Living with Adult Congenital Heart Disease

Welcome to My World

noreply@blogger.com (Unknown) — Mon, 06 Apr 2020 15:24:00 +0000

What an exceptional time to be alive. The world interconnected in a waking nightmare, with the worst (most likely) yet to come.

Coronavirus, COVID-19, novel coronavirus, SARS-CoV-2, The Rona (in Australia anyway), whatever you want to call it, has brought the world to its knees. It’s invisible, it’s not biased, it's deadly and we still have no way to beat it. The best strategy is not to contract it in the first place. Wash hands, quarantine, wash hands, stay away from people (at least 1.5m), wash hands, don’t touch your face, wash hands, cough and sneeze into your elbow, wash hands - oh I said that already. I need some hand cream pronto!

The other side to all this is the mental impact and toll this is having on us. There’s still stupid people out there living in their own bubble thinking they can’t be affected nor do they have any social responsibility to others – let’s leave those fuckwits out of this. No doubt the rest of us living in reality and particularly being in the vulnerable part of the population, have clued into our own sense of mortality and existentialism, if we hadn’t before. (How can you not be when coverage and infection are so widespread; or simply just by sensing the eerie vibe out there?)

I was talking to a friend a few months ago who unfortunately had a very bad car accident. She thankfully survived with minimal bodily damage. The accident should have been fatal but thank whatever out there, dumb fucking luck, it wasn’t. I could tell immediately that she was just falling over the edge into the long dark spiral of PTSD (she was approximately 4 weeks post-accident, which is the common amount of time before PTSD kicks in). She was frantic, contemplative, shell-shocked, in disbelief, depressed yet elated. I just listened to the outpouring of information. She couldn’t comprehend that the night before the accident could have been the last time she ever tucked her daughter into bed. What can you say to that, to any of it? Most times the best thing to do is shut the fuck up and listen. Unsubstantiated meaningless niceties, wisdom or positivity don’t cut it. My husband piped up eventually to break the desperate silence. He told her if anyone can understand how she feels, that I can. I know down to the deep dark core of her soul exactly how she feels. I’ve been her. I should have died at least twice now (fuck I’m losing count) from a congenital heart defect and cardiac arrest, but I didn’t. I’ve been on this PTSD train before, toot toot all aboard. Perhaps I should have reveled in the fact that out of my friends, I wasn’t alone anymore. Instead I was sad that she must go through this. The only thing that gives me some solace is that I’m available to her if and when she decides she needs me.

People experiencing this pandemic in quarantine from their own houses doesn’t compare to having a near fatal car accident, or cardiac arrest. But what these experiences have in common is that they force people to pause, to take stock, to reflect on themselves, their lives and the world around them. I feel confident that most people out there whether you've been directly affected by COVID-19 or not – yes I’m talking to you – have now experienced this moment: where a sudden existential dark emptiness casts over your mind and seeps into the middle of your chest to take residence in your soul. It’s that dreaded moment of dawning, or rather setting, where you realise within the being of your cells that one day, you will die; and at the same time just how precious and finite life really is. It’s one of the truest and breathtakingly bittersweet moments in one’s existence. The first time I felt it I must have been no more than nine years old. I was sitting on the grey carpeted floor in my bedroom contemplating all that is life. Naturally I came to that unsettling conclusion. And just like most people, I shook it off and kept going about my business.

We all know this truth intellectually, but to understand it in the depths of your soul is something else. It’s the unique experience reserved for people having gone through a near death experience, having been in war, tending to the sick and dying, being the sick and dying. And now it’s for the masses, televised and transmitted to your lounge room 24/7.

All the things you’re feeling now, during this pandemic, that’s me, feeling those things and having those morbid thoughts all the time.

Welcome to my world.

It’s a waking nightmare we’re all living, it’s difficult to comprehend our new reality. You distract yourself and go to sleep and try to escape it and maybe you’re lucky and you do. With my PTSD, there’s no escape. I’m living trapped in this endless cycle of mental and emotional exhaustion where at times the only choice is to become numb. I stay awake to try to distract myself from thoughts of death, what if scenarios and that creeping existential dark emptiness that keeps seeping through me trying to drown me every chance it gets. I’m too scared to go to sleep in case I don’t wake up again. Eventually when I do sleep, my anxieties and fears pervade my sleep to form nightmares. Sometimes I wake suddenly in the middle of the night gasping for air to violently, as quickly as possible, fill my lungs to know that I’m alive; and then I’m too scared to go to sleep again because I’m so grateful to be alive and terrified of dying all at the same time. When I wake up for good, I’m thoroughly spent, zombified, groggy, fatigued. Having more sleep to fend off the fatigue makes it worse because the nightmares are so vivid and visceral, they exhaust me further and for longer.

It takes time, work and kindness to oneself to unravel this cycle, to fight the PTSD and come out the other end as a highly functioning human being; to seek out the light as you move away from the darkness.

Another friend’s mother suddenly passed away about a month ago overseas. She had visited Australia some months prior where I distinctly remember my last interaction with her. I had gone to pick up my daughter from their place and she asked if I wanted a coffee. I wasn’t particularly in the mood for a drink but accepted regardless because I thought to myself I’m not sure when, if ever I’m going to see her again. Probably a morbid thought for the average person, but this is now my modus operandi, it has been most of my life, but more pronounced since my first cardiac arrest. Most interactions I have, I make a choice to treat it as being potentially the last one. Because one thing my congenital heart defect and cardiac arrests have taught me, is who the fuck knows what’s in store for any of us? As shocking as the news of her passing was (she was super healthy and active, nor too old), I was grateful we had that coffee together where I got to find out about her life and love of bike riding through nature, that essentially, I shut the fuck up, listened and got to have a genuine connection with her over that handful of minutes. All it takes is a pause, to be authentic and show someone that they matter, that they’re just as human as you are. A smile, a laugh, an inquiry or some banter with the checkout person in the supermarket to make a difference and to potentially make a person’s day, or yours one day down the track. To live without regret that you’ve said and done everything you’ve wanted to, that you’ll be remembered as that kind person, not the asshole. For me it’s simple: it’s to tell my family and friends I love them when we chat, or when the mood strikes; to hug them just that little bit longer and to take in their scent (creepy I know, but you take what you can when your immediate family lives abroad and interstate); the weekly phone call; it’s the good morning in passing; the kiss, hug and eye contact hello when my husband gets home from work; and it’s the kiss and hug goodnight as I tuck my daughter into bed. If you're wondering, I smell her also, the most out of all people, my husband a close second. They’re the only things I can control and that matter the most to me because when the end comes, we can only hold on to the memories we made and the last interactions we had with people.

The world is so strange right now. It’s scary but it’s also beautiful and hopeful. Breathe in the air, it means you’re alive. Hug your loved ones or yourself, because you love them. Talk less and listen more, because we’re always learning. Take joy in the micro things because as big as the world is, we should all just stay home in our little universe for now. And remember, you’re not alone, we’re all in this together and we’re taking it one day at a time. As for today, I’m glad I’m still here. This is our world now.

Rhythmic composition in yellow green minor (1919), Roy de Maistre

The Roller Coaster of Congenital Heart Disease (or Pushing a Boulder Up a Hill)

noreply@blogger.com (Unknown) — Sat, 17 Aug 2019 09:41:00 +0000

I'm still alive. Barely. This has been a shitty year.

