Back In The Game!

A couple of weeks ago I was defeated by the 1000 Steps walk in the Dandenongs. It was two weeks and two days after the surgery to implant Zappy III, my new pacemaker, and I was pretty bummed out by having to admit defeat half way up. I was feeling kind of wonky, and I thought it best not to push  myself too hard and potentially screw things up for myself.

 

Yesterday afternoon, I decided it was high time I had another shot at it. After all, it had been a month and two days since going under the knife, and in that time I've done a couple of walks on the flat at a decent pace, plus a short walk down at Point Addis that involved quite a few steps going down and coming back up the cliffs to the beach. Plus shopping, which is basically an endurance event. Heh.

 

Credit where credit is due - my friend Brett put a bit of thought into whether or not those steps at Point Addis would be easier than my failed attempt at the 1000 Steps before suggesting it, and I survived. In actual fact, I barely struggled at all. I call that a win! (Let's ignore the fact that I barely struggled because I kept a pace akin to that of the proverbial tortoise the whole way up...)

 

This is the view of Point Addis from a disance, by the way. The cliffs we climbed are the ones towards the left of the picture, and are a little lower than the ones this picture is taken from. It's Brett's photo, not mine, taken another day. I was far too busy trying not to die to take any pictures, and I definitely didn't walk that far ;)

 

So anyway, I got to the 1000 Steps car park, and I got what could only be described as a rock star spot - five cars from the start of the walk. I imagine that had a little something to do with the fact that it was pouring with rain and only about ten degrees. This photo doesn't illustrate it well unless you realise that the entire windscreen is a slick of fast-moving water, and the little wobbles in the surface are huge, fat rain drops!

 

 

My brave friend Chay was the only other starter, and I sat in the car and waited for him. He eventually arrived and, unbeknownst to me, parked opposite me. I was so engrosesd in playing with my phone that I didn't see him pull in, and he was able to sneak up and scare the crap out of me by slamming his hands against the passenger window. That's right, Chay, scare the girl with the dodgy heart right before a hike! ;)

 

The walk went well. We didn't hurry up - I never do - but we kept a fairly steady pace and gossiped the entire way up and back down again. I guess that's a sign you're doing okay, and it also seems to help distract you from the pain a little. We stopped for a quick breather a few times, and I probably only noticed that I needed to because I was struggling to speak, and when we got to the top we went straight down instead of standing around, resting. Well, right after I took this all-important Proof Of Life selfie, anyhow!

 

I didn't make use of any of the seats on the trail, and, now that I think of it, I didn't even notice them. I guess I just wasn't looking for them because I didn't need them. Plus, the fronts of my legs were already wet. I didn't need to add a wet bum to that ;)

 

I have to say I'm pretty proud of myself, in case you couldn't tell by that photo. I almost look a little bit crazed with the success of it all! The fact I showed up in the pouring rain isn't such a huge deal - my determination means that once I set my mind on something I will do it, regardless of the obstacles.

 

I also don't really count rain as an obstacle. I've done enough hiking, and spent enough of my time outdoors in Tassie in seriously crappy weather for work, for it not to be an issue. And more than one friend said it was too dangerous to attempt on a day like that, but again, my judgement on "dangerous" is skewed, having pranced about a boulder field in the fog on a frosty morning (and you do have to prance, because the boulders are often spaced quite far apart!), with a rucksack packed full of Elliot traps on my back, all in the name of science. I'm such an Evel Knievel ;) (although luckily I have only broken four bones so far in my life, not 433!). Plus, I wasn't planning on running up or down the steps, so really it was a pretty low risk.

 

It took me a little over an hour to do the loop. Two seconds over the hour, in fact *shakes fist* But at least now, like when I failed to finish last time, I have a tangible goal to aim for. I'm a bit sore today - when I woke up, my legs were aching. And the wound site is pretty stiff, too. But that will get better. And sore is good. Sore means you're alive and you can feel.

 

I'm back in the game!

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! :)

Frankenstein's Monster. Or, Vanity.

MWARNING: THIS POST CONTAINS AN IMAGE OF A PARTLY-HEALED SURGICAL INCISION WITH OBVIOUS INTERNAL SUTURE MARKS AND EXPOSED FLESH. DO NOT READ IF THIS IS LIKELY TO UPSET YOU!

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. 

Day Three. Waiting...

So I thought I should start to document my super-awesome hospital stay, as the days begin to melt into one another and I feel the need to find a way to mark time.

I'm counting today as Day Three, as it's the third day I've woken up in hospital. 

Day One - Wednesday - I saw my specialist (hereafter referred to as The Prof., on account of being a Professor and, so far as I can tell, The Grand Pooh-Bah of Electrophysiology in the country), who explained I needed to see another specialist - the Lead Removal Specialist. I saw the pacemaker technician, too, then The Prof. pulled a few strings and they kindly moved me out of the noisy hellhole of ICU after lunch and down to the cardio thoracic ward. 

My brother Saul visited (and met The Prof. and the technician), my dad visited, my friends Emma and Mark came with baby Arthur (who stole the hearts of nurses and patients alike) and with chocolate while Dad and Saul were still here, then everyone ate chocolate and then left. 

The second specialist finally showed up, ordered some tests for Day Two, and my friend Jamie showed up part way through that and I'm kinda glad he did because it's good to have people to bounce information and thoughts off. Especially because the specialist went through the risk statistics of the version of the procedure that will have a better medical outcome, which was quite confronting and gave me plenty to think about. I'm not going to tell you the stats until after the surgery, by the way. I won't do anything stupid but I also don't want people worrying unnecessarily!

Then Rachel, childhood friend of a uni friend who I haven't seen in years, popped by to say hi. It never ceases to amaze me the random people that check up on me when I get sick. Although I am essentially alone in this, I truly am surrounded by a big cloud of awesome people :)

So that was my first day. It was busy but in a good way - bear in mind that I'm not actually sick, I'm just here under observation whilst I await surgery because I am at risk of having a cardiac episode. Which means that the nurses got a bit nervous when I walked ten laps (750m) of the ward and my heart rate went up!

I had an alright sleep - much quieter than ICU. Day Two was supposed to be The Day of Tests and Answers. It started well - got straight into X-ray and then into the venogram lab...and then they spent an hour and a half actively searching for a good vein. Sterilize, tourniquet, ultrasound, needle, bleed, bruise, release, retreat. Rinse and repeat. I have four holes in my arm, and bruises to go with it. Fun times!

My Superintendent from work called to check up on me, and he sounded worried about the failed tests. I turned it back on him and told him to actually go to his own damned checkups. Men!

So back to the ward for more waiting. Note that I hadn't showered since Tuesday and was feeling stinky, so it was good of Dad, Saul and Em to not mention it when they visited ;) Mind you, little Arthur was objecting to something, and it may well have been that! 

Saul had shaved, too, presumably less for me and more in case the pacemaker technician was there again (she's lovely, and a total hottie, and next time I see her I'm going to ask what exercise she does because I'd really like to replicate what she's got going on there! Is it creepy to ask??). Nawww :)

After they left The Prof came by, expressed sympathy for my bruised arm (unusual for one as high up as he) and said I'd basically have to wait until that was done before we could make any decisions about surgery. Boo. 

My old boss texted, which was sweet. And my current manager called to make sure I wasn't too bored, which was lovely of her.

