Sunday, 5 June 2011

The Day It All Went Horribly Wrong

I probably have my maths a little wrong on this one, but today marks three years to the day that I arrived back in Australia after It All Went Horribly Wrong for me in South America. That's to the day, not to the date. Today is the equivalent Sunday. If that makes sense.

Let me just quickly insert some useful search terms that I remember using in the period that shortly followed my little (mis)adventure, in case there is someone else out there, Googling a story like mine, in the hope to find someone who understands:

Long QT Syndrome
Support
Lifestyle changes
Hiking
Exercise
Heart rate
Safe
Longevity
Pregnancy (no, I'm not pregnant, but it was a question I asked!)
Scar
ICD
Defibrillator
Medevac / Medivac
Peru
Covermore Insurance (<-- unsponsored plug)
Pre-existing condition
Epilepsy
What to expect
Electrophysiologist / EP

Righto. So. Back to my story. Note that I have continued my story beyond the initial (mis)adventure in Peru to include my (mis)treatment in Australia, right up until the point that I found myself more at ease with my condition. I have also punctuated the timeline with exerpts from diaries and emails to provide a bit of insight into my headspace, because three years on I'm a lot less scared than I was back then.

So here it is.
For the benefit of those who don't know me, or who were unaware of this level of detail about me, I was diagnosed with epilepsy at about the age of thirteen. Between the time I was incorrectly diagnosed and the time this all came about, I had suffered a handful of seizures over twelve or so years, including one particularly embarassing eposide in front of my friends Kaye, Danielle and Abby, and another episode on horseback (well, I was riding when it began but I jumped off the horse pretty fast when I felt wonky), which culminated in my friend Kristen having to resuscitate (I never spell that correctly) me. I had spent close to fifteen years on the wrong medication, close to fifteen years having tests done and visiting specialists irrelevant to my condition (as I type this I am sitting in the waiting room of my electrophysiologist - the RIGHT doctor! Yahoo!), and close to fifteen years effectively unprotected from a potentially fatal heart condition.

Come to think of it, it was 25 years that I was unprotected for, but there were no real symptoms before then. Except for the seizures. And except for the heart palpitations that I went to the doctor for, and they told me was normal without doing any tests. And except one time when I was about four years old, and my parents thought I was having a nightmare, but with the benefit of hindsight and the ability to compare what I felt like when I woke up then with what it feels like now when I come to and start breathing normally, it was undoubtedly a cardiac episode.

Anyway, you'll have to bear with me, because there are quite a few segues in ths tapestry of this story. The story goes a little bit like this:

I had been travelling in South America for about two months, half way through a four month trip, when the shit hit the fan. I had spent the first month slumming it on public transport and in backpackers' hostels (and certail accommodations that weren't hostels - but that's another story!) through Chile, Argentina, Uruguay and Brazil with my friend Amanda, and then went tag-team at Santiago airport en route to Peru and swapped Amanda for Kirsti. Kirsti and I had spent about three weeks travelling in a tour group (an AWESOME tour group, I might add - Hi, Aldo, Jamie, Matt, Andrew, Simon, Ollie, Luke, Cat, Astrid and Daina!!! (did I miss anyone? Besides the Watermelons, that is...)) through Peru when It All Went Horribly Wrong.

We had seen Colca Canyon, the Nazca Lines, the Sacred Valley and of course, Machu Picchu. We had even completed The Inca Trail, and although I had struggled a bit, I thought it was (and it probably really predominantly was) due to my general unfitness. But, as I had declared several times on the day that we climbed Dead Woman's Pass, it's one thing for us young things to flog our bodies with very little training, but it's a whole other kettle of fish for sixty-somethings in poor health to attempt it. Perhaps God - who I'm beginning to suspect has a finely tuned sense of irony - overheard me and decided to teach me a little lesson.

For those who weren't there (= most of you), The aforementioned Watermelons were that sixty-something couple. If I were to hazard a guess, I would say that she was actually in the process of dying of some sort of degenerative disease - she was shaking in both body and speech, and was not entirely congnisant, and was also very, very cranky to the point of rudeness - and had decided that doing The Inca Trail was the one last thing she wished to do before surrendering to her illnes. I would say that he was there to support his wife through it, which is admirable... except for the part where he wasn't fit enough to do it either and actually put his life in danger.

I like assumptions. Never let the truth get in the way of a good story :)

The porters and even the guides and tour leaders had to take turns in walking verrrry slowwwwwly with them, or in carrying them on stretchers and in doubling back to carry the packs of those who were carrying the Watermelons. It was completely unfair on them, and you could read the disgust and frustration on their faces like a book, as opposed to the mild amusement you would see when Kirsti and I would crawl, half dead (hah! How apt...), into camp at the end of the day.

