I have to take the work, whatever work, when it presents itself. And so I did.

I wasn't in a good place emotionally or physically at the time but I just thought of the money I'd make to replenish our depleted savings after the six week European jaunt. Again I fell into the consumerist cycle most of us fall into. Work - make money - buy shit you don't need - repeat. Which I can deal with under normal circumstances when I actually like the work and the people that I'm working with, and the buying of the shit is holidays to see loved ones (three of the core reasons I get up with pep in the morning and go to work for). But this time around, there was no pep, there was no zest. Instead there was growing dissatisfaction, constant complaining and increased frustration. I was the furthest I had been from myself for a long time and for this I was really angry.

As the weeks progressed, I began to show my frustration at work and I let people know about it. As my scope at work increased, so did my frustration and contempt. I pushed back and managed to make myself redundant from the project about a month earlier than anticipated. I experienced a set of mixed emotions about this scenario: less cash in my pocket than I had budgeted for and sad about no longer being needed, but on the other hand, I now had a new sense of freedom and excitement for life. A renewed sense of hope.

I made room in my life for what I needed, which is the space and time to re-evaluate what's working and what's not; to structure my life accordingly and find my balance. I realise not everyone is that lucky to have the opportunity to do the same. So for this I'm really grateful.

Thanks for tuning in again.

Helping Someone with PTSD

The content for this post is from Helpguide.org

Helping a Loved One or Family Member with Post-Traumatic Stress Disorder

Image courtesy Before It's News

When someone you care about suffers from post-traumatic stress disorder (PTSD), it affects you too. The symptoms of PTSD aren’t easy to live with, and the changes in your loved one can be downright terrifying. You worry that things won’t ever go back to the way they were before. At the same time, you may feel angry about what’s happening to your family, and hurt by your loved one’s distance and moodiness. It’s a stressful situation all around—one that can leave you feeling overwhelmed, even as you try your best to stay strong. The most important thing to know is that you aren’t helpless. Your support can make a huge difference in your partner, friend, or family member’s recovery. But as you do your best to care for someone with PTSD, you also need to take care of yourself.

Understanding the impact of PTSD on family & relationships

PTSD can take a heavy toll on friends and family members, and relationship difficulties are common. It can be hard to understand your loved one’s behavior—why he or she is less affectionate and more volatile. You may feel like you’re walking on eggshells or living with a stranger. You may even be afraid of the person. The symptoms of PTSD can also result in job loss, substance abuse, and other stressful problems that affect the whole family.

It’s hard not to take the symptoms of PTSD personally. When someone you love is distant, anxious, or angry all the time, your relationship suffers. But it’s important to remember that the person may not always have control over his or her behavior. Anger, irritability, depression, apathy, mistrust, and negativity are common PTSD symptoms that your loved one can’t simply choose to turn off. With time and treatment, they will get better, but it’s a gradual process.

Tips for coping with PTSD in the family

• Be patient. Getting better takes time, even when a person is committed to treatment for PTSD. Be patient with the pace of recovery. It’s a process that takes time and often involves setbacks. The important thing is to stay positive and keep at it.
• Educate yourself about PTSD. The more you know about the symptoms, effects, and treatment options, the better equipped you'll be to help your loved one, understand what he or she is going through, and keep things in perspective.
• Don’t pressure your loved one into talking. It can be very difficult for people with PTSD to talk about their traumatic experiences. For some, it can even make things worse. Instead of trying to force it, just let them know you’re willing to listen when they’re ready.
• Take care of your emotional and physical health. As the saying goes, put on your own oxygen mask first. You won’t be any good to your loved one if you are burned out, sick, or exhausted.
• Accept (and expect) mixed feelings. As you go through the emotional wringer, be prepared for a complicated mix of feelings—some of which you’ll never want to admit. Just remember, having negative feelings toward your family member doesn’t mean you don’t love them.

PTSD & the family: Social support is vital to recovery

It’s common for people with PTSD to withdraw from their friends and family. While it’s important to respect your loved one’s boundaries, too much isolation is unhealthy. Your comfort and support can help a person with PTSD overcome feelings of helplessness, grief, and despair. In fact, trauma experts claim that receiving love from others is the most important factor in PTSD recovery.
Knowing how to best demonstrate your love and support, however, isn’t always easy. You can’t be your family member’s therapist, and you can’t force him or her to get better. But you can play a major role in the healing process by spending time together and listening carefully.