And then I had a shower, and it was better than sex. I wouldn't be surprised if I'd been moaning with the sheer enjoyment of it, either ;)

I had a good chat with my night nurse and slept alright...until about 2am, when alarms started going off, telling the nurse that my heart rate had dropped quite low to the kind of rate it sustained pre-Zappy II (despite the fact I'm being paced and that shouldn't happen). So I freaked out and wrote my Will, then emailed the appointed Executor at about 4am and told him where to find it, if it came down to that. 

As I wrote in the email to him, I know it was irrational of me to worry, even if Zappy had stopped working, because it was essentially no different to how I had spent the first 29 years of my life...only without highly trained medical staff around me, as I do right now. The fear does your head in, it really does.

Anyway, I eventually fell back asleep but now, on Day Three (they tell me it's Friday), it's more waiting, plus now I'm kinda tired. My tests haven't happened yet, and I'm trying to stay warm and super-hydrated to make finding veins easier...but of course that means I have to pee every two seconds!!!

The technician came back and apparently there is nothing (else) wrong with Zappy, probably just the telemetry, so all that late-night worry was for nothing. Still, it's good that I have a current Will now!

Other highlights of my day have been decent cake, watching a highschool softball match from my window, checking out hot tradies in the car park, witnessing a rather random sausage sizzle in the same car park, and rocking out to The Foo Fighters. I probably look odd all wired up, in my little short PJs, headphones in, drumming on my bare thighs! But hey, I look odd at the best of times so there's nothing new to see here ;)

Well I guess lunch will be here shortly, and who knows who or what the afternoon will bring (besides, yaknow, being stabbed in the arm again). Although I did hear a whisper that I'm being moved to a smaller, private(ish) room...

Sorry it's not scintillating reading, but my world is obviously a bit restricted right now. Feel free to come visit if you're in Melbourne!

Happy Friday, y'all. Enjoy your weekend and your freedom and your health :)

PS - being in here makes you think about what you want, and I've decided that I want to learn drums, thanks to the Foo Fighters. Gets me going every time. I wonder if they'll give me a private room all to myself and they'll hook me up with a drum kit or practice pads while I wait for surgery ;)

Pissed Off... Actually, Scared.

I'm pissed off.

 

I'd decided that I wasn't going to write about emotionally-draining, negative things here anymore. That this blog would be a happy space for cupcakes and pie and regaling you all with witty tales of grand overseas adventures, instead of using it as an instrument to help me navigate my way through the quagmire of health and relationship issues like I have done in the past.

 

Best-laid plans and all that.

 

So here I am again, boring you senseless with my pathos.

 

I'm pissed off because I'm using this forum as my outlet, and ruining all the happy cupcakes and puppies and unicorns with rainbows shining out of their arses. I like unicorns. Magical horses that can toast marshmallows. Awesome.

 

I'm pissed off that I need an outlet to vent this stuff at all.

 

I'm pissed off that I'm only 31 years old, and I have to think about things like when I might die or what my quality of life might be like in the future, despite the fact that there is nobody in my life that depends on me or who would lose half their heart if I wasn't around anymore (That's a fancy way of saying "if I died", by the way.), or whose life would be seriously affected if I were less able-bodied.

 

I'm pissed off that I'm going under the knife again so soon. It was supposed to be another five years yet.

 

I'm pissed off because last time I went under the knife, and my former fiance chose not to be there (huh, well apparently that still bugs me!), I was so sure that the next time I would have someone by my side. True, I had assumed it would be him, but... stuff and things happened. And I mean, my family and friends were wonderful last time, but it's not the same. Not even close. You couply people have no idea how good you have it. Don't ever take having someone you can rely on, and who relies on you in return, for granted.

 

I'm pissed off that I was finally - FINALLY - getting back on my feet again, and was really enjoying life. I'd been dating like crazy, and although I'm still single, dating has introduced me to some wonderful people.

 

One guy single-handedly undid most of the damage my ex did to me and helped me believe in my own value and trust men again, just through talking about it (mostly after we stopped dating, by the way - I'm not a total psycho!), so I was actually enjoying dating rather than treating them as job interviews or risk assessments.

 

A second guy showed me that I wasn't broken as I had feared, and made me realise that I should wait for that person who I click with and who puts a big, goofy grin on my face like he did, and not just settle for "kind of a nice guy" because I'm lonely. Unfortunately he wasn't in the right headspace for a relationship himself, which sucks because I really liked him. He was tall, intelligent and hot. The trifecta - almost as rare as unicorns farting rainbows whilst toasting marshamallows. And yeah, I know the headspace thing could very well just be a line... but it could also be the truth, and it doesn't really matter anyway because he gave me something very valuable - confidence in waiting for something better - and for that I am grateful. My point is, I now feel like I should draw back from dating, because it's not fair to drag strangers into this mess. No matter how tall or intelligent or hot they are.

 

On top of that, I had found the courage to hike and to run again - alone - after six long years of letting fear rule me, and was watching my fitness improve week by week. I was looking forward to seeing what my body can do. Heck, I ran 2km on the weekend and was on track to run 5km in a fun run, but I assume that's off the cards now.

 

So now... *sigh*

 

If you're new here, you probably don't know that I have a heart condition called Long QT Syndrome. It has caused me so little trouble in recent times that it has receded further and further into my consciousness, so that it barely affects my everyday life. I'm not going to rehash it because I've spent so much emotional energy on it in the past, and I don't want to let it get me down, but you can read about it here. If you have several hours, that is, because the posts about it are pretty waffly! Sorry about that. Read or don't read, I don't care, but be warned there are a couple of pictures of surgical incisions and also of X-rays of pacemakers. Grossssss. (Unless you dig that kind of thing!)

 

So today, I had an appointment with my electrophysiologist (or "EP", as they call them in the business), and they did some tests and discovered that one of my pacemaker leads has a crack in it. It's basically a miniature, plastic-coated, wound gal rope cable (but made of titanium rather than gal), so a few of the filaments have apparently suffered a stress fracture, but not all of them. This causes "static" and means that there's a chance of it tricking the device into believing there's a potentially fatal rhythm happening, and so it will deliver therapy. Which means it could defibrillate me unnecessarily.

 

So that's pretty crap.

 

So the EP said that I'd need to get the lead replaced, the sooner the better, probably in the next couple of days.

 

And that's pretty crap, too. I mean, it's great that the medical facility and technology are available, but it's crap that I need to use it.

 

The EP also said that they will need to speak to the "lead removal specialist" (because such a thing exists) about whether to remove the lead, or whether to leave it in there and junk up my heart with a second lead. Completely removing the lead can damage the heart, because the end of it has this little spring-like thing that embeds in the heart tissue to stop it from slipping, and that would come out with the lead, but because I'm so young they have to toss up the odds of damaging my heart tissue, or junking up my heart with multiple leads, bearing in mind that I will need several lead changes throughout my life unless the technology changes quite significantly, and soon.

 

So that's crap as well.

 

I'm waiting on a phone call to tell me when the surgery will be, and I'm trying to get some work done because I have an audit tomorrow, but my brain has turned to mush and I'm spending most of my energy trying not to freak out or burst into tears.

 

What I should really be doing is putting my energy into writing a new will. Depressing, but sensible.

 

I was kidding myself using the phrase "pissed off", though. Let's not lie, I'm scared. I'm really frigging scared.