I'll get you caught up since we last spoke in February 2017. I ended up getting (what seemed on paper) an awesome job at a prestigious organisation. It wasn't in reality: neither awesome or prestigious; and I never got the chance to truly do the job I was hired for. A more accurate description is chaotic, a lost cause. I was there for approximately 16 months. Why did I stay there that long, after I had gauged the level of chaos within four weeks of having arrived? I don't give in that easily. I'm a dog with a bone. If you have a problem, I'll work my ass off to try and fix it because that's who I am. Maybe I shouldn't get that emotionally involved or have such high expectations of organisational structures or people? But that's not who I am, I don't put up with half-arsed and I care about the quality of work I produce and the impact I have on others. I want to contribute, make life better for others around me and leave my corner of the world that little bit of a better place than what it was before.

It was weird, that place was so seductive, its people with such compelling stories and promises, with a decent job description, pay and benefits package and the promise of things getting better. I was lulled into a false sense of security that preyed on my loyalty, hard work ethic, commitment and natural inclination towards problem solving. It was like an abusive relationship: I kept on going back because I was promised things would be different next time, but they weren't. In fact they kept getting worse.

Something I haven't experienced before is the chronic stress element. It differs from standard stress, where you get pushed for a short period and then the valve is opened to release pressure and you get back to an even playing field again. Instead, chronic stress builds up over an extended period of time, constantly rising until something massive, like Chernobyl happens. There's warning signs, but you're so used to the stress and long hours (because that's your standard level of operation now) that you ignore or try to poorly manage the warning signs...and then BANG!

16 months of chronic stress and three heart incidents later, I accepted my reality: either that place was going to kill me, or I quit. I did the latter and I've been off work and recovering from my last incident for five and a half months already. I'm still angry though. I'm angry at myself for putting up with bullshit and not being kind to myself. I'm angry at the organisation and its people that didn't perform their duty of care.

I sometimes forget that I have limits, that my heart and energy levels aren't as strong as someone who was born without heart issues. I forget because I can't sit idle waiting for my condition to claim me. I want to live my precious life and enjoy it just as much as anyone else, I want to challenge my mind and offer value to others without constantly thinking about illness or death.

But now I'm giving myself time to decompress and reflect. I'm learning my lessons and implementing strategies to better manage myself and my health. That's the beauty and often frustration of life: the power of retrospect and growth as an individual. Its a gradual, cumulative and an imperfect process.

I was incident free for over 3 years post having my defibrillator inserted. Then the job with the chronic stress happened and so did these incidents during extreme and prolonged periods of stress and exhaustion:

Cardiac arrest, one appropriate and successful defibrillator shock to revert ventricular tachycardia - six months into the job
Atrial fibrillation, hospitalisation with transoesophageal echocardiogram (TOE) and cardioversion - nine months into the job
Cardiac arrest, six consecutive and appropriate defibrillator shocks, with sixth successful in reverting ventricular tachycardia; cardiothoracic surgery for defibrillator replacement, medication change, rehab - 16 months into the job

There can never be definitive reasoning as to why these incidents happen, but doctors have a good idea. Stress and depression don't help, studies link these clearly to arrhythmias, particularly atrial fibrillation. Having congenital heart disease doesn't help - fucked heart from the get go, which puts patients into a higher risk category of having more complications or issues throughout their life. And finally scar tissue from open heart surgery can also cause arrhythmias. Or maybe it was a virus that weakened and affected my heart? Take a pick, I've had it all. And the severe stress and exhaustion made it so much worse.

People particularly in this modern day and age want a quick fix, a one pill solution, a reason they can grasp onto and fix. The best unsolicited advice I got from a family member recently was to fix my diet. I guess I shouldn't eat that donut or worry about all the other factors that come into play? Fuck it, I'm eating the donut.

One of the hardest things in this life is to live with uncertainty. People try to help, to simplify, to process.

There's limitations and doctors aren't gods. We're also all different constitutions that have our own way of ticking and working with genetic and environmental factors coming into play. The way modern health has advanced and information is disseminated makes us have a collective cultural mindset of being invincible and immortal. We're not and we don't have all the answers. Nature and life are both a beautiful and ugly miraculous mystery.

I've been here before. I've been through this. I've got this. This wasn't my first cardiac arrest and it's probably not going to be my last.

I get moments of emotional weakness and complacency too. After my first out of hospital sudden cardiac arrest in 2014, I satiated my uncertainty by convincing myself that it was most likely a one off random event and the defibrillator was my insurance policy. I know better now. It's my survival mechanism. Until other heart complications; or other health issues or old age get me, just like any of us.

The last year and half has been at times a horrible nightmare; and at others a beautiful ethereal dream.

In their book 'A Beginner's Guide to the End', Miller and Berger briefly talk about major chronic diseases and their patterns. They describe heart disease as having the pattern profile of a roller coaster. That's right, with the constant ups and downs, with good periods and bad ones. Where you're in hospital feeling rubbish and terrified for our life one day and the next you're recovered (for now), elated and discharged to go home to resume your normal life.

That's been my year. And here I am again, picking up the pieces and getting on with it. But it's alright, I've got this. I told you: I've been here before.

It's familiar, but I wouldn't say that it gets easier. The darkness in my mind is real, with the insomnia and the sheer terror of going to sleep because I think I might die during the night. And the anxiety is taken up a notch or five now. Not only from the panic of dying, but I'm also emotionally paralysed from entering the work place again because I'm traumatised from my last job.

There's a Greek myth that stuck with me recently: the story of the great Corinthian King Sisyphus. He was so cunning that he captured and escaped death. For this, he was eternally punished in Hades to push a boulder up a hill, which would then roll down upon reaching the hill's summit. Push, roll, repeat. For eternity. A fruitless and laborious task. A lesson in how we are unable to avoid the inevitable. Death and taxes come for us all.

So here I am, call me Sisyphus. Whether I'm riding a roller coaster or pushing a boulder up a hill, I'm stuck in this perpetual loop with no control, but I keep going. Welcome to life.

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

noreply@blogger.com (Unknown) — Sat, 18 Feb 2017 13:19:00 +0000

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

noreply@blogger.com (Unknown) — Wed, 12 Oct 2016 04:57:00 +0000

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

noreply@blogger.com (Unknown) — Mon, 31 Aug 2015 14:36:00 +0000

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

noreply@blogger.com (Unknown) — Tue, 18 Aug 2015 13:16:00 +0000

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:

Coping with their cardiac condition
Coping with an ICD
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.
----------------------------------------------------------
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

noreply@blogger.com (Unknown) — Sat, 25 Apr 2015 04:19:00 +0000

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".

noreply@blogger.com (Unknown) — Tue, 31 Mar 2015 02:51:00 +0000

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

noreply@blogger.com (Unknown) — Sat, 07 Mar 2015 05:19:00 +0000

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:

Professor David S Celermajer AO FAA (Cardiologist at RPAH; Head of Cardiology at University of Sydney; and Clinical Director of the Heart Research Institute)
Associate Professor Edwin Kirk (Clinical Geneticist)
Dr David Tanous (Cardiologist at Westmead Hospital)
Dr Rachael Cordina (Staff Specialist in Cardiology at RPAH)
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:

ACHD is a relatively new and rapidly growing area of need.
The recommended (adequate) standards of care.
Whole life planning (holistic care).
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:

Cardiologist
Obstetrician
Anesthetist
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:

ACHD is a growing area increasing in size and complexity. Holistic care is required from cradle to the grave, encompassing all areas of life.
If you're suffering from CHD, ensure to be seen at least once by an established ACHD centre listed here.
Prevention is better than cure in context of pregnancy and ACHD. Pre-plan and enlist a team approach to managing your pregnancy.
Some exercise is better than no exercise.
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.
Best to be well informed about your personal condition and state of health.
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.