Why someone with PTSD might be reluctant to seek support

• Being afraid of losing control
• Feeling weak or ashamed
• Not wanting to burden others
• Believing that others won’t understand
• Wanting to avoid thinking about what happened
• Fear that others will judge or pity them

How to be a good listener

While you shouldn’t push a person with PTSD to talk, you can let them know you’re available for them. If they do choose to share, try to listen without expectations or judgments. Make it clear that you’re interested and that you care, but don’t worry about giving advice. Leave that to the professionals. Instead, do your best to simply take in what they’re saying. Never underestimate how much the act of empathetic listening can help.

A person with PTSD may need to talk about the traumatic event over and over again. This is part of the healing process, so avoid the temptation to tell your loved one to stop rehashing the past and move on. Instead, offer to talk as many times as needed. And remember, it’s okay to dislike what you hear. Some of the things your loved one tells you might be very hard to listen to. But it’s important to respect their feelings and reactions. If you come across as disapproving, horrified, or judgmental, they are unlikely to open up to you again.

Communication Pitfalls to Avoid

• Giving easy answers or blithely telling the person everything is going to be okay
• Stopping the person from talking about their feelings or fears
• Offering unsolicited advice or telling the person what he or she “should” do
• Blaming all of your relationship or family problems on the person’s PTSD
• Invalidating, minimizing, or denying the person’s experience
• Telling the person to “get over it” or “snap out of it”
• Giving ultimatums or making threats or demands
• Making the person feel weak because they aren’t coping as well as others
• Telling the person they were lucky it wasn’t worse
• Taking over with your own personal experiences or feelings

PTSD & the family: Tips for rebuilding trust and safety

Trauma alters the way a person sees the world, making it seem like a perpetually dangerous and frightening place. It also damages people’s ability to trust others and themselves. Anything you can do to rebuild your loved one’s sense of security will contribute to recovery. This means cultivating a safe environment, acting in a dependable and reassuring way, and stepping in to help when needed. But it also means finding ways to empower the person. Smothering someone with PTSD or doing things for them that they’re capable of doing for themselves is counterproductive. Better to build their confidence and self-trust by giving them more choices and control.

Making a Cardiac Comeback

How will you write your comeback story?

A question that has plagued me since I survived a sudden out of hospital cardiac arrest in March 2014. Mine, now anyway, is more an of existential question, of finding a way to make the shock and struggle mean something, a way to help other people, a way to have an impact on the world. But for a lot of people in the same boat, including people dealing with heart disease, it's more practical than that. It's about achieving a certain level and quality of life on a daily basis that someone without health issues most likely takes for granted.

Last Tuesday (11 August) I attended the ICD Support Group at Royal North Shore Hospital. I'd been to a couple before, but this one focused on the guest speaker Dr Samuel Sears from East Carolina University. Dr Sears is a Clinical Psychologist who specialises on the psychological care of people living with an ICD. You can access his bio here.

Apart from being a really warm, funny, approachable and knowledgeable guy, what became abundantly clear is his passion for the area of mental health for patients with ICDs. This is the area I struggled with the most post my cardiac arrest so I too am very passionate about it. It also seems to be an area lacking in Australia. As far as my knowledge extends, there doesn't seem to be someone like Dr Sears who specialises in a combination of cardiology and psychology. Specialised care has to be sought independently for either a psychologist or psychiatrist through a referral from your GP or Cardiologist. It was therefore refreshing to meet and listen to Dr Sears speak about this topic because he understands both sides of the coin: the mental and physical.

His focus is on providing his patients confidence in facing their fears and struggles in the face of threat. Some challenges that ICD patients have to tackle include:

1. Coping with their cardiac condition
2. Coping with an ICD
3. Resuming activity and quality of life

In the face of the above challenges, the aim of his talk was to: increase our understanding in what it means to be confident; as well as activate one strategy that each audience member believes will help them lead a more confident life.

