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

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.

Making a Cardiac Comeback

How will you write your comeback story?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Support Group at RNSH

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:

1. The lady spoke about needing to understand everything that was (medically) happening and taking control over her own care.
2. 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!

Physical Afflictions

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.