Fight or Flight

noreply@blogger.com (Unknown) — Thu, 29 Jan 2015 10:45:00 +0000

Following a major life event, there are good and bad things about life moving on as per normal. Normality can offer a good distraction; a reason to keep going; or a good escape from the seriousness of recent events. Alternatively, it can be such a good distraction, that you never get a chance to deal with your emotions to then be able to move on and live a new kind of normal. It's so easy to get caught up in existing and functioning, that we don't permit ourselves the mental or physical space needed to deal with our emotions.

Another factor that can impact this, is time. Often it's a necessity to simply keep functioning because anything more than that is not possible, so with time, other things come out in the wash.

I was so caught up in functioning and dealing with one issue at a time, that it took me a good eight months post cardiac arrest, to realise that since the cardiac arrest I've been having nightmares every night.

I couldn't tell you specifics about the nightmares because they have always been so muddled, but the constants have been the vivid emotions I've been experiencing in them. It's always the same: violence, fearfulness, loss of control, confrontation, anger, anxiety, hatred, cruelty, hopelessness, desperation, chaos, being judged, frightfulness, frustration...amongst others. In my nightmares, I'm always pushed into situations I don't want to be in or deal with, with no choice but to haphazardly confront them.

Image courtesy of Think Inc.

To say that I've been exhausted after the cardiac arrest, is an understatement. I was constantly so tired and looking for reasons for this exhaustion, that I completely missed the obvious one: good quality sleep. It wasn't that I wasn't sleeping enough; or didn't have the ability to fall asleep. We even bought a new mattress! It was that I was having nightmares: an inescapable loop of the same, stagnant emotions in similar scenarios every single night. As a result I would wake up exhausted, in a haze and blur of confusion. I'd be cranky, impatient, unclear, unable to focus on any given task for too long, and would get worn out really easily and quickly.

So I focused on the tiredness as perhaps being caused by hypothyroidism. The (slight) hypothyroidism I've been experiencing most probably being a result of the heart medication amiodarone that I am on. There was no other logical explanation because the only thing my blood work showed were the TSH levels to indicate the hypothyroidism; and a spit test that I did showed low levels of progesterone. Essentially both tests showing that my hormones are fucked*. My cardiologist, GP and the head endocrinologist at RPAH were not concerned with my thyroid results and advised to simply keep a close eye on it.

So what next, what's the problem? No one could give me an answer. My cardiologist advised that perhaps the severe tiredness was due to sleep apnea, which is a common symptom for heart patients. So I went to my go-to guy for all things advice: my shrink. I figured he'd have a good colleague or know of a clinic he could refer me to do a sleep study. At this point I began observing my sleep looking for sleep apnea signs, but what I found instead were the constant nightmares. I told my psychiatrist about these and he was not surprised: they are a common symptom of PTSD. So we trialled a blood pressure medication which has been proven to assist PTSD patients with their nightmares. It switches off the fight or flight response experienced during sleep, giving you a chance to process and therefore wake up more refreshed and have better day-time function.

Hey presto, as expected, the medication worked overnight. The first nice dream I had in approximately eight months: and it was about my sisters. I was a little girl and they were all fussing over me and looking after me, loving me and nurturing me. The complete opposite scenario and set of emotions from my nightmares. It was exactly what I needed.

Following this I visited completely new places in my dreams. Not all my dreams were pleasant, but I no longer felt the need to escape them. In my dreams I could now control my emotions and I had choices. I could choose what I did and how I responded, and could even walk away from them or change them. This was a complete turnaround from being forced to continuously and haphazardly deal with unpleasant situations.

I took the pills for about a week and then stopped. I wanted to see what would happen when I came off them. It's been over a month now and I am happy to report that I am still visiting new places in my dreams, interacting with people and feeling more and more empowered in them. With the option of taking the medication again should I need it. I feel that even just that one week of quality sleep (minus the fight or flight hormones) was enough to kick my brain over into a new state of mind and function. I feel like a new person and enjoy each day at home with my daughter so much more now (as I'm sure she does also because I am no longer cranky). I have the ability to focus on tasks and feel much more energetic and capable of doing the things I like to do, including exercising regularly, socialising and preparing nutritious meals.

And the road to recovery continues...

What I've realised from it so far, is that the road is rocky with bumps, ditches, holes and smooth parts in between. Everyone has their own path and set of circumstances. But what I do urge all heart patients (particularly after a major cardiac event) is to not neglect their mental health and state of mind. Emotions play a major part in our healing process and capability with dealing with whatever gets thrown our way.

-----------------------------------------
*I've been doing some research on hormones and PTSD, so more on this stuff later, in another post.

Setting Boundaries

noreply@blogger.com (Unknown) — Wed, 31 Dec 2014 10:07:00 +0000

Fuck you very much 2014. Just when I thought this year was (finally) wrapping up nicely after a tumultuous, challenging and death defying crescendo, it throws two more curve balls that smack me right in the face.

It's true, my psychiatrist was right - my family do not do things by halves. When we're in, we're all in. We've had two terrible sets of news relating to my siblings. During a time when happiness is supposed to reign (Christmas and all that happy, fun shit), my two sisters have had to come to terms and deal with some terrible health related issues. It's been a downer to say the least.

When I was talking to one of my sisters and she ended up consoling me about her bad news - when I should have been the one consoling her, I got thinking. It reminded me of when I had the cardiac arrest and had to console family members in the hospital. All the meanwhile I wasn't quite sure what was going on myself. The shoe was on the other foot now.

My other sister handled her situation quite differently - not wanting to discuss anything, and with her boyfriend giving me the news.

The point I'm trying to get at - is bad news is bad news, no matter how it is communicated or received. There are so many confronting and uncomfortable emotions to deal with and that can make communication during these bad times more often than not, awkward. Everyone deals with things differently and there is no right or wrong way. It's whatever the individuals are comfortable with at the time.

Last year when my great niece died, her mother at times got very angry about the types of things that family and friends were saying in an attempt to console her. I get it, the world can be a fucked up place sometimes and when fucked up things happen like a healthy 9 month old dying suddenly, I'd be fucking angry too with probably anything anyone said or did. But she never said anything about it (except maybe indirectly rant on Facebook about it); she expected that everyone else should know what she wants to hear, in the way she wants to hear it.

The pieces fell together in my in-laws kitchen the other day. It was the last straw - I was so angry at people wanting to help by giving me unsolicited random advice. People wanting to help heal and fix poor broken (heart problem ridden) Angie.

When in reality it's just a way to attempt to fix themselves, so they project their shit on to me.

I realised at that moment that there's no point being angry. People are not mind readers. Their attempt to help or console all come from a good place of caring, concern and love. We are just as responsible for how we respond, as they are for what they say.

The problem in my situation has been the lack of response I have been giving these seemingly helpful people. It's because I didn't want to make them feel uncomfortable, so I'd nod through and listen to all their hair-brained, irrelevant, out of context quick fixes and suggestions for helping me with my heart problem - whatever that is - because they don't even quite know.

I'm responsible for setting my boundaries and maintaining them. So here goes, next time someone gives unsolicited advice or assistance, this will be my response: I'm fine, thank you for your concern and advice. At this stage I am happy and healthy and have my situation under control and under the watchful eye of relevant health care professionals.

Fuck you very much. Thanks 2014, you've had some highs and some really low lows. On to bigger and better things in 2015.

Wishing everyone a happy new year full of love, peace and most importantly, good health.

The Overwhelming Lightness of Honesty

noreply@blogger.com (Unknown) — Fri, 12 Dec 2014 23:43:00 +0000

...or the overwhelming lightness of living your values.

I've been shitty lately. I couldn't put my finger on it until I was in my psychiatrist's office last month. There were a couple of catalysts but the main one that stands out in my mind is the Mexican standoff I had with a stranger in a public shopping centre carpark, the day before I saw my shrink. That was the peak of it.