The Watermelons never made it to Maccu Picchu - instead, we passed them sitting, dejected, by the side of the track as we belted up towards the Sun Gate at 04:30am. I don't know whether they had agreed to go to the hospital the night before or whether they had risen early to get a head start (that particular strategy had been attempted every morning of the trek, with them leaving two hours before us but with Kirsti and I, bringing up the rear, passing them just an hour into our day), but that's where they were headed. It would seem that she was just exhausted and dehydrated on top of whatever the hell else was wrong with her, but he was tested for those pre-heart attack cardiac enzymes and was full of them. In supporting his wife he had damned near killed himself, and put other lives at risk into the bargain. It's all very romantic, but it's pretty effing stupid at high altitude in a remote area in a developing nation!!! Nope, no air ambulance here. Plenty of donkeys to sling your corpse over, though. We picked them up from the hospital at the end of the day we visited Maccu Picchu and never saw them again - one can only assume that they were either put in another hospital in Lima, or transported home, or both.

So. Back to me. Cos this is all about me, you know!

When we got back to Cuzco we returned to our hotel rooms and sloughed four days' worth of dirt and sweat from our skin, then went out for dinner. I remember making the mistake of ordering something that wasn't pizza from the menu of a restaurant known for its pizza. Lasagne, to be exact, and it was cold in the middle, so I suspect that may be the culprit in giving me a tummy bug. Luke's beer was flat, so he made them get him another one, and that one was warm, because they'd literally run out and bought it and not chilled it, so we left without tipping (pig-headed Westerners, much??). Later, a bunch of us went out to a bar and then a few of us pressed on and went clubbing. I had a bit to drink but not **that** much (I was not only capable of movement and speech, but also conversing in Spanish... and yes, I really mean that - it wasn't one of those delusional "LOOK HOW FAST I CAN RUN GUYS!!!" situations you sometimes get yourself into when you've had a few too many, because the guy I was ordering our beer and snacks from on the way home understood what I was saying). We eventually headed home, but decided we wanted to stay up until 4am, thus completing the Maccu Picchu Challenge - that is, staying up the full 24 hours from the time you are require to rise n shine and make the trek to the sun gate. So we picked up some beer and some snacks and went back to one of the rooms in the hotel.

I remember crying drunkenly that night about what a terrible relationship I have (had, actually - past tense. She still gives me the sh!ts but we have reached... an understanding) with my mother, and how I wished we were closer. There went God with his acute sense of irony again, because if none of this had every happened I am fairly certain that mum and I would not be as close as we are today.

The following morning I decided to forgo breakfast and the morning's activities in favour of a sleep-in. I'm sure everyone is thinking "AHHH!!!! SHE WAS HUNG OVER!!!" but really, I was just totally exhausted. I'm not the hangover sort - after a night on the turps I just generally feel grotty and spend the following morning sweating alcohol from every pore in my body, rather than writhing about, moaning about a thumping headache and vomiting profusely out of my nose (<-- poetic licence) like my brother does (HI, SAUL!!! :) ) - but deprive me of sleep and I'm absolutely useless. Kirsti went out to a museum and I spent the morning alternating between being on the loo, retching (there was nothing left in my stomach by this stage) and shiverring violently but never warming up. I would hazard a guess and say that I had a high fever to go with my stomach bug. Again I repeat that this was clearly a stomach bug and not a hangover! I too, along with many others who have visited non-European countries, can share in Kirsti's experience of sitting on the toilet whilst vomiting into the shower. We're a classy pair of broads.

Before Kirsti went out I got her to ask Aldo, our tour guide, to send a doctor. I knew from previous experience that the most painless way to get through a bout of severe food poisoning is to get a hefty shot of antiemetic in the bum, load yourself up with antibiotics the size of horse tablets, drink litres and litres of water and the occasional Gastrolyte, and let it run its course. Taking Gastrostop is a total no-no because it actually traps the bug in your body when your body would really very much like to purge itself of it!

So, I slept and spewed and shivvered and shat all morning whilst waiting for the doctor. It got to the point where I wouldn't bother getting out of bed because I knew there was nothing at all left in my digestive tract, so I would just lie there in the foetal position, retching. The doctor showed up just as my heart was really starting to play up - it had been a little earlier, but nothing worse than the palpitations I had previously seen a doctor about. And then, conveniently, about two minutes after she showed up, I had a seizure and began to scare the crapola out of Kirsti.