 

I'm scared that a second lead will inhibit my heart function, and I won't be able to be as active as I am now, or ever find out what I'm capable of.

 

I'm scared that removing the first lead will damage my heart, ditto the issues mentioned in the previous sentence.

 

I'm scared of the scar being worse than before (although I guess that's only a problem if I get my kit off in front of someone, and ain't no signs of that on the horizon!).

 

I'm scared because last time I was on the operating table I tried to die, and in doing so racked up the 9th defibrillation and 11th resuscitation of my life.

 

I'm scared that something will happen during the surgery and I'll wake up a vegetable.

 

I'm scared of being alone during the whole process.

 

I'm scared of the pain (although the drugs are pretty good...).

 

I'm scared of becoming addicted to pain killers (it happens easily, and it's almost happened to me before).

 

I'm scared of how long this stuff takes me to get over psychologically.

 

I'm scared of being alone after it, forever, because it has literally just hit home that if I'm wigging out this badly over it, and I've had six years to become comfortable with the concept of death or a limited existence, then why on God's green earth would any man of sound mind choose to put himself in a situation where he may have to deal with a partner that could die young or not be able to be their best, awesome self, or maybe never even have the chance to see the best that they can be?? Far out, that's a big one for a stranger to swallow. Although I guess they'd never really know what they were missing...

 

I'm scared that I won't see Invincible Ness again. She's the one that has a shot at anything, by the way, and believes she can do anything if only she puts her mind to it. I lost her for a long, long time, and she's only been back in the last six months or so. I don't see myself as a cripple like I did when I was first diagnosed - the diagnosis was such a stark contrast from the life Invincible Ness lead - but I'm scared of having to go through that rebuilding process again. It's such a huge blow to your confidence, and it's exhausting fighting crushing fear every single day of your life.

 

I'm scared of not having a fair chance to live my life. That's not to be mistaken with being scared of death. I don't think I'm scared of death, but I am scared of missing out on all the living there is to do, all the places there are to see and the people there are to meet. I want to get married and have kids, just like everyone else, only now I'm questioning how fair that is on people I probably haven't even met yet.

 

I'm scared of not being able to do what I love, which is being outdoors, mostly hiking. Sure, what I've been doing is a pitiful excuse for hiking - it's not fear that gets me anymore, or my fitness, but the excrutiating muscle pain and rapid fatigue - but I do it anyway, and it has shown me that I have some very tolerant and patient friends. I hate seeing able-bodied people not using their bodies, just sitting on the couch watching TV. It makes me angry that they are wasting the blessings and opportunities they have been given, and I'm scared of losing courage and not being able to see the silver linings anymore and joining their slothful ranks.

 

So I'm going to wallow a little while longer, while I wait for the phone call that tells me when I will be sliced and diced and possibly further damaged. And I might (re-)write my will - seems wise. I might also clean my room up in case something happens to me - I wouldn't wish that job on anyone, and nobody wants their family to find their sex toys ;)

 

In the meantime, I feel like this:

 

 

 

But on the bright side, I like my meals all compartmentalised on a tray, so a trip to hospital won't be all bad. Yeah, I know, I'm a freak. But hey, if there's jelly in a little cup, I'm happy!

 

And it's better that they found out now, rather than when something bad happened.

 

Gotta be optimistic about something.

Good News! I'm Just Crazy!

After last week's little freak out, I visited the electrophysiologist yesterday to see whether I had in fact been experiencing shocks from Zappy MkII or not, due to the several times in the last few weeks I've woken up feeling like it has happened, or is about to happen.

The good news is, I haven't been trying to die, at least, not since I was on the table. Yay!

The bad news is, looks like I'm a nutcase. Not that we weren't already aware of that...

I'm not **completely** insane, though - there have been some arrhythmias, just nothing potentially fatal (I love how lightly they phrase that...), and apparently nothing that should be serious enough for me to be sitting bolt upright and calling out in distress in the night. did

They did a couple of tests on the device and also looked at the settings, and one of them didn't seem quite right but they knew there must be a reason for it. My usual doctor, you see, is away on sabatical so they decided the status quo set by the Grand Poo-Bah Electrophysiologist of the World (or at least, of Australia) should remain for the time being.

So, my best guess is that... (time for a story!) well, anyone who's ever slept in the same room as me may know that every so often I do weird shit in my sleep, especially when I'm over-tired, stressed out or uncomfortable. True story. Usually it's talking out loud about the sheep out in the paddock or the traffic management required for an asphalting job; or trying to make the bed while I'm still in it or putting clothes on if I'm not wearing any (sorry, overshare); once in a while I'll go for a wee stroll about the house; and, on special occasions, I put out fires or kill snakes from the comfort of my own bed, much to the bemusement of my bedfellow. I have a great old time of it and only wake up when something in my surroundings doesn't match  what I'm seeing in my dream (like a light switch not being in the right place, or a button not being where it's supposed to be), or frustrates me, or confuses me. So chances are I felt those arrhythmias in my sleep and then dreamt about the worst case scenario and reacted accordingly, and my reaction woke me up.

Suffice it to say I slept like a baby last night because I wasn't quite so paranoid. It's not to say that the fear has gone completely. It's always hanging over me, but sometimes, like recently, it just becomes bigger and uglier and gets the better of me. I probably need therapy...

Anyway, as promised, here is the post-surgery photo, from after the dressing came off. Since then it has formed a pinky-purple line down the incision, but nothing as bad as the old scar which was pretty bad. It's the line that runs right down the centre of the picture, not the shorter lines around it which are where my skin was wrinkled under the dressing, and which have now faded. Next time I have the tape off I'll take a photo (a note about the tape - last time they didn't tell me to tape the wound and this time they did, and the new scar is about 1mm across 6 weeks after surgery where the old one was about 6mm across. Much better result, so moral of the story - if you have a deep wound and care about scarring, keep it taped for a couple of months to take the pressure off the scar tissue. Brought to you by your favourite wannabe plastic surgeon ;).

Have a great weekend, people. I'm aiming for my next post to be about food, not about serious stuff. Mmm, speaking of which, I'm off to get an apricot upside-down cake!

Post-Surgery Update

Today - Wednesday, the day I wrote this, not the day I posted this - is 6 weeks since my pacemaker surgery. The recovery has gone pretty well, with the exception that if you asked me to swim freestyle I wouldn't be able to. The scar tissue seems to have tightened things up in my pec/front of shoulder, which isn't really surprising given that I girled out over the pain and held my arm to my side to protect it for more than a week after surgery. I know, silly Nessie. If I can't stretch it out myself within the next couple of weeks I'll head to the physio.

I'm supposed to have a follow-up appointment with an electrophysiologist in a couple of weeks' time, but over the last few weeks I've had a few things happen that I'm not entirely sure I dreamt, or if they actually happened, so I've scheduled an emergency appointment for this coming Friday (which is probably the day I will schedule the post for).

You see, three times each over the last couple of weeks, I have woken up absolutely certain I was about to have a turn (as in, enough to wake up and, two out of three times, sit up and call out); and I have also dreamt that I have received a shock vividly enough to have "felt" it and woken up (one time of the three I didn't wake up but I sure as hell remembered the dream!). Because I have been asleep at the time I have no idea whether it's just in my head; whether maybe my heart has played its old games, but just a little, just enough to prey on my mind and cause me to dream about it.