Firstly, I had gone against my better judgement (and experience) by going to that carpark in the first place. In this suburb I usually park in the (un-metered) back streets about a ten minute walk away. The benefit of this is threefold: light exercise, chance to clear my mind before my appointment and no time pressure for the free parking. In this instance I thought I might try the shopping centre carpark instead, in case I wanted to also do grocery shopping. As always in the carpark, there was mass confusion and people doing stupid and illegal things like driving in the wrong lane and blocking off traffic. Long story short: a lady and I were going for the same carpark. If another carpark hadn’t become available that moment so we could each have one, I’m not sure what would have happened.

For many of you there comes a point in your life where for whatever reason, you may just snap it. You’ve kept doing the same thing over and over again and suddenly you realise, it’s just not working…and it probably never did, but you did it regardless.

I reached this point in that shitty, dark and dank basement carpark. The perfect setting for what felt like a lifetime of frustration that finally peaked and exploded. I realised in that moment that I had been putting up with a constant conflict in my value system, which created that angst, frustration and inconvenience, just so I can be nice and liked by other people. Liked by whom and for what? A stranger for letting her have the carpark, so she can be appreciative and like me, when she doesn’t even know me and will never even speak to me? WTF?!

My Mexican standoff breakthrough is, I’m sure, more (psychologically) complicated than I’m letting on. But it is not necessary to get into the detail or to analyse it to be able to portray the same takeaway message.

When a major life event occurs, like the cardiac arrest in my case, it hopefully makes you look at things and your life differently. The cliché of life being too short really rings true. Furthermore I believe it’s important, if not mandatory, to hold on to that life is too short concept to be able to make positive change in your own life. From one moment to the next, life can be over. So why spend your precious seconds, minutes, hours, days, months or years of your life being unhappy?

image courtesy of Your Core Light

I find that when I’m in the flow and living in harmony with myself and the world around me is when I’m honest with and true to my values. And that means knowing yourself and having the courage to say no to other things that conflict with those values and your happiness.

On The Road

noreply@blogger.com (Unknown) — Sun, 02 Nov 2014 06:16:00 +0000

It's been 7 months since my cardiac arrest. In August and September I took some time out to go on a holiday with my husband and daughter. We had our time at the beach, caught up with some dear friends and visited family who live overseas. Although tiring because it was such a big and long trip, it was really good for the heart and soul, and much needed.

I expected the reunion with my family to be much more emotionally charged, after nearly dying and all, but surprisingly it was quite mellow. In retrospect, it was probably for the best, as I don't want to dwell on the past and on such a traumatic event. Plus, there was nothing significant that hadn't been said already.

My husband had to leave ahead of me and my daughter to return to work, so it meant that us girls traveled back on our own. I was nervous about this to say the least: four flights, two of which were long-haul. But whenever the nervous thoughts entered my mind I would avoid them, instead opting to deal with the matter when it was at hand. My psychiatrist once told me I have a choice about when to think about things (this was specifically about traumatic thoughts, but I find applies to everything in life). Over thinking builds things up in my mind to the point where they are overwhelming and the cause of a great deal of anxiety and stress. So I chose to plan (by including plenty of rest stops between flights, plus assistance where possible), and then stop thinking about it. I found this strategy worked really well for me. The trip back was enjoyable, relaxed and smooth with no hiccups.

All this, coupled with the physical distance from home, meant I had a really good break away from being "sick" and having to attend the endless procession of health appointments. When I met new people, they didn't know me as the chick who had a cardiac arrest, so it was a nice change. I felt I could reinvent myself. This made me realise that perhaps the worse culprit in seeing myself as the cardiac arrest patient, has been me.

A few weeks ago I got the green light from my cardiologist to drive again (cardiac arrest patients are not permitted to drive for a minimum of six months post a cardiac event). I've felt a big relief and a surge of new found freedom.

I've seen all these steps as significant building blocks in increasing my confidence. In that light, I feel I've reached a major milestone and look forward to the next stage in my life, whatever that will be.

Support Group at RNSH

noreply@blogger.com (Unknown) — Tue, 29 Jul 2014 14:59:00 +0000

A couple of weeks ago I attended a support group at Royal North Shore Hospital (RNSH). It was primarily aimed at an "older" audience, although there was another lady near my age, Kim, who also attended.

It became very clear that not only different age groups, but also people, have different concerns and at times approaches to life and living with an ICD. The best example of this was an older patient exclaiming that she used to do everything right and still had a cardiac arrest. So post arrest and having an ICD inserted, she no longer takes things too seriously and instead indulges in a nightcap or two...on most nights. I guess we all have different ways in dealing with things, and major events like a health scare can motivate us to live life quite differently to the way we did before.

Kim pointed out this difference and outlined that due to having two young kids to look after (plus heart health complications), her concern is prolonging her life as long as possible. So for her, there is no indulging in a nightcap or any alcohol in fact at all, ever.

Myself on the other hand, I like to employ the more balanced French/Italian/Greek way of living: having the odd small glass of wine with a meal. Good for the blood and circulation I say!

There were two speakers organised for the day:

The lady spoke about needing to understand everything that was (medically) happening and taking control over her own care.
The man spoke about having a complete life turnaround. He used to be a high-flying successful business owner who worked too many hours, didn't exercise and ate and drank really badly. Since his arrest he's sold his business, exercises 5 times a week and enjoys spending a lot more time with his family and friends.

It was interesting to see the differences between the two speakers. The floor was also opened up to the audience over a lead discussion, as well as a question and answer. Even thought quite a few experiences were revealed, it was reassuring to see the differences and also know that most people felt very similarly about having and living with an ICD. I think it's important to connect with others going through a similar experience so you don't feel as isolated or alone. Family and friends can be supportive but unless they've been through the same experience, they just don't get it.

As much as I need to understand what's logically going on with my heart and why what happened did happen, I'm afraid there aren't any certain answers for me. I've been working hard to let this go so I can go on with my life and live without fear. So I've taken the more high-level, focus on what I can control type of approach. Similarly to the gentleman speaker, what has changed drastically for me are my values and consequently the way I live my life. I've given myself no option but to prioritise regular exercise (3-5 times a week). I feel that's one major positive thing I can do not only towards my recovery, but more importantly for my long term health and vitality. Never before in my life have I had this clarity, motivation and dedication towards my exercise and well being. As the noise drops away, things seem a lot more simpler too and life more enjoyable.

I'm looking forward to attending the next ICD Support Group at RNSH later this year. It's supposed to be aimed at a younger target audience and have a large focus on exercise with an ICD. I bet I will have a lot to offer to the conversation!

Wake, Eat, Live, Sleep, Repeat.

noreply@blogger.com (Unknown) — Thu, 10 Jul 2014 12:23:00 +0000

I'm tired. As I'm writing this I'm sitting on a stool slumping over the bench and my iPad. I've been wanting to write for a while but haven't had the energy nor the time. My hubby went back to work a month ago and honestly...I'm still adjusting to doing everything on my own, including looking after our one year old daughter. He's a great help when he gets home from work, but I feel like stuff (chores, cleaning, organising) are never ending. I've been overwhelmed at times. I'm getting irritated. I go to bed and fall asleep immediately from exhaustion.

I understand that all parents are tired, but I sense that my tiredness is on another heart-related level. I think I've been neglecting the fact that my capacity is not the same as someone else's (with no health issues).