Now at this point, I am going to make an all-inclusive statement that applies to pretty much every episode I had for the next 48 hours for which Kirsti was in attendance: I'm pretty sure that every time I came to, I apologised (because it's what I do). I would then laugh at her horror-stricken/tear-streaked/generally-freaked-out face and tell her that I was fine and to stop worrying.

I guess I wasn't so much on the fine. I should probably apologise for the laughing part... sorry, Kirsti!!!

So anyway, the doctor got a bit worried, called a taxi and brought me to the travel clinic. They thought the heart issues were being caused by electrolyte imbalance, both through dehydration from the hike and through the virus. So they pumped me full of electrolytes, and... nada. No change.

Definition of irony: room with heart equipment being on the second floor of a clinic with no elevator and having to use the stairs.

So they shipped me off to the emergency department at the Cuzco hospital. This hospital reminded me of a late 60's highschool science lab, both its colour scheme and the vintage of its equipment. But it was clean, and it functioned. Actually, the part that freaked me out the most at that point was having to get undressed in front of strangers and lie there naked under a sheet. Oh, Vanessa, Vanessa, if only you had known then exactly how much further your diginity would slip over the coming fortnight *shakes head sadly* Anyway, Kirsti told me that the emergency room had this canteen style thing that sold saline, drip kits, dressing and various drugs. Basically, unless you had the money to pay for those basic things, the doctor wouldn't see you. We really do have it good here.

From here I was transferred to the ICU, which, due to its tiles and its lighting, looked a hell of a lot like an operating theatre, particularly as I was left right in the middle of it for quite some time. I spent three nights there, and I don't know whether I was on some sort of sedative or whether my body was just worn out, but I spent a LOT of time sleeping. You know, in between being defibrillated, and being fed half a cup of soup three times a day. You'd think I was starving, but upon consultation of my travel diary (which I filled in when I was feeling a bit peppier in Lima), food didn't interest me all that much just then. The nurses were lovely, and were highly skilled in the art of sponge baths, and with my exceptionally crap Spanish we managed to have a bit of a chat.

I would like to go on the record as saying how appalling the nursing care is in Australia, and how lax the general hygeine in hospitals is here. An Australian nurse under the age of about 30 is an insipid and clueless breed, with no notion of true patient care and quite a serious attitude problem to boot. I'm sorry, but it's true. I have spent a lot of time in hospital, and only met two or three decent ones out of close to a hundred, and one of them was under 30. And she was Irish. Go spend some time overseas in a non-Western country, or doing aid work with no resources, and maybe then you'll understand what nursing is really about.

Anyway. Three interesting things happened in hospital in Cuzco.

One, a man who I took to be the Chief of Surgery or perhaps the director of the hospital (I am making this assumption based on the fact that he wore more bling, carried himself differently and had quite a few minions following him about), came for a visit. I assume this was because he was the only person in the hospital with a good grasp on English. In three days there, only one overworked doctor had been able to speak to me in English, and he tried his best but didn't get very far. So Important Doctor Dude came in to tell me that there was something wrong with my heart. Um, thankyou, Captain Obvious. He then told me that I would be transferred to Lima and that they may perform an ablation (= burn a nerve in your heart) there. Then he left.

(For the record, I have not had an ablation performed, either in South America or here in Australia. Apparently it is a procedure reserved only for those whose life is severely affected by Long QT Syndrome, and, as it turns out, I got off lightly... not that it feels like that, sometimes, but just knowing that makes me feel kind of lucky.)

Two, a Catholic priest came to see me. I realised that I must be in a bit of trouble when that happened, but it still didn't really sink in. I was still lying there, wondering whether they'd let me continue my holiday. The man didn't speak a word of English but somehow I managed to understand that he was asking what denomination I was. When I explained to him that I hadn't been Christened he turned a bit pale (for a Quechuan man!) and then asked whether I would like him to do that for me. Somewhat inappropriately, but pretty true to form, I laughed and said "Nah, I'll be right, mate". He shook his head sadly and told me that he would pray for me. I think it was just one of those situations that seemed too ridiculous to be true, so the socially appropriate responses were absent.

Three, I watched the heart rate monitor as my heart rate climbed to 260bpm before blacking out. I woke up with a crash cart next to me. I think they used it - Kirsti will have to confirm that one though, because she was there. Sorry, Kirsti! After that, they put me on some sort of old-fashioned automatic defibrillator, which did its job at least twice that I can specifically recall (but as I said before, I was pretty out of it).