I hope it's just that.

I really hope it's just that.

But I'm not entirely convinced that it's all in my head, because this morning, when I "dreamt" about the shock, my ears were ringing a little when I woke up. Thing is, though, my ears ring just about all the time, and it gets louder and quieter of its own accord. See why I'm confused??

Things going in my favour, are that although  my ears have been ringing, my entire face hasn't been numb as it has been in the past. Mind you, in the past I haven't had a defibrillator to curtail the whole brain-losing-oxygen thing, so that could go either way. I haven't felt like I'm pushing through layers of black water when I wake, but again, that's a loss-of-consciousness thing and probably wouldn't happen if I had been defibrillated and not spent a great deal of time unconscious. My pulse rate has been... relatively steady after feeling like this, but then I **do** have a pacemaker now to beat that into submission. My head goes around and around and around this, in case you couldn't tell.

Things going against me are that I have felt funny in my waking hours. Nothing that lasted too long (I'm talking a matter of moments or seconds at the most), nothing like before, but still something. I guess Zappy MkII is ironing most of the hiccups out, but he has obviously not been 100% successful. Bless him for trying.

This sort of thing quite seriously screws with my universe. If it has happened, then a) well, it's just plain ol' not good, and b) I can't drive for six months afterwards. At least, I think that's how it works. It's how it has worked in the past, anyhow. On top of that, it also has the tendency to make me a blithering mess (at least on the inside - I tend to act tough on the outside but suspect it's pretty transparent!) and scared for about 90% of my day. As in, I think about it more than I think about food. And that's really saying something!!!

I'm scared. I'm really bloody scared. I hate being alone, especially at night, but the nature of my work means I don't have much choice in that. Well, I do. I could ask to be sent back to head office. But then that opens up the possibility of blacking out on public transport, collapsing onto train tracks and generally making a fuss in a public space, and knowing that I have Zappy looking out for me I would - believe it or not - prefer to be alone. I'm stronger when I'm alone, which is a bit of a paradox given that I hate being alone!!!

I am also beginning to be scared of dying, for the first time ever. It doesn't make any sense because there's nothing different now to last time. Actually, maybe it's just like it was before - that I'm not as much scared of dying as I am of not living - and there is SO MUCH MORE that I want to do now. I have this helpless sense of time passing, of not living life to the fullest, but I don't know what else I could be doing. I do need to rest every now and then, you know ;)

I also had this ridiculous thought this morning that if I were to die, there are probably things in my room I wouldn't want people to see. Letters to and from highschool friends about boys. Underwear with holes in them. Stupid sentimental things from years ago. A tube of Wartkill for that weird spot on the palm of my left hand (oh. Well now the interwebs knows about it. Never mind!). Stories I wrote that were the daydreamings of a teenage girl; poems and songs I wrote to express my angst over unrequited love. The list that goes on. Maybe it's time for a clean up!

I know I'll be okay, one way or another, but every now and then a girl needs a little breakdown! Thanks for listening, and spare a thought for me at around 1pm on Friday when they tell me whether I'm a total nut job or just of grave medical concern - all good mojo greatly appreciated :)

Thank you also to those two or three kind souls who have been keeping a particularly close eye on me since my little stunt at Christmas. It has come from - not unexpected quarters, because that's not fair to say, but just, well, not who I imagined would pay the most attention to how I was feeling. True, the majority of it has been via text message, but I have felt like someone is there and listening, and that means a lot. Not that I've ever actually really been alone, and have had most of my nearest and dearest around me or at the end of the phone at all times, but still. Thank you.

I'll let you know how I go, and will also post a picture of the new scar sooner or later - it's way better than my old one!

Upgrading Your Pacemaker; Sliced n Diced; or, The Adventures of Zappy the Second

As I mentioned recently, following my little ride in a helicopter and subsequent hospitalisation over New Years, I was brought under the care of a new electrophysiologist. He decided that, although his battery had not yet depleted, it was time to replace Zappy with a newer model that had an enhanced ability to pace my heart and therefore, hopefully, reduce the number of cardiac episodes. As luck would have it, I landed in the care of the doctor that my specialist in Adelaide had recommended (and who had also trained my Adelaide doctor, so I was off to a good start).

On Wednesday last week I was admitted to Melbourne Private Hospital. I opted to go in as a private patient because you have a little more control over when your surgery is, and plus I have private cover, so why not use it? I was out of pocket by $250 which I will only have to pay once this year, which I don't think is too bad for 5 nights plus surgery. I also did the maths and determined that in the last ten weeks, my health insurance has covered approximately ten years' worth of premiums in benefits, if not more. How's that for value for money!

Mum and Dad and Rex Wombat, Defender of the Infirm, came along for the ride.

There's a bit of a story to Rexie, but the people involved may be embarassed for it to be shared with all of the interwebs, so we'll just leave it as saying that Rexie was there to look after his girl.

"You lookin' at me?? I'll take ya!"

He sure looks tough... I wouldn't take him on...

Anyway, admission went swimmingly, besides a little freak-out when I met my nurse who was perfectly sweet but also quite green (she was about 2 weeks into her graduate rotation). I know I taught her a couple of things, which scared me at first, but after a couple of days I realised that she does listen, and takes things on board, and isn't afraid to ask questions. All of these are good things!

Once mum and dad left me at the lift, though, I started to get a teensy, tiny bit terrified. There may have been a wobbly lip and a crack in my otherwise calm facade that lasted about twenty seconds before I talked myself out of making an ass of myself.

I met the surgeon - this time around, because they were implanting the new Zappy more deeply than they had the old one, they called in the services of a cardiothoracic surgeon in addition to my normal doctor (another perk of being in a private hospital is the ability for your doctor to request assistance from whichever medical professionals he chooses). He was quite lovely and straightfoward and between him, my specialist and the anaesthetist, they had me settled down in no time at all. They even agreed to my somewhat whacky request to take photos of the operation!

I'm serious.

(Nobody is particularly surprised by that, are they...)

Unfortunately, I had a crack at dying on the table as they put me under, so they opted to restart my heart instead of taking photos, dangit. Oh well, fair call I guess! So I have no photos of the operation to share with you. Better luck next time.

I actually walked into the operating theatre and climbed onto the table myself. I suppose they eyed me up and decided they didn't much fancy lifting someone nearly 6'2" onto the table themselves! In memory it's sort of like a surreal dream sequence, and it will be interesting to see whether it ever pops up in my dreams/nightmares. I remember commenting on how narrow the operating table is (and yet, how long - I swear you could fit nearly 2 (short) people on it), and asking how on earth they got seriously overweight people to stay on the table - didn't they sort of, like, hang off the edges and overbalance?? They just laughed but I was serious!!! I'm not overweight anymore, but I didn't have much room to spare. I have the same question in regards to fitting people in to MRI chambers but I don't suppose anyone will ever answer that one for me, either :(

When I came to, things looked a bit like this (although it was more like the upper right hand corner of this picture):

The anaesthetist was basically a bright blue blob with no distinct edges who sounded a lot further away than just standing by my feet (although, to be fair, that is further away from my head than it is on most people...). I heard him say something about me going into VF (ventricular fibrillation, aka Dancing with Death), and I'm not sure whether he said it to me or to someone else in the room, but when I asked the Purple Recovery Nurse about it she denied it. Then again, my question probably sounded like "mmnmfgoiumdpolfg?" so it's entirely possible she had no idea what I was asking. My parents later told me that the surgeon had told them that what the anaesthetist had said was true.

