Saturday, April 19, 2014

Admitting Defeat... But Not Defeated!

On Friday I tried for a slice of my normal life - doing the 1000 Steps walk in the Dandenongs. If you're not from Melbourne (or you are, and your idea of outdoor exercise is getting up to grab another beer out of the esky at a BBQ!), it's a walk in a national park in a cooler, wetter, higher-altitude part of the outskirts of Melbourne. It's nearly 1000 unevenly-spaced and -sized steps separated by occasional, short bursts of walking track up a narrow, treefern-lined gully with just enough room to pass someone. I believe it was once just a walk to a picnic ground and was built in the 1920s, perhaps by returned soldiers (I might have made that up), but has in more recent times been renamed as the Kokoda memorial track, to commemorate the lives lost on the Kokoda Trail during World War II. 

Anyway, until I landed in l'hôpital I'd been doing the track for fitness purposes every week this year (except one, when it was above 40 degrees and the Dandenong Ranges looked like they were at risk of going up in smoke!). I started out quite slowly, taking the opportunities to stop and read the Kokoda memorial plaques every 12.8 seconds whilst I caught my breath, but just before I ended up in hospital I was getting to the top with just one quick stop. I'd knocked about 15 minutes off my original time, and was feeling pretty pleased with myself. You can imagine what a let-down being trapped in a hospital was for me, and why I walked so many laps of the ward while I was there!

Well, I got back in the game on Friday...or should I say, tried to. Not to blow the punchline, but I didn't make it to the top. Sad face :(

I got a bit less than halfway up and decided I wasn't feeling great and that it would be wiser to turn around, rather than push myself and do some kind of damage to my heart or the new pacemaker leads. I don't even know if they are legitimate risks, but considering you only have one blood-pumper and have no desire to repeat the surgery any time soon, it's probably best not to roll the dice on that one at the ripe ol' age of 31. Although I guess you could probably buy a new heart on the black market or, like, lure a foreign student into your home, get them hammered, put them in an ice bath and then...I'm kidding! I'm kidding! I mean, everyone knows that foreign students are for selling into indentured servitude, and hobos are for harvesting organs ;) Plus, yaknow, to replace a heart requires more surgery, which, wahhhhh. 

Haha, anyway, I'm not sure how much of feeling weird was that my body is still recovering from surgery, or that my fitness has declined that badly over the last month, or that I have just totally forgotten what it feels like to push yourself and get your heart rate going, but like I said, I didn't feel great so I bowed out. Oddly, as I did so, I had a totally random thought hit me that maybe that's why the contestants on The Biggest Loser often quit or struggle mentally early on - they feel all these unfamiliar sensations when they exercise, and it's scary. I mean, it's not the same thing by any stretch of the imagination...but I guess I have a bit more empathy now. Well, empathy over the sensation and the fear, anyhow.

If you don't know me well, or at all, you may not realise how hard it was for me to turn around without achieving my goal. Yes, I'm normally slow. Yes, I have never been sporty or athletic. But I am one stubborn human being, stubborn to a fault, and when I decide to do something I rarely give up. Even if that means that other, less positive things then occur as a result. So this was a pretty landmark moment in the development of my emotional maturity!

I feel like I'm recovering a million times better from this surgery in terms of pain levels and mobility, but in terms of heart function I feel like I've taken a backwards step. I'm trying to cast my mind back six years to the first time I had a new lead put in my atrium (this time around I had two new leads and a new device implanted, one into my atrium and the other into my ventricle, but the previous surgery was just adding a lead to the ventricle), and figure out whether what I'm feeling is comparable. And I think that maybe it is.

I think.

I remember feeling breathless and weak. I remember it being a lot worse than this - weeks on end of walking no faster than about 2km/hr for fear of inciting those breathless feelings and irregular rhythms - but I'm not sure whether it actually was worse (possible, considering I was going through a period of abnormal cardiac activity - or a "storm of activity", as my EP at the time described it), or whether it was because I had just come through said storm, including being defibrillated several times, and it was all a bit new, so every time I felt a bit off-colour it was panic stations.