Oh wait, there are four interesting things. The fourth thing was that, in all that time I spent lying there, bored, in between naps, wondering if they would let me continue my holiday, I also mused over how they would get me out of there if they were going to ship me home. "Ha, ha," I thought. "Wouldn't it be funny if the air force came to get me? Because I really can't see how else they would fetch me from a town in the Andes..." Then I promptly forgot this musing... until Kirsti and I arrived at the Cuzco airport on the way to being transferred to Lima, and the ambulance pulled up next to a Peruvian Air Force Lear jet. I had a bit of a giggle at that one. I also had a bit of a giggle at four small Peruvian men trying to manoeuver my stretcher into the plane. 6'2" people can be inconsiderately cumbersome like that.

After the flight (during which I REALLY needed to pee, but which was simply not an option), I ended up at Clinical Anglo-Americana in Lima, aka the British-American Hospital. It's in the toffy end of town and is quite clearly full of people with more money (and that includes the staff). Poor Kirsti was in the room/A&E cubicle whilst I peed into a bedpan (I was quite proficient at it by this stage and can unfortunately now list the correct use of a bedpan as one of my wilkkid skillz), but hey, we're good on the massive overshare these days. After a lot of mucking about I was admitted into the pleasant and cushy (it had cable TV!!!) ICU, developed a bit of a crush on a nice young doctor, stayed there for seven days and was sent on my way.

Initially they went conservative, assuming that I had been correctly diagnosed through years of fairly extensive testing by Western hospitals, and suggested that my elongated QT interval was caused by toxicity from Tegretol, my epilepsy medication, because I was on such a high dose in an effort to control breakthrough seizures (BECAUSE I DIDN'T FREAKING WELL HAVE EPILEPSY!!!). But then I pointed out that my last dose had been three days previously and that I had vomited up the most recent one, therefore the medication would be unlikely to be having any effect on my QT interval. That's when they rethought it and decided that it was either Long QT Syndrome, or that plus epilepsy. Back in Australia it was determined to be the former, not the latter.

The insurance company (CoverMore) flew my mum over to see me and paid for her accommodation nearby. They also flew an A&E doctor by the name of Jeff in from Canada to fly home with me, and the doctor in charge of my case at the hospital in Peru kindly recommended first or business class travel, bless his cotton socks. And that is how I came to fly business class from Lima to Miami, first class Miami to LA and business class from LA back home. It was niiiice.

Mum was stuck in cattle class.

Also, if you want to get through queues faster at airports, and you want Americans to be more polite to you, make your way through airports in wheelchairs.

Just a quick note on CoverMore - I have been nothing but thoroughly impressed with them. They have insured me twice since then, despite the fact they must have a big fat file in front of them topped with a bill for about a quarter of a million dollars for my repatriation. I suppose that now I am correctly diagnosed and treated, they see me as less of a risk than I was previously. I haven't truly tested them yet (yet!) - my only trips thus far have been a cushy package deal to Thailand and a South Pacific Cruise, but they didn't bat an eyelid at insuring me for my pre-existing condition for those destinations once my doctor signed the form. BUT, I have heard other people complain about how hard they are to deal with, including one friend whose travelmate actually died overseas, and whatever followed seems to be too traumatic for him to talk about, because I've asked and he didn't really want to talk about it. Maybe it depends on who you deal with on the day or on what the situation is. Maybe they treat the living better than the dead. Who knows.

Anyway, a few days after landing in Melbourne, I had an ICD - implantable cardioverter defibrillator - implanted at the Austin Hospital. I'm going open slather here and don't care if I get sued for defamation, because the surgeon, Angus Hamer, was as useless as tits on a bull. Not only did he give me zero information about my condition (he told me about ICDs but that was it), but he also didn't give me a follow-up appointment besides having the ICD interrogated, and given that that is done by a technician who passes the information on to the doctor, I don't really count it. At this point I had absolutely no idea what my condition meant for me or my lifestyle. I'm fine with the Peruvians not telling me - I was in transit and there was a language barrier - but he should have known better.

The information I had was more or less limited to what it meant to have an ICD, and what the physiological cause of Long QT Syndrome was, but not what the triggers were, and not how it would affect me. The nurses at the Austin had given me most of the information - despite what I said earlier they were actually quite good like that - and I was treated like a minor celebrity at three hospitals in two countries because apparently LQTS really is that exciting, but that was about the extent of it.

So I went back to work about 4 weeks after surgery (the pamphlet says I would be ok to return to work after 2 weeks)... but nobody told me that the 2 week recommendation was for the recovery from surgery alone. It was just cushy work in the city for a couple of weeks before moving to Adelaide to start a new project, but in hindsight I wasn't even ready for the city work, because I remember my heart playing up quite a bit on the walk to and from the train station.