Besides that whole nearly dying thing, which, let's face it, is a bit old hat for me, the operation went quite well.

Not too much later I was wheeled back to my room where Rex Wombat and my parents awaited me. The next thing I looked at was the television screen, and I was deeply struck by the irony of the brand of television considering I could barely see the label!

I didn't laugh on the outside, but inside it was hiLARious! It was so funny I kept repeating it to myself and thinking I had to tell the bloggy world about it (which I have now done... it was way funnier in my drugged-up head... sorry!)

After my vision had cleared and I had vomited up a whole lot of nothing (tasted like saline, not like spew, which I presume is what it was), my dad had to feed me my dinner, one tiny spoonfull at a time, because I was to groggy to do it myself, and I couldn't move my right arm anyway (it's still not really up to snuff). I made it through half a bowl of soup and a quarter of sandwich before calling it quits.

That first night I remembered how hard it is to get comfortable following surgery. This is the most invasive surgey I have had by a country mile. It not only involved removing the original device, but also replacing it - much deeper - with a new one. This meant teasing out layers of pectoral muscle to slide the sucker into place. It was my choice to have it implanted more deeply, mainly because I'm incredibly vain and because I don't want it to physically effect me in terms of carrying packs etc, but boy oh boy will I be rethinking the deep implant option next time. I guess I'll have more of an idea if it's worth the extra pain once I'm all healed up and fully functional again.

The first night is also the night where I came to realise that nurses in private hospitals are much more generous with time and resources than those in public ones - they'll stay for a chat, and pat you reassuringly on the back of the hand, and are more free (possibly as they have more time?) with helping you to the toilet and/or shower, and they'll fetch you sandwiches or icecream or cheese and biscuits (or painkillers and ice packs!) or whatever your defective heart desires in the night.

Thursday, I settled into my rhythm of eat-drugs-sleep-eat-drugs-sleep. Dad came and sat with me for a few hours and I don't remember much else about the day. I don't think I ate a great deal.

Friday I spewed up my lunch and only ate part of my dinner as I feared a repeat of lunchtime. There aren't many more painful things than vomiting with a swollen chest wound. You also wouldn't believe how intricately the muscles in your torso are connected with one another, or what colour lettuce is when it comes up again.

Nice :)

Thursday night (or was it Friday? Can't remember) was just awful. I have never been in pain like that, ever. And that includes the time I broke my right arm into an S-bend sort of shape. I think part of it was that I was more or less neglected for 2 or so hours as the shift changed over, so the ice pack I had asked for never showed up, and the pain killers hadn't shown up, and I was lonely and sore and so when I woke with a start from a wee snooze I was having and jerked the wound, it felt like the world was ending. Pain (and pain killers, for that matter) does funny things to your brain. I cried, partly from the pain and partly because I was scared it wouldn't stop.

I had plenty of visitors on Friday, including my brother. I was so stoked to see him cos I know how much he hates hospitals! I had visitors over the weekend, too, so my routine changed a little to sleep-eat-visitors-eat-drugs-sleep-visitors-eat-drugs-sleep. I didn't have a great deal of time to watch TV and I didn't read anything I brought with me - that's how much sleeping I did!

Shortly I will share with you my X-Rays and a couple of pictures of my wound, but before that I will share some pics of both the Royal Melbourne Hospital (where I stayed at Christmas) and Melbourne Private (which is next door) so you can see the difference.

The view from my first room at the RMH was pretty awesome. It was the best room in the ward because I was the sickest patient there, which meant that I got this view but with THREE LOTS OF FIREWORKS on New Year's Eve - one just this side of the city, one to the right over near the Bolte Bridge, and some way down between the buildings. It was very pretty.

But then they moved me to a submarine, occupied by a snorer, which I wasn't terribly happy about. I suppose that was their way of moving me along. Note also that this was the only window, and it was beside my bed, so I had to actually sit backwards on the foot of my bed to see out the window. But at least there was a tree!

Conversely, this was the view from my room at Melbourne Private. I would say it's an equally good view, or perhaps a little better on account of there being a sportsground down there, so at certain times of day I could hop out of bed and ogle watch the college boys training and playing soccer.

It had the added bonus of some local impromptu street art/sculpture thoughtfully added by - one assumes - school children, but given the aerial perspective it could also have been constructed by friends of a patient, or perhaps nurses (who are well known for having a filthy sense of humour):

Having trouble spotting it? Perhaps you need to look a bit harder *giggles*

Then of course there are the inevitable menu errors. The one at the RMH was all the more amusing because I'm not **really** supposed to drink coffee (the form requests tea. It also requests low fat, and I'm not sure whether I ought to be offended by that...)

but the one from MPH is definitely not fruit toast, which is what the form requests (not that you'd know it, cos my phone's camera won't focus on anything closer than about 3' from it).

Ahh, first world problems!

We're in the home straight now, and the next few photos may gross you out so if you're squeamish, best you look away.

First up, meet Zappy the Second. And also the ribs on the right hand side of my body.

He's about the size of a Zippo lighter, perhaps a little larger. I estimate that I could lie two of him, side by side, along my palm from its heel to the base of my fingers. I have quite small hands. And yep, that big bundle of wires and metal is inside me. The fatter wire that crosses down to the left of the picture is not - that's just the lead from the telemetry they had me on - but the two finer wires are still there. The model sounds very futuristic - the St Jude Medical Pacemaker 7000.

Second, this is what my surgical site looks like. I won't give you the close-up right away so you don't get too grossed out too soon. It's stuck together with Contact!

Thirdly, here is my whole chest X-Ray. You can see the two little leads that terminate in my heart (which is on the right side of the picture, and therefore the left side of my body). The lead that ends to the left is in my atrium and is the new one; the one to the right is in my ventricle and is the one that has been there since last time. I didn't realise how far the (or, my!) heart sits on its side until I saw this X-Ray and realised that, although your atria are above your ventricles in all the diagrams, in reality mine are kind of angular. I have no idea whether that's normal. Or whether I'm interpreting the X-Ray correctly. You know, with my non-existent medical science degree and all ;)

Okay, I just realised that it's not particularly obvious what I meant by the above, so at some point when my head is less foggy I'll play with the contrast on the picture and draw some lines to explain what I mean.

Fourth is a bit of perspective on the location of the incision. Once it's healed I'll find an old photo and do a before-and-after. As you may be able to imagine, it's kind of a big deal for a young woman to have such an ugly wound on her chest, which is why my incision is vertical - to make it easier to hide. As I said - vanity. The bulge will also be far less prevalent now as it is tucked under my pectoral muscle and not just under the skin (you could see pretty much the shape of the whole unit before, and could feel the lead terminals at the top. Gross, hey?).