What's been compounding that is that after a recent reassessment, I've realised my personal values were in the wrong order. I have been putting family and friends first. Noble, sure, maybe? But the reality is that if I don't look after myself then I won't have much to offer my family or friends or anyone else for that matter. So I put health first. This has changed my life and given me purpose, consistency and routine. Not bad things during a (emotionally and physically) tumultuous time.

Wake up, brekkie, gym/or walk, grocery shopping, lunch, cook, eat, sleep. Add a dose of housework and lots of playing with Zoe in between all that stuff. Repeat.

Some days are a struggle to do any of that apart from eat and sleep. I try and listen to my body (it's hard, my mind is quite overpowering and pushes me to over commit and overextend myself) but some things, like keeping my daughter alive and happy, must be done.

I've had to slow way down. I feel like I'm at 50% capacity i.e. doing half the amount of stuff I did before and have had to make changes to my life accordingly. I've tried to be creative in my approach because I'm coming to terms with the fact that I can't be everything to everyone. That concept is so unrealistic and unattainable, causes constant unnecessary angst and stress...but that's another topic.

Here are some things that I've been doing.

Minimised social commitments. Particularly during the week. My motto is now low key and quality over quantity. Major life events make people realise things: if any of my "friends" didn't come see me post cardiac arrest either in the hospital or later at home, then I won't be going out of my way to see them...or probably ever talk to them again either. So that also minimises the amount of people "in rotation" in our social calendar.

Prioritising. I can't do everything. I can barely do half the stuff I did. Realistically some things slip, so I find it easier to let things slide once I've prioritised what's important and what's less important. And then not feeling guilty about the things that do slip!

Organised a house cleaner. They can be pricey here in Australia, so I've booked one in for once a fortnight only. I'll be paying her out of my personal budget. It means a few less lunches out but the way I've been living lately, that's not an issue as I'm primarily home bound by choice.

Online shopping. They deliver the groceries to my house and place them on my kitchen bench. Convenient and considering I'm still not allowed to drive, necessary. Any bits and bobs that I need (fresh fruit, veggies and meat) I pick up after the gym each day from my local grocer/butcher.

More online shopping. Yep, don't even want to go to a shopping center to shop for fashion or cosmetics or presents. I order that shit online and it gets delivered to my door.

Ask for help. I delegate tasks to Chris, particularly lifting heavy stuff like piles of washing. I also now take up my friends' offers to help wash the dishes when they come over for a meal. And my new cleaner? I've asked her for (paid) help because I can't keep up with the housework.

Image borrowed from www.nsf.gov.

Automate and mechanise. I'm truly embracing industrialisation by using machines like there's no tomorrow. Some days the dishwasher does two loads; I put most things in there now! Hanging washing? I don't think so. I'm pulling that stuff from the washing machine and putting it straight into the dryer. I'm cutting out steps where I can. Sure our electricity bill is slightly higher but it's worth my sanity and energy.

Batch food preparation. If I'm making something that can be frozen, I will make extra to freeze some portions. That way if I don't feel like cooking one day, I can defrost and have something quick and easy on hand.

Saying "NO". Hard for me to do when I've spent my life trying to make others and myself happy. But no choice. Used in the correct way, "NO" can be very powerful and liberating. It helps set limitations, boundaries and expectations.

Sleep. My average generally is eight hours a night. Some nights I've slept nine or 10 hours and still don't feel like it's enough. If I don't get enough sleep I can't function and find that my energy levels are greatly affected. Most nights it's hard to drop stuff and force myself to go to sleep, but this is where the prioritising comes in handy.

I'm getting there - to whatever my new normal is meant to be. I feel like I'm getting organised but my energy levels are still not where I want them to be. I'm still focusing on my rehabilitation and finding a new groove in my life. It will take time and I'm understanding now, that's OK.

Physical Afflictions

noreply@blogger.com (Unknown) — Sun, 22 Jun 2014 13:47:00 +0000

End of June marks three months since the cardiac arrest.

Apart from the mental which I've started to delve into, there is a series of physical afflictions I've been dealing with in relation to the arrest. I have only felt comfortable sharing these now and I do so with some hesitation, but feel that I need to in order to continue on the path of healing.

I saw my chiropractor Luke on Saturday and finally had a long overdue adjustment. Based on Luke's advice, I couldn't get my left side adjusted earlier than eight weeks after the ICD insertion, but didn't feel comfortable, mentally or physically ready to get any adjustments done until now. I've been feeling stiff and sore in different locations in my body, particularly after laying in bed and sitting around for three weeks after getting the ICD put in (which was approximately one week after the arrest). The cardiac rehabilitation program with the physiotherapist has helped, but new injuries/issues arose (e.g. hips out of whack, so kept getting a sore knee when training). I really needed an adjustment and now feel so much better for it! There were a lot of blockages, particularly (and not surprisingly!) on my left side and top half of my body.

The ICD was inserted in the left sub mammary pocket. It's usually inserted underneath the left collarbone and noticeably protrudes under the skin, but since I have a zipper scar running down the middle of my chest; and my left breast plate protrudes more than the right (both from my open heart surgery in 1988), I wanted to avoid bringing even more attention to my chest.

For the first six weeks after the ICD insertion, I wasn't allowed to lift my left arm above shoulder height. Even if I wanted to I couldn't, because there was a lot of soreness from the operation and felt the strange sensation of the ICD leads pulling with any sudden or lifting movement. They needed time to fuse with the tissue and this takes about six weeks.

Apart from the internal stuff, I have two external scars from the surgical incisions: one close to my left collarbone where the leads were inserted; and one underneath my left breast where the ICD was inserted. Also, I have a significant scar on the left side of my neck (looks like a massive pimple) where the IV was inserted while I was in intensive care.

The whole underneath of my left breast was severely bruised from the operation and because of this and the incision underneath it, I couldn't wear a bra for four weeks.

My chest was constantly sore from the CPR, which had caused me to have fractured ribs. These can take at least six weeks to heal. Every time I breathed in I would experience sharp pains. So I got used to a shallow, half breathing type of constant state to minimise the pain.

I couldn't sleep on my front (it's my preferred go-to-sleep position) or left side, so it was impossible to get comfortable and often to fall asleep.

I had bruising and track marks like a junkie, running up and down my arms from the IVs in hospital and daily blood tests I had for two weeks while I was admitted.

I had (and still have, but somewhat slightly calmer now) pimples on mainly my neck, but also my face, back and backside from the stress from the whole event. I feel like I'm going through puberty...again. It wasn't fun the first time and it's not fun a subsequent one.

Most importantly, from being bed-ridden for a month, apart from the stiffness, I became totally unfit and struggled to even go down the twelve stairs in our building to get to the ground level. Not to mention the constant tiredness and low energy levels.

On Friday I graduated from the Cardiac Rehabilitation/Heart Failure Program at St George Hospital. I got quite emotional and upon reflection, realised what a massive milestone it is for me, particularly taking all the physical afflictions listed above into consideration. It feels like a massive achievement because I've come so far from being a fragile post operative and cardiac arrest patient, to being well on my way to feeling strong, fit and energetic again.

The visit to Luke and a couple of things he said got me thinking a lot about all these physical afflictions and how I feel about the ICD. I was hugging Chris the other night and could feel it there between us. I feel it every night I lie in bed on my left side to go to sleep. It still feels so foreign and strange, a part that doesn't belong to me but yet is connected and vital. It's such a strange duality to experience and with time, one that I need to accept as being part of me.

I've come a long way but now realise that it's just the beginning. There's still a lot of work to do and these things can't be rushed, particularly the mental aspects. I'm just taking it one day and one milestone at a time; and practicing my deep breathing.