So I'm trying to consider that, and to be patient. Going in my favour is the fact that I haven't just come through one of those storms - I went into this surgery in apparent rude health, with ne'er an ectopic beat to be seen. I do remember one of the coronary care nurses at the Royal Adelaide Hospital telling me that new leads can cause a bit of irritation to the heart muscle until they settle in, and that can occasionally cause irregular heartbeats for a time. I also remember that, despite the fact that the part of the RAH I was in was remeniscent of the antiquity of the hospital in Cuzco (rural Peru!), the doctors and nurses at the RAH were exceptionally knowledgable, experienced and reassuring, and far, far better at their jobs on all counts than those at the Austin where my first ICD surgery took place, so I'm somewhat more inclined to take on board what that nurse told me. 

So I guess it's a waiting game. I've dipped my toe in the water, and I'm not feeling great but at least now I have something to build on. I have a tangible point at the steps to beat, and none of my friends had to kick my arse over me over-exerting myself! I also have experience under my belt, so I know that it actually gets better, rather than just vaguely hoping that it will. And that is a hell of a long way from the mindset of that distraught girl alone and at rock-bottom in the RAH, 800km from home, thinking "there's got to be more to life than this. It has to get better."

And I'm quite confident now that it does get better. Maybe that's why I was able to admit defeat on Friday - because I'm not defeated, and I know now that there's always another day. Defeated would be sitting on the couch, sulking. Also, I can't take credit for that philosophy - it came from a new friend, and hearing things like that from new friends sinks in a bit better because I know they're less biased. I'm sure that bugs the crap out of my old friends ;)

So I will be back, and soon. And believe me, you'll know about it when I am! But even if it takes me five more times to get to the top, well sure, I'll pout and whinge, but I won't let it get me down. Because admitting defeat in the short term beats the pants off being defeated in the long term. 

See you at the top! :)

Saturday, April 12, 2014

Frankenstein's Monster. Or, Vanity.


I can't believe that after everything I've been through over the past few weeks, that it has come down to a question of vanity. 

Ten days post-surgery, my friendly local GP removed the dressing and replaced it with steri-strips, as advised by the hospital, and I saw the new scar in all its angry, red glory. 

I was pretty upset when I saw it. To me, I looked like Frankenstein's monster, a cobbled-together hack job of random body parts. I am aware that as a young-ish and vain woman with a sound literary education, this is not a comparison that most people would draw...but here we are!

I'm probably this disappointed because the previous wound literally looked like it had been scratched on by a paperclip when the dressings came off, and this one is more reminiscent of a sausage on a BBQ, oozing its insides out of the holes  you've pricked with a fork. My expectations were high, and this has missed the mark by a long, long way.

It probably also doesn't help that I'm single, because to insecure ol' me, having this...thing on my chest, an area of the body that we as women are groomed to believe is our most powerful asset, just feels like yet another disadvantage. I know that's dumb, and I also know that if the scar was on my leg or my arm or my back, I probably wouldn't care. 

Also, I know that unless I actively show people, the only people likely to see it are unlikely to care, and the next lucky bastard that gets my shirt off will probably have put in a bit of groundwork to begin with, and is unlikely to be turned off at that point by an ugly scar in an unfortunate location after all that effort. And, as one friend helpfully suggested, I should think like a 15-year-old boy: scars are cool, and...boobs!

I've spent the last eighteen hours being a sad sack about it, and now I'm done with that. I'm going to focus on the good stuff.

I live in a country where this amazing level of medical care is available.

I live in an era where the technology to give me a healthier, safer life is available. 

I live in an era where I have the luxury of complaining about a scar that is less than 10cm long with very little functional impact, and where people listen to me whinging and say supportive, soothing, kind things. 

I found out I needed the surgery as a result of a routine check, not because something went horribly wrong and I ended up in the emergency department. 

I managed to land in the care of the leading specialist in the country. 

The operation went well, even though my deeply-implanted pacemaker/ICD was difficult to remove, and the leads needed lasers to burn off the scar tissue. 

I get to say "lasers". 

I didn't become the one-in-100 that needs their rib cage cracked open to stop the bleeding, or the one-in-800 who die because they can't stop the bleeding at all. And that's not considering the fact that I'm a high anaesthetic risk to begin with. 