I'm not even sure whether I even made it through my first week of work over in Adelaide and had just commenced my second, or whether it was the second day there when I literally hit the deck at work (I suspect this was the case). I remember I had gotten excited about the fact we were having a BBQ and jumped up to go and get food (it's all about food for me!), and I got most of the way to the tea room via the decking when I got dizzy. So I sat down promptly and put my head between my knees. I remember my mate/workmate Daniel asking if I was okay, and I remember shaking my head no, and the next thing I knew I had woken up in the recovery position with a bunch of these big, tough construction workers who I had known for two years looking about as pale as you can imagine under their all-day-sun tans, ready to perform CPR if I needed it. True to form, the first thing I did was apologise for causing a fuss. I do like being the centre of attention, but only for the right reasons.

Despite my prostestations to the contrary (because of the lack of information I had received), an ambulance was called (with a cute ambo on board) and I was shipped off to the nearest hospital, the Lyall McEwan in the delightful Northern Adelaide suburb of Elizabeth. As a wee taste of the area, there were no fewer than three pairs of armed police guarding three different patients, oh, and then there was The Patient. I initally heard The Patient paged and asked to return to the Emergency department. Apparently this did not occur, because about half an hour later I heard the doctor on the phone to him (about the only good thing about the Lyall Mac was this nice young doctor named Ben. He had a shaved head and he was tired and busy, but he was good at what he did and made time for me when I needed it, e.g. when my defibrillator discharged for the second time (the first time I had been unconscious) and I yelled out in fright and the whole ward came running). He asked The Patient to please return to the hospital so that they could take his canulas out. He then proceeded to explain that the reason for his chest pain was that his old stab wound had perforated his diaphragm and it had healed open not shut, and so his gut was pressing against his lung and causing the chest pain, and could he please come back in so that they could discuss surgery. Oh. My. Gosh.

Oh, but then it gets better.

There was a hobo there, drying out. Judgy, judgy, I know.

It took me eighteen hours to convince them to give me my heart medication.

I was semi-admitted overnight (they have a back ward for A&E where they keep troublesome patients such as myself for observation), for a heart condition, and they had to move me to two different beds and play around with three different sets of telemetry (heart monitoring) equipment before they made it work, which meant that I wasn't being monitored for nearly an hour, and nobody seemed to be particularly concerned by that.

When they DID give me my heart medication, the nurse - who used to be a vet nurse, but who then decided to be a people nurse - took "take with water" to mean "dissolve in water" and attempted to dissolve my medication in a glass of water.

I was so effing glad that I was out of there. If my mate/workmate Scotty hadn't brought me a couple of magazines and some chocolate, and he, Daniel and Mark hadn't visited, I probably would have run screaming out of the place, my sexy hospital gown flapping behind me in the breeze. At this point, they had referred me to a specialist who I had never actually met, nobody had told me anything about LQTS, and I was on about 1/4 of the dose of beta blockers that I am now. I also asked at what point I should worry about being zapped, and when I should come to the hospital, and they told me that the defibrillator discharging meant that it was doing its job and that I shouldn't really worry about it too much.

So I was dicharged the following day, and spent that day on the couch, and the next (because I figured I should, not because I felt the need to), and returned to work on the Friday. On the Friday night, I had to move accommodation. I remember my heart started to throw in a couple of extra beats when I chucked my pack up into the back of Scotty's ute (note to the reader: every time I have a cardiac episode, I'm not supposed to drive for six months and so rely fairly heavily on the kindess of others to get from Point A to Point B), and it took a while to settle down. It was okay by the time we got to the hotel but when I got out of the car and had taken about seven steps across the carpark, things went pear shaped again. I sat down in the middle of the carpark pretty fast, realised it wasn't going to be enough and lay myself flat, and felt the darkness come crashing in before being zapped back to consciousness. I wasn't totally out when it happened but it wasn't as scary as when it happened in the Lyall Mac.

Scotty helped me up, got me moved to a room on the ground floor right near the entrance and stayed the night on the couch. It was a teensy, tiny, shit couch, and he can't have gotten much sleep, bless him. And neither did I. Every time the bar fridge kicked in over the next few nights, I jumped a mile in the air. I guess the electrical click reminded me of a zap. To this day, fridge compressors, kettles and toasters give me a bit of a start when they click on or off.

