"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.