Dr Sears presented findings from some recent medical studies.The gist of some of these was the discovery of distress, depression and anxiety experienced by patients with ICDs and their families; and the constant fear they live with which inhibits them from living their life. Furthermore this fear leads to a lack of engagement in activities. The most profound study presented was that of exercise and ICDs conducted over 2.2 years and on 98,000 patients. The discovery was that on average, these patients moved less than 2 hours per day, which means they spent at least 22 hours per day not moving. When the survival rate was looked at in terms of most active versus least active, the study concluded that the most active patients were most likely to be alive four years later. When talking about activity we're not talking anything complicated or extreme either - just some form of basic movement, as opposed to being sedentary. Conclusion: some, any movement is better than none.

In fact, data now suggests that doctors have been too safe with the prescription of types of activities that heart/ICD patients can partake in. What they do know is that muscles, joints, the human body and mind have been designed to function better as a whole with movement. Of course it is important to note that competitive athleticism remains very much a grey area and clinical judgement should be made by a cardiologist.

Dr Sears eloquently went on to discuss confidence in cardiac patients, how to achieve quality of life, and perceived safety and confidence in the context of threat. Some standout points:

• Quality of life (QOL) is personal and point in time dependant
• Your definition of QOL is under your control
• Confident living is the fuel for the achievement of QOL
• Arrhythmia is random, don't know for certain what causes it
• Doesn't matter what causes arrhythmia, but you have strategies to keep you safe (medicines, ICDs and monitoring)
• Can't control arrhythmia but don't allow it to control you!
• When it comes to confident thinking and living, work out what activities are your goal, and work towards these
• These activities should make you feel alive and well. Think about what activities you liked to do in the past, before getting an ICD or having an ICD shock?
• Be proactive, test the limits safely
• ICD gives safety to make a cardiac comeback, essentially helping you deal with a condition that is spontaneous, unpredictable and potentially life threatening
• QOL is an achievement, not an entitlement
• A shift from victim to survivor reduces stress
• Mental health is what we believe about the future; it's earned and deliberate
• Have an ICD shock plan
• Foster confident relationships by creating intimacy and finding ways to feel closer to the people who love you

People with heart disease are faced with their own mortality in a very real and immediate manner. Heart disease which some may think makes you weaker, actually makes you stronger. Regardless of the adversity in your life it's up to you to decide whether you face it as a victim or a survivor.

That's a lesson I learned early on in life and I guess what drives and motivates me to take action rather than sit back and be a passenger in my life.

So what was my one strategy I took out of this presentation that will help me lead a confident life? It was the reassurance that I'm doing everything I can possibly be doing to prolong my life: medication, ICD, regular monitoring by my cardiologist and GP, regular exercise, balanced eating, minimising stress, and most importantly taking time out to have fun and create and enjoy wonderful moments with the people I love.

How will I write my cardiac comeback? I think the above is a damn good start. Only time will tell what happens and evolves beyond that.
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Some interesting facts and statistics:

• The first human ICD implant occurred in 1980.
• There's 4-6% chance of and ICD shock in an average year.
• Activity avoidance in kids is 84.5% and 39-55% in adults.
• A weaker heart (e.g. 35% ejection fraction) has a tendency to act irregular.
• Risk of driving in ICD patients is the same as other people - it's equally as dangerous.

You can view a similar presentation that Dr Sears has done before, The Medical Trapeze: Living Confidently With a Safety Net.

Greetings from Byron Bay

When my shrink suggested I take regular time out to myself I thought "good luck" and "that will be nice". But months later I went ahead and made it a reality by committing and booking some flights. I didn't give it much thought, just took the action. Days leading up to my weekend away I was getting cold feet and contemplating cancelling. I guess I was fearful of getting out of my comfort zone and to some extend felt guilty leaving my family behind. Now that I'm here, I wish I could go back to those few moments and bitch slap myself! 

Anzac Day got me thinking: we celebrate the sacrifice that people made, essentially we are celebrating their death. So why not celebrate life as well?

To take two days/nights out of normal life, in the scheme of things, is not a big deal, but it can make a massive world of difference. So much so that I've decided to make this an annual weekend away, to coincide with my anniversary of the cardiac arrest and to celebrate living. 

Rest, relaxation, rejuvenation, reflection and taking stock. Whatever form it takes, be it an hour or two taking a long walk, having a coffee, seeing a movie, sleeping in or having some time away; we all need it.

"Get busy living, or get busy dying".

Today marks the one year anniversary of my cardiac arrest. When I woke up this morning, it wasn't the first thing I thought of. As my husband was leaving for work I was about to remind him, but I caught my tongue between my teeth and said nothing.