And lastly is the gross one, taken 6 days after surgery, that reminds me of the plastic wrapper around corned beef, and all the goop that it contains. Plus some bruising. Plus some pink antiseptic stuff (which looks suspciously like the stuff they mark lamb with). Plus the more I look at it the more I wonder whether there are actually two incisions, side by side. I guess it would make sense, given that they had to take old Zappy out and put new Zappy in, in a slightly different spot. Oh well, I'll find out in a few days when I peel the dressing off. Not looking forward to it. I'm not geneally squeamish - opting instead for a certain level of fascination about the human body - but I suspect that if it does actually resemble that corned beef wrapper, that I will in fact gag a little. As long as it doesn't scar as badly this time I'll be happy. And the new surgeon explained what the old dropkick at the Austin didn't - that it scarred because my skin stretched, and the scar added fibres to itself to compensate. But if I keep it taped for 3-6 months, which the old surgeon never told me, I should get quite a fine scar out of it instead of something 5mm across like last time! Grr to incompetence, and may I never again encounter it...

So... I hope you weren't about to eat...

My experience at Melbourne Private was altogether a positive one, with staff who listened, and who I felt gave me a certain degree of control over the treatment of my pain and over my comfort in general, which is always good.

I'm not used to the different sensations in my chest just yet, but that will change soon, I guess. I still don't know what the new normal is. Hopefully my new normal involves the words AWESOME, and, as a good friend suggested, INVINCIBLE :)

Oh, but one awesome final note - the new model has this kickass function whereby it vibrates to warn you when it's running out of juice, or that it has detected that a lead is faulty, or that it needs attention in general. It feels like a mobile phone going off, only pressed really hard against your chest. How cool is that! (And yet, I'll probably positively sh!t myself if and when it ever goes off!).

Well that's it from me. In case you couldn't tell by my ramblings I'm well overdue for my afternoon nap, and even more overdue for painkillers. Sweet dreams to me, and thanks to everyone who called/dropped by/wished me well in general!

Good Thing I Like Jelly and Ice Cream

Because of my little adventure involving a helicopter over the new year, I was booked in to an appointment with a new specialist last Friday. He did a check on Zappy, and then confirmed what the nurses in the hospital had said - that he would want to upgrade Zappy for a better model.

To explain a little bit about my condition (Long QT Syndrome), I basically have an electrical fault that means that my heart doesn't beat correctly sometimes. Apparently the slower my heart rate, the longer the Q-T interval (you know how when you see a heart rate monitor on TV there's a big spike and then a little spike? Well the interval between the big and little spikes is called the Q-T interval (Q and T are the names of different components of the spikes)), the more likely it is that my heart will play up, which initially begins with atrial fibrillation (the atrium - the first bit that beats - spazzing out, which is an invconvenient but non-fatal condition), but in my case, can continue through to the ventricle and cause the ventricle to fibrillate (twitch/flutter, i.e. not pump blood properly) which can become a fatal arrhythmia if it doesn't correct itself. Yep, those 25 years I was untreated I was pretty bloody lucky not to be laid out on a slab!

Anyway, Zappy Mk1 has a single lead into the ventricle, to allow him to defibrillate my heart, should the ventricle "beat" at a rate in excess of about 210bpm. Your average person may think that a little risky, but considering the dose of beta-blockers I am on, I would be hard pressed to raise my heartrate that high through exercise, so it safe to assume that if my heart is beating that fast, that it's not beating at all - it's twitching.

Source - Yale Medical Group

The difference between this diagram and reality is that Zappy is on my right hand side, and the lead runs through my right subclavian vein, not my left. I had a clot in my left bicep at the time of implantation (due to inflammation from a canula), so they weren't keen to further obstruct blood flow on that side.

Oh, and there's another difference - my boobs are bigger. Slightly.

Zappy Mk2 will also have a lead in the atrium, so that he can pace the atrium whenever it drops below 70 or so beats per minute (which for me is all the time - my resting heartrate is rarely above about 50bpm, and my overnight heart rate has been known to drop to 28bpm, which, as anyone who knows how little I resemble an Olympic athlete would realise, is a little odd), and therefore hopefully prevent my Q-T interval from being so long, and therefore prevent the majority of the ectopic beats and therefore have a lower risk of a cardiac event. That means that, even though there will be a lead in the vetricle in case things get that bad, the chance of things getting bad enough for a zap to be delivered will be much lower.

So that's about it, really. The surgery is pencilled in for a fortnight from now. Suffice it to say I'm none to pleased at the prospect of being cut open. And, ever since I Googled Melbourne Private Hospital and saw a picture of someone on the operating table (actually, it was a picture of a bunch of surgeons and what I assume was a person under a whole lot of medical drapes...), I am totally freaked out. And I'm going to be a right proper nanna with a pacemaker now, and I hate the idea of a machine beating my heart for me. Hate it hate it hate it.

But I've been feeling really ordinary for the last couple of weeks, and feeling quite wonky for no reason, and being tired all the time, and being scared all the time, and continually reaching to feel my pulse when I don't feel quite right (because that's TOTALLY going to prevent me from ending up unconscious on the floor...), and panting when I walk a block on flat ground to the supermarket, and I hate that, too. Hate it hate it hate it.

So I guess, when I weigh that up with the surgery, and add the fact I will quite likely be fed jelly and icecream, I guess it makes it worthwhile. Jelly's good like that.

Responses to comments on "Mountains and Choppers and Doctors - Oh, My!"

For some reason that continues to allude me, Blogger is being a bitch and won't let me comment on my previous post on my hiking-trip-gone-wrong, which means that I have no way of acknowledging peoples' comments. So here's my way around it:

@Kirsti - I don't see why I should try to look less thrilled when I **am** thrilled ;) Well, obviously not thrilled to be in the situation where I **have** to be air lifted, but thrilled that, given the circumstances, I am not only surrounded by skilled medical professionals but I also get to ride in a plane/helicopter. Wheeeeeee!!!!!! :) Also, bike? Yes, please!

@Kat - Yeah, I'm not super-excited at the prospect of going under the knife and not coming out of it with a brand-new pair of b00bs! I'm also a bit concerned that Zappy the Second will do a lot more pacing and therefore be much more of a presence in my consciousness, but I guess I'll cross that bridge if/when I come to it. But at present, feeling cruddy like I am and worrying all the time, I'm kind of looking forward to it (albeit in a somewhat apprehensive manner).

@Katie - thanks for stopping by and for your good wishes. I dare say your loved ones would prefer for your new years to be full of champagne and lots of sparklers and not impromptu rides in helicopters :) Also, don't tell my mum but I actually don't mind being in hospital **that** much cos I kind of like getting my meals on a tray!!! I know, I'm a freak...

@Jenni - You're right, life is what you make it, no matter what is thrown at you, and I fully intend for mine to be a good one. Hopefully I don't get blacklisted for medical and travel insurance cos that'll make it harder!

Thanks for stopping by, everyone!

Mountains and Choppers and Doctors - Oh, My!

If you've been following along with my 101 Things, you'll know that #39 was to climb Mount Bogong. I had been planning to do it for some time, and had even been hitting the gym pretty hard in preparation for it, but as the time drew closer it became apparent that perhaps I shouldn't have been quite so ambitious.

So, upon the timely suggestion of my BFF Ness (yep, there's two of us! We're partners in crime from way back), we decided to go with a hike of approximately the same length, but one that I had done before with a Day One bail-out option as well as several evacuation options. We were always going to take a sat phone and an EPIRB as well as enough people (including men) to carry my stuff and/or my lifeless body, should the need arise.

