On The Road

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

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!

Wake, Eat, Live, Sleep, Repeat.

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

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

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

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

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.