The following day, Scotty went out to get me supplies for the weekend (= food and magazines), then went out and did his thing. He and Dan visited me that evening and brought me dinner, and then I was left to my own devices for the night. That was one of the scariest nights I have ever had - alone for the first time since I realised things weren't that great, and with that damned fridge compressor kicking in all the time, in my half-conscious non-sleep I was convinced I was being defibrillated again and again and again.

The following day - the Sunday - as I lay miserably in bed, afraid to move, limiting my fluid intake as much as seemed reasonable so as to avoid those five steps across the room to the bathroom (but not so much as to dehydrate me), I received a text message from my old Kiwi housemate Sheepy. I guess Dan or someone else had told him what I was going through. Sheepy and I had happily shared many a theological debate over the dinner and coffee tables in our year living together, and so the effect of what he texted me - the (I presume abridged, because I haven't been able to find that exact wording since, which is a pity because I really liked the form of it) text of Psalm 28 - was particularly poignant. He also referred me to a couple of other passages in the Bible. This is a pretty big thing for me to admit, because for the first time I felt like someone was listening to my prayers; that I wasn't alone. I had prayed before but this was different, somehow.

On the Sunday night, Scotty offered me the spare bed at his apartment so that I could spend the following day in a place more home-like than a hotel, do my washing, veg out in front of the telly and rest up. To me, it was also good to know someone was shouting distance away. So we transplanted me with my overnight bag and my dirty washing. I had a sleep in and watched a couple of DVDs, including the very odd My Own Private Idaho (which I had never seen before but heard was good... um, it's not. Don't bother), and was having an afternoon nap on the couch when my heart started to play up again. It culminated in another zap being delivered from my ICD, which severely shook my confidence because I was so far from doing anything physically taxing it wasn't funny. Having been told at the Lyall Mac not to worry if it happened again, and this being the second time it had happened since being told that, I called Scotty and told him what had happened, mainly because I just wanted to talk to someone. In the end someone from work called an ambulance, and they showed up at about the same time as Scotty and Dan came to check I was okay. The male ambo was HOT, so I guess I can't have been all that sick to have noticed that... hehe.

They carted me off to the Royal Adelaide Hospital, which was a much more pleasant place than the Lyall Mac. For starters, there was only one pair of armed policement at the RAH, not three, and no crazy patients on the loose. I was admitted to the cardiac ward (which reminded me of my university science labs, built in the late 70's/early 80's) after only a couple of hours, and the staff there were incredibly competent, which put my mind at ease. In particular a middle-aged male nurse called Nigel delivered exceptional care, as did a fit, tallish, blonde, middle-aged female nurse with a tired face and kind eyes whose name escapes me, but who was particularly knowledgable. In the three (four?) nights I was there I was visited every night by Scotty, Dan and Mark, my (work)mates. I don't know how well I would have gone if they hadn't come, and it can't have been easy for them - there's not much you can say to the girl in the hospital bed whose life is pretty well f*cked up for good, who had done nothing all day but be given bad news, especially when no doubt you'd prefer to be at the pub.

At some point during my stay at the RAH I met my current doctor, an electrophysiologist by the name of Professor Prash Sanders. The meeting itself was pretty traumatic - he more or less brutally laid out for me what it meant for me to have Long QT Syndrome. At that point, it involved not driving, not hiking, no competetive sports and basically not doing anything strenuous. He was the fifth doctor in two countries over three months, and that's how long it took someone to tell me the truth. Suffice it to say, that sort of message was not well received by me because it effectively meant the end of life as I knew it. 

Except the competetive sports bit. I've always been crap at sports, so I didn't much care about that part.

Shortly after Prash left, a hospital chaplain by the name of Karen happened by and saw me sobbing my little heart out. She wasn't trying to push her religion; rather, she was just lending an ear. A few months later she sent me a letter to see if I was okay. I guess I must have stuck in her mind because I know that getting information out of hospital records (such as names and addresses) isn't exactly straightforward! We met up for coffee once. Part of me wishes that she had been more capable of intellectual religious debate, because I think I was looking for answers, and had she been able to give me a good one she may have sold me on the whole Christianity thing. As it is, I have come out of the experience thoroughly convinced that we are not alone in this life, and knowing that there must be something more than our time on earth because it simply has to get better than the hell we go through here. Or at least, than the hell I went through in that hospital room at the RAH.

Exerpt of diary, Saturday 30th August 2008:

"The generosity of spirit and caring nature of those who surround me never fails to astound me. Yesterday I received a letter from the chaplain at the RAH, extending an invitation to continue the conversation we began when I was in hospital. It really touched me that she'd been thinking of me - it is quite a surprise, at times like this, to discover how many people you actually have in your corner. I remember saying to her that I felt I was a burden on my work friends, particularly Scotty, so she [had] asked me whether I would do the same for them. My answer was instant - "in a second"..."