Oh, and a quick rewind - for anyone who doesn't know me or hasn't been reading for a while, I suffer from a congenital heart condition called Long QT Syndrome. You can read about my quite exciting diagnosis here, including (but not limited to) a Medivac by the Peruvian Airforce. So this hike was kind of a big deal for me, because it was to be the first overnight hike since I was diagnosed with LQTS.

Because I live quite a large slice of my life fearing that I will have another cardiac episode, I also spend quite a lot of time assessing the risk of any physical activity I undertake. This includes things as big as a hike, to smaller things that most of you in good health would take for granted such as a short jog, to going to the gym/having sex/climbing a flight of stairs/walking up a tiny hill/helping carry a couch/climbing a ladder/lugging heavy - or especially awkward - luggage around an airport etc. when I'm at all tired or run-down.

The weird thing is, I don't fear death. That's quite odd, considering how much living I have yet to do - the things I want to achieve; the places I want to see; the people I want to meet; the skills I want to attain or develop. No, what I fear most is a) making a fuss or inconveniencing anyone; b) embarassing myself; c) scaring my loved ones; and d) not living. Note that "not living" and "dying" are two VERY different things. Dying is dying - it all ends. Kaput. Conversely, not living implies simply existing and nothing more, and I just can't stomach that thought. As frightened as I am pretty much every single day (or at least, the days where I feel my heart throw in a dodgy beat, which is most days), sitting on my mum's couch and not pushing my boundaries frightens me more. I refuse to be a shell of a person, and I refuse to let this diagnosis ruin my life. I'm a stubborn little so-and-so, so when I set my mind on something I tend to achieve it *resists the urge to complete that sentence with the words "or die trying"* And I am setting my mind on living.

Anyway, if the title didn't give it away, long story short, I went on a hike - something that I love - , had a cardiac episode, was airlifted to the Royal Melbourne Hospital and spent New Year's Eve in there (as well as 4 other nights. Awesome.). So settle back and I'll tell you the story!

Day One was what I would call a success. We started the walk after meeting the crew for a cut lunch in Harrietville and the driving up to Mount Hotham to park the cars.

From left to right, we have Hermann, Kaye, Ritz, Jamie, Ness and Myself. Note that, whilst I am in fact freakishly tall, and all bar Jamie are of average height (maybe less?), I also happen to be uphill of everyone else and quite a bit closer to the camera. This also accounts for the fact that my feet look enormous when, in fact, I have the equal smallest feet out of anyone in that photo. Ahh, perspective!

Hermann is Ritz's dad and Ness' father-in-law; Ness and Kaye are my partners in crime from highschool and I met Jamie in Peru (which makes it extra hilarious that he volunteered for this trip). There was a similar photo taken on this spot back in April 2002, but with our friend Al from highschool instead of Kaye and Jamie; that hike was probably the one that really kindled my love affair with the Great Outdoors, although a school hike up around the Snowy River three years previously probably nudged me in that direction. Still, nine years on and it's good to know that I haven't stopped loving to hike, even though there are more obstacles in my way now.

I would like to take this opportunity to quickly thank these people for accompanying me on this hike and helping me to achieve a pretty big dream - even if it wasn't the dream I originally set out to achieve (being Mount Bogong). I had intended to get all emo on their arses at the end of the hike and tell them how much it meant to me, only I was whisked away in a helicopter before the opportunity arose. So, guys, thank you. To the ends of the earth, thank you. I do appreciate what a big commitment it is to support a friend in an activity that may in fact kill them. I also understand what emotional strain you may have been under in doing so - I presume most of you worried, perhaps not every step of the way but certainly for some of them. I want you to know how much I appreciate that commitment, and hopefully it was still enjoyable for you.

Emo rant over.

Oh, and I'd also like to thank Ritz for bothering to carry a camera, and a DSLR at that! I was never going to carry one. I mean, come on, if you're debating carrying a second shirt, you're definitely not going to carry a large camera. So if anyone wants to nick any of the photos, they're not even mine, they're his, so best you email me so that I can get his permission.

The Razorback is a long ridgeline (8.5km from the road to the track junction that takes you to either Mount Feathertop or Federation Hut, with each of these being a total of about 10km from the road). Most guidebooks classify it as easy, and I guess it kind of is. I struggled a bit during the first half hour until I found my stride, and my brain stopped freaking out every three seconds. At times I was distracted by (vaguely) challenging terrain -

(the Big Dipper - the track down this is basically loose shale so it's a bit slippery and requires careful thought when placing one's feet, thus my retarded stance. I don't always walk with my arm out like that!)

- and by encountering windy, rocky outcrops and deciding to declare "I'M KING OF THE WORLD!"

(I nearly grabbed Kaye's boob when we posed for this photo, which would have been awkward... you know, unlike telling the entire blogosphere about it. PS - do you like my nailpolish? Fluorescent pink is so hiking-appropriate)

We got into camp at Federation Hut with enough time for a nice cup of tea (I'm the one in the blue jumper on the left and am every bit as surprised as you that I'm that flexible after a big day's walking!)

and dinner (and yes, that is posed - Ritz was taking candid photos of everyone and I decided to make it worth his while)

before we climbed to the summit of Mount Feathertop to view the breathtaking surrounds at sunset... through the fog... (and I will allow you to believe that I lead the entire way up the mountain, and will not include any photographic evidence to suggest the contrary!)

When we got to the top we walked a little past the summit before realising we were actually at the summit because - you guessed it - we couldn't see more than about 10-20m in front of us. This is the exact same view I got the last time I climbed Mount Feathertop. Which kind of makes me want to give it another crack on a nice day... guys? Any volunteers? No? Can't imagine why not...

Also, note the somewhat more realistically-proportioned photo. I'm a little bit of a giant, but I'm no uber-giant as the first photo suggested!

I didn't sleep well on Night One on account of it being so cold, and you know how when you're cold you need to pee, especially when you're in a tent? Well, it was worth it for the spectacular stars - Federation Hut basically sits in a saddle, and you could see what felt like (but probably wasn't) in excess of 180 degrees of bright, clear stars on the blackest black sky, not tainted by the light pollution of the city.

Day Two was all downhill, which is actually a lot harder than it sounds. There are pretty much no photos from that day, probably because it was quite mentally draining. Normally I'm good at downhills. My legs and my ticker held up quite well, but my feet... well, that's another story. I was in so much pain by the time we were about 2/3 the way down that I was taking painkillers and sobbing hysterically. And it wasn't the blisters that was the trouble. I can handle the sting of a blister being repeatedly rubbed and knocked - you just grit your teeth and keep going. No, this was the balls of my feet. My best guess is that, because I was using a walking pole, I had been throwing my weight forward on my feet as I relied more on the pole and my arm, and so bruised the soles of my feet. I have done this downhill before, and I remember it being difficult (it was post-bushfire, the track was unclear and it was mostly powdery-dry, knee-deep topsoil to slide through, which is fun at first but then becomes frightening as the terrain becomes steeper and random rocks rear their ugly heads out of the topsoil for added excitement), but not painful. No, this was painful, and I'm comparing that to a broken arm. Which I've had four of.

When finally Kaye and I arrived at the bottom - where, I might add, the rest of the party had been waiting for a couple of hours - I sat with my feet in the icy-cold creek for half an hour before trying to stand and go eat lunch. It was apparent my feet were pretty screwed when my legs almost collapsed from under me the second I put any weight on them. But they came good (they must have known there was food ahead! Alternate explanation: the nerve endings got used to bearing weight again) and I hobbled over for my lunch then hobbled back to the creek for a bit. It was decided that those who had been sitting around would take most of the weight out of my pack, and press on to camp.