I have no need to relive the event or period surrounding it. What I have are no feelings. It's not even a memory. It's a tiny speckle in the far distance, of an event my husband has described to me. What I have is gratitude for the memory loss I have surrounding the event and for the psychiatric assistance I've had to get over the resounding post-traumatic stress disorder (PTSD) associated with it. It seems the shrink sessions worked...

Love this Angel's expression: "I have a hammer
and a book, I got shit to do, I'm busy, leave me alone!"

I love the quote from Shawshank Redemption: "Get busy living, or get busy dying". For me, it's become as simple a choice as that. My focus has been on health (healthy eating; exercise; minimising stress; resting, when possible with a two year old) and getting on with life. I'm busy living.

I went to a parenting course some weeks back where they discussed "labeling" our kids. The concept took me straight back to childhood: I was always the sick one, the weak one, I had to be constantly careful and looked after, dressed like an onion so I wouldn't catch a cold, excluded from physical activities and ostracised. I had worked really hard before the cardiac arrest to remove the "sick" label from my identity, and after the cardiac arrest, it was hard not yielding to it again. I realised in that moment I was no longer that sick person with a heart problem, or the cardiac arrest victim, I hadn't been for some time now.

50 Cent puts it well in his song Many Men (Wish Death):

Sunny days wouldn't be special, if it wasn't for rain.
Joy wouldn't feel so good, if it wasn't for pain.
Death gotta be easy, 'cause life is hard.
It'll leave you physically, mentally, and emotionally scarred.

I like these lyrics because they remind me that life is about taking the bad with the good and getting on with it. I'd rather be physically, mentally and emotionally scarred, than not be at all. And believe me, I have plenty of scars!

So to that I say: happy anniversary; and happy living to everyone!

Inaugural ACHD Education Day

Saturday 21 February 2015 marked the Inaugural ACHD Education Day. The event was run by HeartKids and held at the Mercure Hotel in Sydney.

Considering it was the first ever event of it's kind, the day included a good mix of content and professionals as speakers, including:

1. Professor David S Celermajer AO FAA (Cardiologist at RPAH; Head of Cardiology at University of Sydney; and Clinical Director of the Heart Research Institute)
2. Associate Professor Edwin Kirk (Clinical Geneticist)
3. Dr David Tanous (Cardiologist at Westmead Hospital)
4. Dr Rachael Cordina (Staff Specialist in Cardiology at RPAH)
5. Adjunct Associate Professor Amanda Gordon (Clinical and Health Psychologist)

Image courtesy Uni of Sydney

Professor David Celermajer was clearly the draw card for the day and (not surprisingly) it became quickly evident how knowledgeable and well respected he is in his field, as well as what a huge advocate he is of adult congenital heart disease. His expertise in the field of ACHD has not been an easy or short feat - it has taken him 16 years to fully qualify; illustrating his dedication and passion for his life's work.

He began by going through some startling statistics and facts, which I've summarised below.

During the 1970's and 1980's, it was mainly just children with congenital heart disease. There are now more adults with congenital heart disease than children. In the 1970's only simpler heart problems could be fixed whereas now, almost anything can be treated. This means a much higher survival rate and therefore adult population with CHD.

NSW has approximately 10,000 cases of adults with CHD.

• Only 2,500-3,000 of these cases are seeking or have sought care in an expert ACHD centre.
• There are 500-600 new cases of CHD which join the adults annually, increasing in number and complexity.

In Australia there are 55 cardiologists specialising in children with congenital heart disease vs. only seven cardiologists specialising in adults with congenital heart disease. I found this fact astounding, which further confirmed why I had such trouble finding a specialist cardiologist for my personal care. Not only are there not many ACHD specialists in Australia, in my view (and this may now be changing), there also seems to be little awareness by generalist cardiologists of the ACHD specialists that do exist.

The ACHD population is expected to grow 5% p.a. Translating to one in 150 people having some form of congenital hear disease, or 6-7 per 1,000 live births (including congenital problems which appear later in life).

Professor Celermajer also explained different heart conditions, which was really interesting. These were by no means definitive, but clearly outlined how every CHD case is complicated and so very unique.