After they released me from hospital my work flew me home and I sat on mum's couch for a month, watching a hell of a lot of The OC on DVD, doing jigsaw puzzles and contemplating what relatively sedentary things I could do with my life if I could no longer be an environmental manager for a civil construction company. Ideas that crossed my mind included cake decorator and dress maker. Incidentally, I'm presently teaching myself the former skill in order to produce my own wedding cake, and do plan at some point to learn the latter. At the end of the six weeks I visited Prash in Adelaide and he re-doubled the dose of beta-blockers that he had previously doubled at the RAH, and ordered another fortnight on the couch. It was during this time that mum and I finally made our peace with each other. We do still drive each other mad but there's more respect and understanding there, I think. This whole thing hurt her as much as it hurt me, if not more.

Exerpt of diary, Sunday 24th August 2008:

"How frustrating! Just as I was beginning to feel better, and to hope that I would begin to lead a normal life again, my heart plays up a bit. It's almost like it's reminding me that it's there, that I'm not as bulletproof as I once thought I was. I was right when I said to mum last night "When you have two good days in a row, you wonder how long until the next bad one". I suppose I should be glad of those two good days - I am - but it doesn't alleviate the frustration of 2 steps forward and 1 step back"

I returned to work in Adelaide in the middle of September, and continued to receive incredible support from those same three people. The company in general was pretty good, although in hindsight it would have been illegal for them to be anything but.

Exerpt from email to mum, dated Wednesday 17th September 2008 (2 days after returning to Adelaide):

"... I'm a bit lonely and in a constant state of mild anxiety, which really can't be helping things. This whole situation is quite overwhelming, really, and it's all I can do not to fall to pieces. I know, baby steps are required, but feeling Not Quite Right (henceforth to be referred to as NQR) every time I take more than about ten steps is just not fun... a trip to the bathroom requires some forward planning, especially considering I walk at a snail's pace... I'd better stop whinging or there's a fair chance that I will dissolve into tears in the middle of the office, which would not be a good thing. I know I need to give this a chance but it's really, really hard. I miss home and my family and friends and I miss having people around me of an evening. And I hate having to rely on other, non-family people. I mean, seriously hate it..."

About a fortnight after I returned to work I had another appointment with Prash, which I would probably deem to be my turning point. It was during this appointment that he told me that yes, from time to time, this is what it would be like for the rest of my life. And somehow, knowing that was a relief.

Exerpt from diary, Tuesday 23rd September 2008:

"Well I never thought that I'd be in such a good mood after being told that how I'm feeling at present may be just about as good as it gets, but I'm all but glowing! I suppose that a lot of it is because today is probably the best day that I've had since I was in Peru. I know, the day's not over yet, but if I work on a percentage then even if it goes downhill now, it will have been 95% good. Awesome. The good news is that even though they don't know why it happens, and they can't predict when the heart problems tend to arrive in clusters, that they can be up to 5 years apart..."

Apparently LQTS cardiac episodes come in "clusters", of indeterminate size and indeterminate frequency, but that these "clusters" can be days, weeks, months or years apart. They don't know when and they barely know why. They have vague indicators as to what can trigger an attack - there are several known genes responsible for LQTS, and I have been tested and found to carry the gene for LQTS2. Apparently this means that emotional and physical distress (such as having a virus or being generally run down) can trigger it, but in addition to this it can be completely random. I don't know why I found that comforting... Stability in instability, perhaps??

After It All Went Horribly Wrong, but before I went to Adelaide, I visited the neurologist under whose care I had been all these years to confirm what the doctors in a developing nation had suspected - that I had Long QT Syndrome instead of epilepsy, not as well as. I had been "lucky" to get into the First Seizure Clinic at the Austin Hospital, because it meant more expedient access to testing and to quality care, and I suppose being in a situation like that forced me into a box in which I did not belong. He picked up my file - quite thick by this stage - and went through it, appointment by appointment, test by test, and on every page of his notes he found the word "atypical".