Making Time for Yourself

noreply@blogger.com (Unknown) — Sat, 31 May 2014 21:00:00 +0000

After letting the dust settle, I realised my big emotional turnaround began after our recent trip to Perth. It was a chance to get away; spend time with my dear longtime friend Jenny; stop thinking about all the heart stuff and be a family again. In those moments though, I mostly craved to connect with myself. Most prominently, I felt like I was doing a half-assed job of everything: being me, being a partner, being a mother, being a friend; being all the roles that make up the rich spectrum of my life.

I know that I can only be my best and offer my best, when I've connected with myself to begin with. Then I can have more to offer to everyone. The problem was that I felt I needed permission to do this. I felt guilty for being what I perceived to be selfish; for needing time on my own.

The longing to spend time on my own came to a boiling point. I realised I needed to take action when I began getting annoyed not only at myself, but at Chris and Zoe for just being themselves, for wanting me to be around and for engaging with me. I felt stretched really thin, that I had nothing to offer them. I started to resent them. It felt like I was steadily moving in a downwards spiral through a dark abyss with heavy weights on my shoulders, pushing me even further down.

I got really upset feeling this way towards the two most important people in my life; and knew that I had to do something about it. So I gave myself permission to be me, to give myself space to spend time on my own and do things I enjoy. I gave myself permission to have fun, relax, explore and find myself again.

I started with doing something small every day. Below is a list of the things I've done over the past couple of weeks that have contributed to making me feel whole again.

dinner and movie date with myself
hot stone massage (never had one before, so it also counted as a new experience)
take shoes off and walk on the beach, wet my feet in the ocean, sit on the sand and play with it
take a 2-3 hour afternoon nap
meet my girlfriend for a 1-1 (no kids, no partners) coffee and gossip
walk through grass barefoot
date night with Chris (dessert and a movie) to be a couple again
family Sunday drive along the coast, lunch and drink with dear friends
bake with love: birthday cake for Zoe and banana bread for the physiotherapists at my rehab program
nurtured, watered and caressed my potplants, played with the dirt
went for a walk through the city to see the VIVID Festival with my girlfriend
personal maintenance (waxing, shaving, exfoliating, moisturing, file and paint nails, new facial cleansing regime)
went out for walks around the neighborhood with just Zoe, so we can reconnect and for me to build my confidence up and look after her on my own again

Both my holistic therapist and my physiotherapist had advised me a while back to take time out to do simple things I enjoy....and now I know why: life goes on, so I may as well enjoy it! This is part of my healing process.

Healthy Body, Healthy Mind

noreply@blogger.com (Unknown) — Wed, 28 May 2014 13:08:00 +0000

St George Hospital have a Healthy Heart Program run by physiotherapists at the hospital's onsite gym. I'm currently half way through my fourth week of physical rehabilitation. The program runs for six weeks total.

On the day of my cardiac arrest, the ambulance officers had taken me straight to St George Hospital and I stayed there in ICU until being transferred a few days later to RPAH, where I would be monitored by my cardiologist and getting the defibrillator inserted. I only vaguely remember someone slipping me a pamphlet and explaining the program while I was getting packed into the ambulance to head to RPAH.

It was weeks later before I came across that same pamphlet, on top of my washing machine of all places. I knew then I had to follow up but didn't do anything about it. The truth is I didn't feel ready to even think about the program, let alone sign up for it. A few days after this, the coordinator rang me to see how I was going and give me more information. It was really kind of her, I really needed her to organise it all for me and she did, it was the gentlest ever nudge to get me on the road to recovery. I'm so glad she persisted.

I didn't know what to expect and it all seemed overwhelming. Some previous gym sessions have not proved very fruitful or enjoyable. Once I gave a personal trainer a try. She totally ignored my heart condition and any information I gave her about myself (so much for the survey!) and got me (trying) to do chin-ups on a bar. WTF? Anyone who knows me personally will know that that type of exercise is not for me. Needless to say I never went back to that personal trainer. So much for personal...

Anywho I digress. I went to the Healthy Heart Program with an open mind and with time, have found my heart has totally opened to it too. I love it. I don't want to miss a session. It's on twice a week. My session group is on Tuesdays and Fridays in the afternoon. It's an hour of me, the machines and my music. I get the opportunity to clear my head and in a comfortable, caring and encouraging environment, to heal. Although I'm the youngest person in the group, I feel right at home. Everyone is so lovely and there to do the same thing as me: heal, learn, escape, exercise, be healthy.

The gym session is essentially run as a circuit. The circuit includes bike, treadmill, leg presses, leg weights, stepper, and free weights, amongst other things. Prior to starting the exercise program, I had gone in for an assessment where we discussed my case and requirements. Therefore every exercise is then specific to each person in resistance, weight and freedom of movement. The exercises are usually limited to six minutes each or three repetitions of eight, 10 or 12. Or in the case of the stepper (which I progressed to this week from the ordinary steps) for me, three repetitions of 30 seconds each. We all have a personalised exercise plan, which has been created by one of the physiotherapists. After each exercise one of the nurses/physios will check our stats (BMP, oxygen levels, blood pressure) and record them, so we are constantly being monitored. The fitter that everyone gets as time progresses, the more the exercises are increased in intensity, offering a slow and gradual build up.

On Tuesdays after the gym session, they also offer an hour education session with a different topic every week including: physiotherapy and general recovery information, occupational therapy and nutrition.

The Healthy Heart Program has done wonders for my confidence. I feel more strong, energetic, alert, connected, focused and fit. I feel safe and have around me people who are going through a similar experience. I also have goals again such as continuing exercise to be fit, healthy and to strengthen my heart. Currently I've committed to two gym sessions and two (long) walks a week (due to our increasing sedentary lifestyles we should all ideally exercise seven days a week, even if it's for half an hour). I've increased awareness around my nutrition and am once again focusing on losing the left-over post-pregnancy weight (something playing on my mind constantly and reinforced by my cardiologist on my last check-up). Excess weight has been directly linked to heart disease and problems.

The group varies and includes people who have recently had a quadruple bypass, double bypass, stent insertion and mechanical valve transplant. I'm the only one in the class who had a cardiac arrest and defibrillator inserted. Coupled with my age, I'm a unique case and sense that the "oldies" are more interested in what got me there than other classmates. This means I have made a lot of new friends!

Interestingly enough a few of my classmates are quite fit and regularly exercised before their operation/procedure which got them doing this program. One of the many common feelings expressed is that of disappointment. The disappointment arising from "having done the right thing" and then still ending up having heart issues. I can relate to this intensely but the more that I focus on my exercise and continuing to look after myself, the more that this disappointment fades. The more I accept that I will still try hard to do the right thing and be the best I can be, and that sometimes, shit just happens. The more that I also start to release the fear associated with shit just happening.

Although the physical rehabilitation is doing wonders, I have also come to acknowledge that for me, it's not enough. I also need to nurture my mind and psyche. I started about a month ago with seeing my holistic therapist and with her help, started dealing with my emotions as they were coming up, as well as getting my acupuncture and herbs to assist in my recovery. These treatments alone are generally enough under normal circumstances, but going through such a traumatic experience with the cardiac arrest, I knew I needed more.

My cardiologist referred me to one of his colleagues who is a psychiatrist with a focus on helping people deal with post traumatic stress. My psychiatrist is a really lovely, personable man with a good sense of humour, who made me feel instantly comfortable. As my friend Kate said yesterday (totally out of context but still very applicable): "sometimes you have to kiss a lot of frogs". I've seen a psychiatrist many years ago who was a total fuddy-duddy and well, just plain scary. Same goes with cardiologists. Again, I'm lucky to now have a solid and suitable network of healthcare professionals. But I am highly aware this is not always the case for everyone. So I urge you, if you're not feeling right or getting adequate care from any of your healthcare providers, you will have to kiss a few frogs and try others, until one sticks.