Apart from caring for his patients, university and Heart Research Institute commitments, Professor Celermajer has also dedicated (it seems a vast amount of) time to establishing comprehensive adult congenital heart disease centres, which I've now listed on my blog. Furthermore he's been working intimately with the Cardiac Society of Australia and New Zealand to develop a paper outlining recommendations for the standards of care for adults with CHD. This is a massive piece of work and it's required due to the massive struggle that exists with transition of care from children to adults, which is something I can relate to. The main points outlined in this paper are:

1. ACHD is a relatively new and rapidly growing area of need.
2. The recommended (adequate) standards of care.
3.  Whole life planning (holistic care).
4. Paediatric patients transitioning to specialist care centres for adults when they come of age.

He had opened his speech by stating what a burden it is living with ACHD. With those words I felt a massive relief to know that someone else really understands, through his experience and exposure to ACHD, what I and everyone else there present in that room, go through on a daily basis. He came full circle and closed his talk by outlining some of the psychosocial aspects affecting patients with ACHD, which are highly important as they apply to our day to day living:

• exercise
• employment
• insurance
• intellectual and social development
• contraception and family planning.

As CHD patients there isn't much we can do about our physical limitations, but we do have to make daily decisions about other factors in our life and have to always take into consideration how these affect our CHD. All the technical and academic aspects aside, what really stood out for me was the empathy Professor Celermajer feels for patients with ACHD. It is comforting to know there are people out there that understand and that we have the established ACHD specialist centres where adults living with CHD can get tailored care and assistance for all areas in their life.

Associate Professor Edwin Kirk spoke about his area of specialty: genetics. He's been interested in genetics associated with congenital heart disease for over 15 years. Most of the information went over my head and there were a lot of charts used as visual aids, so difficult to transcribe. Basically what I took out from that presentation is that genetics is such a wide area of study and so complicated, that, to simplify, there's not much that they actually do know. CHD is due to multifactorial (meaning many factors) inheritance. They think it's approximately 70% genetics and 30% environmental. 1% of babies born have a chance of having some form of CHD.

What I understood from this information is that unless there is a clear pattern of heart disease in your family tree, then the reason you have it is most likely random, pure and simple luck.

Image courtesy zoominfo

Dr David Tanous specialises in CHD and pregnancy, having completed a fellowship in congenital heart disease and heart disease in pregnancy at the University of Toronto. He too had some interesting facts to share.

• The female body works extremely hard during pregnancy, there's a 50% increase in fluid volume, 30-50% increase in cardiac output and 30% increase in heart rate. It's between 28-30 weeks where the cardiac output peaks. These factors can have a massive impact on someone healthy, let alone a woman with heart disease.
• The risk of transmission of heart disease to offspring is 3-5%.
• Caesarian-section is not proven to be a better delivery method when it concerns the load on the heart. 
• There is added complexity when anesthetics are thrown in the mix. 
• Certain medications can impact a fetus adversely.

Therefore a good assessment before pregnancy is far more important, with preconception planning preferable. There needs to be a team approach to ensure that all the factors mentioned above (and more) are taken into account, including but not limited to:

1. Cardiologist
2. Obstetrician
3. Anesthetist
4. GP

Some useful resources Dr Tanous shared are listed below.

Mothersafe - NSW Government service assisting patients and their healthcare providers with concerns around exposures during pregnancy and breastfeeding

Heart Disease and Pregnancy - resource for patients and healthcare professionals outlining the risks and management strategies associated with pregnancy for women with heart disease.

Image courtesy HRI

Dr Rachael Cordina is the newest addition to the RPAH team and her passion lies in ACHD and exercise.

Patients with ACHD are automatically at an increased risk of being overweight and inactive. This can be due to many reasons such as being wrapped in cotton wool from early in life, or physical limitations or symptoms which make it difficult to exercise.

The good news is, habitual exercise has been shown to have a greater impact on fitness and exercise capacity than the heart muscle function itself. A tiny bit of exercise is better than no exercise at all, for example a slow walk for 10 minutes per day.

• The recommendation is that people with CHD should complete an exercise test to determine their peak heart rate, as there is no clear cut formula.
• Some sporting activities can be fatal to people with certain heart conditions. Always speak to your cardiologist to obtain approval for undertaking any exercise program or physical activity. 
• Even people with complex heart issues can exercise, but this needs to be done in a supervised environment under specialist care (exercise physiologist) with a tailored program.
• People with defibrillators and pacemakers should avoid contact sports and long distance swimming.
• Everybody with CHD can benefit from regular exercise.