As luck would have it, the advance party bumped into local gold miner Ken Harris (mining lease holder of Red Robin Mine) and organised a lift a little way up the valley for me. Ken stopped by the rest of us when I was just taking my feet out of the water for the second time, and it was agreed that Kaye and I would hobble on slowly, Jamie would power ahead, and Ken would pick us up on his way back in to the mine (he was leaving the park to meet his caretakers at the locked gate - there is a road up the valley but it is essentially a private road, to be used by Ken, Parks Vic and TXU maintenance crews). Kaye and I made quite good progress (me, now wearing the highly fashionable combination of socks and sandals, with very little in my pack), and Ken eventually picked us up and drove us up the hardest part of the walk, including some very nifty chainsaw work. I'd be lying if I said I didn't chuckle when I realised the advance party would have had quite a scramble to get over one particular log - I know, I'm going to hell...

I had actually met Ken before, back when I did my Honours work on weed invasion at high country huts, and he remembered me for a particular turn of phrase I had used on that day back in early 2005. He's quite a character, loves a chat (unsurprising, given he lives alone in a national park) and, judging by a couple of stories he told me last time we met, he loves the ladies even more. I suspect he rather enjoyed escorting two fair maidens in distress! If you're ever in the Alpine National Park in the vicinity of the Red Robin Battery, I suggest knocking on Ken's door and saying hello - he's got some interesting stories and he's a nice bloke.

Anyway, there's not much else to say about Day Two, except that Kaye and I hobbled into camp, I soaked my feet some more, we pitched the tent, made dinner

marvelled at how quickly the temperature plummeted as the sun left the valley, and went to bed for an excellent night's sleep.

Again, it was a freezing cold night, but I scheduled my trip to the loo for quite early in the night, marvelled at the stars that were even more spectacular and went to bed.

And that's about where my fun ended.

At around 5am on the last day of the hike, I woke up quite suddenly, feeling a bit "funny". I woke up my tent buddy Kaye and a few seconds later I received a shock from Zappy, my implantable defibrillator. I was totally conscious when that happened, which was awesome, so of course I yelled out "OW!!!" and woke up the whole camp site.

Note: When Zappy delivers a shock, it is because my heart has gone into Ventricular Tachycardia and my heart rate hits around the 200 mark. It is assumed that if I go into VT, that Ventricular Fibrillation (VF) may follow close behind, and that can cause death if it doesn't correct itself (which means that the 25 years I went untreated, I was pretty lucky not to die). Also, because of the beta blockers I am on, my heart rate rarely rises above 120-130bpm so it's not like I'll get a zap if I go for a run.

Ness took charge as Crisis Manager and we thought about our options - chill out for a bit and then walk out slowly; call Ken (cos, you know, I had his phone number now!) and get him to drive as far as he could and pick me up (but that would have required quite a bit of walking); or contact the emergency services.

Luckily I had brought my work sat phone (yay! It finally got used!) so Ness was able to actually speak to the 000 operator, rather than having to either run up the mountain to get mobile phone coverage, or set off an EPIRB without knowing if or when anyone would come to get me, and in what form the rescue would occur.

After a while I decided to crawl out of bed, mainly because I really had to pee and had no intention of having a full bladder when I got into a chopper, destined for an ER where I **knew** I wouldn't be allowed out of bed!

So here I am, braving the cold in the pre-dawn. I think the look on my face is a combination of fear, disappointment and resignation - kind of an "oh, well". Boo. It could also be that I was unimpressed that there is now a photo of me wearing socks and sandals...

An hour and a bit later, a chopper came to pick me up, much to the excitement of the other hikers camped in the area.

Unfortunately these photos don't really capture it, but the night had been so cold that everything was covered in ice, and as the chopper landed it blew up this beautiful rainbow of ice crystals.

Here I am, walking to the ambulance. I think the medic was pissed that he was pulled out of bed so early, but also glad that I was somewhat more alive than most of the people he picks up - these guys normally deal with road trauma. Not having to glue me back together or stop me from bleeding probably made a nice change of pace for him!

I probably should have made an effort to look sicker and a little less like I was enjoying myself, hey...

So they flew me off to the Royal Melbourne Hospital, where I had a couple more near-misses with the ol' ticker shortly after they had decided I could probably go home that afternoon (they then kept me in for five nights!). Meanwhile, see that valley down there? Well that's the valley I DIDN'T have to climb out of. Heh heh heh. Although, in all seriousness, I've done it twice before and it didn't kill me, but I do concede that this time I may not have been quite so lucky!

So I spent New Year's Eve with a pretty spectacular view of the fireworks in the city, and I got a pretty awesome chopper ride, so it wasn't all bad. Plus I'm a freak who likes to choose food using a tick-box and will eat anything, as long as it comes on a tray, so hospital and I get along quite amicably.

But I can't drive for six months, and I'm on one-and-a-half times the medication I was on before, plus electrolyte supplements, and there's a fair-to-better-than-average chance that I'm in line for surgery in February-March - the cardiology team was talking about implanting a new type of pacemaker/defibrillator that would hopefully mean that VT never happens and the new Zappy never has to get as far as shocking me... but we shall see.

So that's it in a nutshell. My confidence is shot to pieces, I'm scared of life again (although not quite so badly shaken as when I was first diagnosed, particularly as I climbed Mount Feathertop with zero trouble, and it all went wrong when I was minding my own business, sound asleep, not doing anything strenuous, not even having a racy dream!) and my family and friends are scared to let me do anything or go anywhere. But what the hell else am I supposed to do? As much as I want to curl up into a ball and cry, well I've only done that once and it was when this f**ktard of a nurse declared that he couldn't turn the low heart rate alarm off and that it would in fact beep every time my heart dropped below 46, thus jerking me awake, which is particularly bad for my condition, and an especially big problem when you consider my heartrate was sitting on about 39-42 overnight (and once made it down to 29... Olympic athletes, eat your hearts out!). Most of the nurses in the Coronary Care Unit at the Royal Melbourne Hospital were amazing, but he... well, I don't think he was really built to be a nurse.

So I'm trying to look after myself and take things a bit easier than before Christmas, but also trying to live a normal-ish life again. I intend to be back at work next week. I intend to walk places and do things on my own and buy a bike to make getting around a bit easier. But I'm so paranoid that every ectopic beat will turn into something horrible. It takes a long time to get those thoughts out of my head, but I know I'll get there.

Anyway, I've talked your ear off and the story wasn't quite as intersting as my Peru one (although both involved air evacuation, so I guess maybe I have a thing for pilots??), but it's better than if it had happened at home or, say, at a shopping centre. I do like a good story!

Meanwhile, I urge you to donate money to any charity that deals with arrhythmic heart condition research, such as SADS. They reckon that things like SIDS and quite a large proportion of unexplained drownings and seizures leading to "suffocation during sleep" may actually be due to electrical faults in the heart such as mine, because they don't show up in an autopsy. Hopefully, one day, some electrophysiology geek will cure my condition and I won't have to come up with a contingency plan for every frigging thing I do, and when that day comes quite a weight will have been lifted.