Last week I had my first session with him and even though we only had the psychiatrist's hour (50 minutes) to start discussing my history, I already feel better because I feel empowered. Rather than continue to wallow in self pity and uncertainty, I've taken responsibility for my emotions and taken steps to get help where I need it.

The healthy mind and healthy body concept is like the chicken and the egg argument. Which comes first? I don't think it matters. The point is that you pick one and the rest follows, it's inevitable. The most important thing is that you make a decision and take action.

One Month Check

noreply@blogger.com (Unknown) — Sun, 18 May 2014 11:41:00 +0000

On Thursday I had a check-up with my cardiologist and the defibrillator clinic at RPAH, which is about a month after being discharged from hospital.

I got good news, really good news. There were no changes to my heart post the cardiac arrest and no incidents recorded on the defibrillator.

I've mentioned this news to a few close friends and my automatic declaration after sharing the news, is to let them know how relieved I am.

I was lying. I'm not relieved. I'm even more confused because "I'm (almost) back to normal" with nothing really wrong; with no solid reason as to why this incident happened; and still, with no certain answers. The reality is that I will never have any (certain) answers. It's the uncertainty that I have to come to terms and live with.

I'm scared that any moment I could have another cardiac arrest.

What if I'm walking and crossing the road with Zoe, when it happens?
What if I fall and hit my head?
What if....who knows?

In the waiting room at RPAH to see the defibrillator doctors, my husband got chatting to a gentleman who was also there for his check-up. He's in his early 60's and up to his third model of defibrillator. He's had 38 zaps.

I asked what happens when he gets zapped. He said he sees a white flash before his eyes then blacks out for some time, before coming to. He advised me if this happens, to sit down and remain seated in case there is an additional zap after several minutes. He told me that one time he was on the escalators at a shopping center when he got zapped and he collapsed. People walked past him without helping, without checking if he's OK. Until a bit later, when two tradies figured out what happened and called an ambulance. My heart broke when he told me the story. I was surprised I didn't cry when he was talking to me. He's really sick. He can no longer work, he can hardly do anything and he should have a constant carer, but he can't afford one. He could have died 38 times but the defibrillator saved him.

Chris asked me if I felt better speaking to him, if I was convinced the defibrillator works? Sure, technically yes, I felt a little more convinced that it does work. But I felt more sad that that man has had such a tough time, that he's so sick. That, in no way makes me feel better that in comparison, I'm not as sick. Everyone experiences their own level of suffering. I'm just sad that for whatever reason, there's so many people out there that are unwell.

Over six weeks after the cardiac arrest, I am still finding out slivers of new information about the event. The day of the arrest I was touch and go. A hospital counselor spoke to Chris when I was admitted into hospital in the ICU. My condition was uncertain. She advised him to ring our immediate family/friends to let them know what happened. They didn't know whether I would make it or not.

This piece of information came out when we were having lunch with some friends on Saturday. I was shocked to say the least. I knew the situation was severe, but I had somehow managed to downplay it in my mind so I could process it. I buried the severity deep down inside me so I wouldn't be terrified, but instead could function. And now, that terror is surfacing. I really don't want to have another cardiac arrest.

Chris' view has been interesting. He said I experienced the worse possible thing I could, and survived it. That may be the case but at this stage, it still doesn't mean that I'm not terrified it could happen again.

The Only Way is Up

noreply@blogger.com (Unknown) — Sat, 10 May 2014 09:27:00 +0000

Before the cardiac arrest we had booked three trips: two interstate and one abroad. We like to travel and having family and friends spread all over the world makes it more of a priority. One of the first things I did after coming out of hospital was start organising our upcoming trips.

At the time I had an overwhelming urge to go ahead and lock in the trip details as soon as possible. On the surface I thought the reason was to make the most out of getting a second chance in life. I didn't want to miss the opportunities to see our family and friends. Underneath all that was the overwhelming desire to resume life as normal. You see, I'm the trip organiser in our family, so the trip logistics and destination selections are my domain. So I took the reigns and went full pelt into organisational mode.

In my chat with Dr Jaime O (my holistic therapist) this week we discussed fear and not letting it be the motivating factor behind my actions. Instantly I felt guilty (there is that pesky guilt creeping in again) that fear was my motivation behind continuing with the trips. On one hand I had my existential crisis around mortality and on the other, a bunch of emotions that were only just starting to surface. Evidently, guilt was the initial and predominant emotion, with fear a close second.

I thought maybe I was afraid not having done some things I wanted to do in this life? Afraid that I would leave this existence having missed out on something: a moment, an experience, an interaction. That's what my mind was telling me, that they should be the things I should be afraid of.

I caught up with my dear friend Krystal for a coffee recently. She asked me if what happened made me think about my bucket list. I thought about that question for a moment, lingered over it whilst holding my cup of hot chocolate. "No, not really. I think I do a pretty good job of living my life exactly how I want to live it, and doing all the things I want to", was my response. Perhaps the only things I haven't done from my list are learning Italian or to play the guitar.

Considering I live my life how I want, then logically, I shouldn't be afraid of missing out on anything. I realise now what I was really afraid of, is losing myself. I realise that sometimes we have to lose ourselves before we can find ourselves again.

I've been feeling that I need to redefine who I am. That these events (the cardiac arrest and the insertion of a defibrillator) somehow made me into someone else, that they define me, that once again I'm that sick person I spent the first 25 years of my life believing I was. I've worked really hard to shed that limiting belief. Similarly to life and death, my life and my condition are two very separate entities. So the challenge is to integrate and manage them. I'm like everyone else, with the same hopes and desires, just a little bit special, so I have to ensure to look after myself accordingly.

I no longer think I need to redefine myself. I'm simply Angie 2.0. The same as before but new and improved with the addition of some technological advancements, an insurance policy if you will, in the form of my defibrillator.

I'm writing this 37,000 feet in the air, cruising above the clouds. We're on our way to Perth to visit my long-time friend Jenny and her family. In my state of fear weeks ago I was thinking about all the things that could go wrong. I'd be stuck in a plane for five hours. What if I have an arrest during the flight? What if the defibrillator doesn't work? What if I die on the plane (and all the horrific logistics around that)? What if my defibrillator sets off the security machines at the airport? What if these fears become so overwhelming that I don't want to fly?

Traveling is up there on my value system, along with family, friends and new experiences. These values are closely intertwined. Once I realised that my true fear is losing who I am, and that travel is a big part of me, giving into the fear and not traveling became impossible. Who I am is not negotiable. I refuse to give in to a shitty, intangible emotion like fear. What a waste of time!

For the first time in a long time I finally feel like myself again. I put my headphones on and listened to my music full blast. I starred out the window and looked beyond the clouds into the misty horizon. I dreamt of faraway places. Then I cried. I cried for the fear and guilt I needlessly have been feeling. I cried for the people in my life whom I love. I cried for all the people in our world that feel pain and suffering. I cried for the gratitude I feel for my life and existence. I cried for the moment. I cried for finding myself again. I cried for the surrender that I finally felt.

Pharell Williams puts it well: "Clap along if you feel like happiness is the truth. Clap along if you know what happiness is for you. Clap along if you feel like that's what you want to do". I'm happy to feel like myself again and live my life how I want to live it. Beyond that there's nothing much I can do, just go along for the ride.

In my mind, I'm clapping all the way to Perth.

The Burden of Guilt

noreply@blogger.com (Unknown) — Tue, 06 May 2014 14:27:00 +0000

We were at a family function on the weekend and I was asked about my health and events leading up to the cardiac arrest. In fact it felt more like I was being grilled. Spit roasted and turned in my own juices to over cook.