Exercise and CHD is an area I too am very passionate about. Prior to my pregnancy and post my cardiac arrest, regular exercise helped me not only physically, but also mentally. I feel like it's one of the few positive things I can do to help my condition. In most cases it won't cure your condition, but it is a great preventative measure to help keep other problems or complications at bay. After my cardiac arrest I had a major realisation: just because I have CHD, does not mean I am exempt from other health issues. I don't see the point in exposing myself to greater risk of anxiety, cholesterol, diabetes, obesity, heart attack, or osteoporosis. So the only thing I can do is minimise these risks by exercising.

Image courtesy Armchair Psychology

Adjunct Associate Professor Amanda Gordon is a clinical and health psychologist in private practice, helping individuals with chronic illness and their families manage their lives and relationships. She began by emphasising the mind and body connection, that both are equally as important. Congenital heart disease although limiting, is not visible. So this makes it harder for others to empathise or understand. Surely, if you look fine, you must be fine?

The main areas covered for someone suffering from a chronic illness were:

• nurturing your relationships
• coping strategies
• self care
• building a support network
• managing loss and grief

Some helpful advice summarised below:

• Be informed about your disease, the more you know, the better you'll do.
• Accept limitations, but also the gifts.
• Positive psychology: focus on what's going well, rather than what is going wrong.

The three blessings is a technique Professor Gordon shared to help remain positive. It consists of keeping a gratitude journal, where you write three good things that happen every day. This can be a reference for your yourself when you are having a bad day or period, or something to share with your loved ones. Three x 365 days in a year =  1,095 great things to look back on every year.  

I'm a strong believer in our emotional well being having an impact on our health and manifesting physically. I think the three blessings can be a good technique particularly if negative thoughts tend to usually overpower the good ones, it helps refocus. Why spend our precious time being miserable...?

I am also very passionate about mental healthcare in general, but particularly when suffering from a chronic illness or having experienced a traumatic event. Mental well being is a minefield.  The information presented above is overly simplified and high level and perhaps, not as practical or tangible as some people may require it to be. Every person's condition and experiences are completely unique, so like physical exercise for an adult with CHD, I believe that tailored care is required. And seeing a psychologist, psychiatrist or counsellor one on one will be able to provide this specialised care, consisting of advice and techniques that should work for the individual.

Finally Jann Kingston, the CEO of Heartkids gave a short talk. She explained this day was organised because there was a demand for it because once heart kids grow up, there is nowhere to refer them to. Heartkids are working on a registry for CHD, this will help collate data to be able to develop further services and help people with CHD stay connected to these services.

 

The key points from the day for me were:

1. ACHD is a growing area increasing in size and complexity. Holistic care is required from cradle to the grave, encompassing all areas of life.
2. If you're suffering from CHD, ensure to be seen at least once by an established ACHD centre listed here.
3. Prevention is better than cure in context of pregnancy and ACHD. Pre-plan and enlist a team approach to managing your pregnancy.
4. Some exercise is better than no exercise.
5. Always speak to your cardiologist to obtain approval for undertaking any exercise program or physical activity. If possible, speak to an exercise physiologist for a tailored program.
6. Best to be well informed about your personal condition and state of health.
7. Nurture and look after yourself.

Some concerns, observations or comments that came up from the audience on the day were:

• There is no comprehensive guide of all heart conditions.
• There isn't a comprehensive list of cardiac programs or exercise physiologist gyms where adults with CHD can go to.
• Physicians need resources as much as patients do for example regional or non specialist doctors.
• Lack of quality information to help increase medical support and funding.
• No official organisation for adults with CHD.
• People are uninformed about the services available to them.
• Not sure of the best channels of communication.
• Development of some sort of mentoring program for children and adults with CHD.
• The clear need for a support group. The most frequent comment made by attendees was how good it was to connect with other adults suffering from CHD.

The intention is that this will become an annual event, the success and likelihood of which was pegged on this first off event in Sydney. Many of us suggested that we looked at moving it around Australia, so the location is not static and the event can be accessible to more adults with CHD.

All in all it was a wonderfully informative and touching day. Apart from learning many interesting facts and how to access some very useful resources, it was the connections with people that affected me the most. Some people shared some very personal and painful stories and for their (and the speakers') openness, experiences, love and kindness, I thank them.