My employer has been incredibly supportive, as have my workmates. 

My family and friends have been their usual, wonderful selves, and on top of that I've become closer to people I wasn't as close to, rekindled older friendships and made completely new friends with pretty amazing people. And I've seen more of all of these people in the last three weeks than I had for a long time before. Not a day passed without a visitor and a phone call, and the support has been overwhelming.

Today, I managed to get my shirt on, OVER my head, so my mobility is coming back.

I went for a walk in the rain yesterday, because I could... Although it did highlight to me that I have a lot of fitness to regain!

I was probably the fittest and in the healthiest mindset I've ever been when I was hospitalised, so, although this seems like a huge step backwards, really I'm probably at a pretty good level of fitness now.

My pants still fit (just!), despite having been locked indoors for three weeks. 

I've read heaps. 

I've become addicted to Game of Thrones, and my scar ain't got nothin' on Tyrion's.  

See, lots of positives!

Probably part of what got me is that seeing the new scar took me back to this image of myself, six years ago, alone and scared in a new city, thinking my life was over, not understanding what impact this heart condition would have on my existence, staring at a huge, purple scar and a flabby body in a fogged-up mirror,  crying my defective heart out. I was so unhappy, and so scared of what the future may hold. At that moment it felt like it held nothing. 

But a lot has changed since then. I've been to hell and back a few times, not just medically but also in my personal life, so I'm definitely stronger and can do and handle pretty much anything. I have more friends. I'm closer to my family. I'm the same weight as I was in that image I just mentioned, but more of me must be muscle because I'm not sad anymore when I look in the mirror like that scared girl was. Hah, or maybe I'm just older and wiser! I still don't know what the future holds, but none of us do, and I'm not scared of it anymore because I'm making an effort to live it and enjoy it every day. Even now, writing this, I made a conscious choice to move outside into the sunshine and the wind to write, rather than watching it pass me by outside the window. And when I think of it in terms of that horrible place I've come from, the scar seems pretty insignificant. 

I do realise that when I look at The Scar, it's 10cm from my face and occupies my entire field of vision. But when others look at it, it's in the context of a 6'1" body! So maybe my friends are right. Maybe it's not so bad after all.

So here it is. This is what upset me so much last night. Hope it doesn't gross you out too much, and that grown-up boys think that scars are cool, just like 15-year-old ones do!

Yeah. All this fuss, for that. Harden up, girl. Harden the f**k up. 

Tuesday, April 8, 2014

Day 19 - FREEDOM!!!

Yesterday I was released, after a fashion. Nineteen nights and twenty days spent in hospital, and they finally let me go. 

Of course, I didn't actually leave the hospital until almost five, and they left me hanging for about eight hours. The floor doctor and my surgeon had both been in before nine and had said I could go. The floor doctor eventually said to have someone come get me at ten. I organised for Kirsti's folks to come get me, and they were aiming for eleven. While they were on their way, someone changed their mind and decided I should also wait to see my normal electrophysiologist, who I knew would say "that looks good, come see me in a month."

So we waited. 

And we waited. 

And I slept. 

And I hassled nurses. 

And we waited some more. 

And I slept some more. 

Finally I got jack of waiting and rang my doctor's PA and asked if he was coming, on account of my friend having been waiting for five hours. She said he'd been in surgery all day but that she'd call and find out for me. 

Less than five minutes later the nurse came in meekly and said I could go. Coincidence? I think not!

Kirsti's mum had given up circling the block four and a half hours before, so we  called her dad to get us and he even did a Maccas run on the way home. Legend. 

And look! I wore pants yesterday for the first time in almost three weeks! And they still fit, despite all that sitting around on my arse I did in hospital!

So now I'm back at mum's and we're trying not to drive each other crazy. Something of an anticlimax, really. 

The sad part is that either I'm a lot less sick or she's a lot more frail than last time, but I don't think she's really looking after me anymore. I guess that's the price you pay for independence - nobody nurses you anymore. I know 31 is kind of old to have that realisation or to want babying, but man, getting older can really suck! I guess it's better to age and lose people babying you than never having the chance to age, though...