"We're you stressed?"
"Work must be really stressful."
"We're you working long hours, did you have a lot of work on?"
"It's not good being stressed."

Mother fucker I haven't worked for over a year. Instead I have been at home chillaxing, playing with my daughter, organising my social calendar and going on coffee dates with friends. During that time the most stress I've experienced is deciding what to cook for dinner that night; and if I never got around to it, what take-away food to order.

I'm sorry if my language is offensive; but that's the answer I should have given. They know nothing about my life but they are full of assumptions. I haven't seen these people since Christmas. Instead I was a lot more diplomatic even after the bombardment of guilt. I was subliminally processing the conversation, feeling uneasy but not quite sure why. Until later.

They were trying to find a reason. The uncertainty of life, and death, are too much to bear. Stress was their scapegoat. I can empathise, I've tried to clutch on to various reasons.

The reality is that not even my doctors are completely sure what the reason for the cardiac arrest was. They found fluid around my heart so the most likely explanation is I had a virus. The virus weakened my heart and attacked it, messed with the electrics.

There was nothing I could have done or changed, no influence I could have had over the matter of my cardiac arrest. All it's workings were invisible.

I saw my holistic therapist on Monday, she's back in session after her maternity leave (YAY!). We had a very good and long chat. We pried open the lid to a very deep can of worms, which I'm dealing with.

One of the prominent emotions I am feeling is guilt. In my view I did all the right things, yet my body still let me down; I ultimately let myself down. Was there something else I could have done? The guilt suddenly takes a turn and joins forces with severe disappointment.

Guilt is a heavy cross to bear.

Not only had I been feeling guilty myself (without realising mind you!), I now had "family" making me feel even fucking worse. Like there was something I should have done that I didn't. Like I haven't been managing my own health or haven't had awareness about it my whole life already. I'm not ready to deal with their shit and their emotions, and I shouldn't have to either. I'm struggling enough dealing with my own.

Fuck that. Now I'm just pissed off. For me, this comes before understanding and finally acceptance.

Heart Week 4-10 May 2014

noreply@blogger.com (Unknown) — Mon, 05 May 2014 21:00:00 +0000

We're right in the middle of Heart Week, which serves to raise awareness about heart disease. This year the Heart Foundation is urging everyone to learn the signs of a heart attack in order to avoid having one. Learn the warning signs here.

If you get the chance to host a morning tea in your home or workplace, take the opportunity to discuss these heart attack warning signs and further spread awareness.

Should you feel compelled to help further, the Heart Foundation and the Heart Research Institute will happily accept donations anytime of the year to progress vital heart research.

Do you suffer from heart disease or have a history of it in your family? Then it's worthwhile completing a "Heart Attack Action Plan". The Heart Foundation shows you how to do this and offers free downloadable collateral to help you complete it. It's worthwhile being prepared.

Happy Heart Week!

33 Minutes

noreply@blogger.com (Unknown) — Mon, 05 May 2014 15:04:00 +0000

After my cardiac arrest I was unconscious for 33 minutes before being revived.

In that time you could watch a TV show, with minutes to spare. You could cook a quick meal. You could have a lengthy phone conversation with a dear friend. You could go for a jog, bike ride or swim. Or you could save someone's life.

I just lay there on the floor, occasionally gasping for air and then stopping, lifeless, while my husband Chris performed CPR. He dialed "000" and had the phone operator on speaker. Although he had done a first aid course a few months back, the operator guided him and offered extra support. In the meantime, our 10-month old daughter played on her play mat with her toys quietly, thinking that mum and dad were playing next to her too.

The two ambulance officers arrived, Chris ran to open the door. They continued CPR. Chris described it as a never ending passage of time. For as quickly as everything was happening, everything was simultaneously moving in slow motion.

The CPR wasn't working. It took 2 x 200J shocks and one dose of adrenaline to revive me. Then I was taken to the closest hospital.

What followed was a night of sedation, memory tests, MRI scan, chest x-rays, medication and treatment for aspiration pneumonia. The icing on the cake was the insertion of a single lead, MRI compatible Automatic Internal Cardiac Defibrillator (AICD) in my left submammary pocket.

I was in hospital for nearly two weeks. Plus six weeks recovery and R&R after the insertion of the defibrillator, so I don't unwillingly pull the leads out. Put that in your pipe and smoke it.

That's the technical stuff over and done with. Now I'm at home about 3.5 weeks into that recovery period and dealing with a barrage of (sometimes random) emotions and thoughts.

The latest of which have been irrelevant, trivial details about the event. What do the ambulance officers look like? Where did they park the ambulance? Which of our neighbours in our apartment block were watching as I was carried out on a stretcher and into the ambulance? Was there a lot of traffic on the road? What route did they take to the hospital? What route would have I taken? Did Chris and Zoe ride in the ambulance with us?

Random and trivial and yet all so seemingly important in my mind. I'm not quite sure what picture I'm attempting to paint in my head. One of survival, or the adverse? If things had gone badly, what would the aftermath of my death look like?

So here we are, at the root issue: mortality.

Prior to the cardiac arrest I was terrified of death. When I came to, post the arrest, I felt somewhat comforted because I hadn't experienced any pain. I had simply slipped into an all encompassing velvety, thick, warm darkness. I figured should I be so lucky that I eventually meet my end in the same manner, I couldn't have it any better.

Even so, I now have a whole new set of questions presenting themselves. This is an area and a process I will be exploring in time to come. I did start though by watching this video on TED by Stephen Cave: The 4 stories we tell ourselves about death.

“Death, therefore, the most awful of evils, is nothing to us, seeing that, when we are, death is not come, and, when death is come, we are not.” - Epicurus

In other words:

"Death is not an event in life: we do not live to experience death. In this sense, life has no end." - Ludwig Wittgenstein

What resonated with me is the distinction and complete separation between life and death. For some reason I could never see this previously. Once we're dead, we're dead. We don't know the difference. We ourselves do not experience the loss of our lives and ourselves, it's the people left behind that have to deal with that.

For now I will continue exploring, processing and living my life, and as Mr Cave says in his presentation, ensure to make it a "good story".

Why?

noreply@blogger.com (Unknown) — Sat, 03 May 2014 15:08:00 +0000

I no longer ask myself "why me?" like I used to when I was younger. I'm not a victim, I'm just another ant in the anthill that stuff just randomly happens to. No matter how much we try to effect change, we ultimately do not have that much influence. We are not the ones in control, for the most part anyway. Control is an illusion, at the most we can try to influence, guide or steer some variables.

I don't know if I believe in fate or destiny. The idea that I'm not the one guiding my life - making everyday deliberate choices - does not resonate with me. I like the idea that I consciously make decisions and then live with the consequences. The tricky part are all the other variables we don't choose or can't control amongst all that. It all becomes so blurred: choices, fate, destiny, universal randomness.

I didn't choose to have a heart problem. And for the most part I'm healthy, I'm doing my part to combat it, or at least delay the degeneration. But I do have to live with the consequences.

I had my routine, my checkups, my team of healthcare professionals and everything was in order, or at least I thought it was. Until I had the cardiac arrest.

Now, in this moment, there is a lot of uncertainty and a massive question mark looming over my future. Perhaps there always was, I just never realised it. I guess it's the same question mark that hangs over everyone, but I've been made to pay immediate attention to it.

I'm thrust into a new reality. I'm not quite sure what my life is supposed to look like or be yet. All I know is that I can't go on this journey on my own. I can't waste this opportunity to share my story and hopefully help people along the way. This is part of my healing and redefinition process. Thank you for coming along on this journey.