I remember him saying that he couldn't believe that he hadn't picked up on it sooner, especially as he had done a minor specialisation in cardiology before switching to neurology. My father, normally a peaceful and gentle man, was so incredibly filled with rage at the offhand manner in which this situation was dealt. I kind of thought he was going to hit him. There are a couple of things that have stopped me from sueing the pants off the doctor and the hospital - one, I'm not the litigious sort and don't believe that sueing is the way to go. We want to be LESS like America, not MORE. Two, I'm not a big fan of ruining other peoples' lives, although his (in)actions may have lead to the loss of mine if things had gone differently. Three, if it were not for my diagnosis, there a million adventures I would never have had, and a million experiences that I (or my parents) would not have allowed because I would have been wrapped up in cotton wool. There would have been no hiking, no Honours year spent solo in the high country, no job in construction (and therefore no eventual meeting of Grant), no trekking through South America. I would have been too scared. Sometimes I still am scared, but I know how much I have gotten away with over the years and realise that statistically, as long as I'm careful, I should be okay. Ish.

I wonder whether anyone will find him through my naming the clinic and the hospital and strip him of his qualifications. I hope not, but only if he learnt his lesson. If he didn't learn his lesson, then I hope he gets whatever comes to him. Nice chap, though. Reminded me a little bit of a mouse, and I quite like mice.

So what has it meant for me? Mainly loss of the carefree, "Invincible Ness" life I knew. I used to work and play pretty hard and I just can't do that the way I used to, although I suppose I do still push the limits. At times I struggle to walk up a shallow incline, or three steps, or roll over in bed, and on those days I feel like a cripple. That's probably both politically incorrect and completely inaccurate (because how would I know what a cripple feels like??) but for a girl who used to leap across mountains in a single bound (by which I mean puff and pant and sweat and swear and grunt her way up and over them quite slowly) and who now second-guesses her capabilities as she eyes them up, it's a pretty big change.

But mostly it's the fear that gets you, and you have to conquer your fear on a daily basis because otherwise you'd still be sitting on your mum's couch, watching The OC. When your heart suddenly runs fast for no reason as you sit there quietly, minding your own business, it freaks you out a bit. So does being unable to sleep because of a pretty severe bout of heart palpitations, like the last few nights, which is kind of a catch-22 because the less you sleep the more susceptable you are to it, and of course, that plays on your mind a bit. In the beginning I would ring mum to distract me when my heart played up even the tiniest bit, and, once I met him, on the occasions that he was working somewhere with phone reception I would ring Grant, but bit by bit I am learning to just suck it in and deal with it silently. And sometimes I'll call someone for a chat and not tell them that they are doing quite an admirable job of distracting me from my defect.

I have tried to live as normal a life as I can, and I think I've been doing okay. Since my diagnosis I have travelled overseas, joined a gym, met and become enaged to the love of my life, lost a significant amount of weight through diet and exercise, continued my work, jogged once or twice, done a high ropes course, been able to drive again, snorkelled in open water and done some light hiking, including climbing Mout Remarkable with my fiance, Grant, and I hope it is just the first of many mountains. We are actually getting married at the foot of Mount Remarkable in November. There are so many more places I want to travel to, and so many mountains I want to climb, and even though my greatest cheerleader Grant tells me that I can do all of these things, part of me knows that doing every single one of them could be construed as seflish, because in attempting to conquer my own demons I may be risking my life, which would affect the lives of my loved ones. But then sometimes I think, f*ck it, I just need to do this. I need to beat this.

I can have children, which I want to do, and the risk of a cardiac episode is actually lower during preganancy, but my offspring have a close to fifty percent chance of having LQTS. Modern technology means that there are ways around this, and I have no doubt that some geek in a lab will have found me a cure within about the next ten years, but let me put it to you this way: if there was a fifty-fifty chance of being hit by a truck every time you crossed the road, would you ever cross the road?

And what does it feel like? Well, I mentioned the fear before. Interestingly, it's not so much the fear of death as the fear of embarassing myself, or of causing a fuss, or of scaring people. And there is also the fear of sustaining brain damage during an episode due to oxygen starvation (which I am quite sure has happened before), although now that I have an ICD to short-circuit the process, the chance of that is a lot lower.

On top of that, as you lie there, feeling your consciousness crumble in, feeling yourself lose your grip on the light, your fear overwhelms you as you fight it and lose. And as you come to, it feels like you have been drowning. It feels like you are underwater, and you are fighting your way up through layer upon layer of heavy, black water and you are scared you're not going to make it to the air in time and that your lungs will burst or that the light will go away. Every layer you fight through, the water/air becomes a little bit less thick, and when you finally make your way back to the light, your ears are ringing loudly and your face is numb. I think the only way I can describe it is pins and needles in your head, and I suppose that is fairly apt, given that pins and needles is caused by the oxygen supply being cut off from your tissues.

But it doesn't always go as badly as that - it can range from some fairly innocuous palpitations to something a bit more serious, like at Easter last year. And learning that it's not always going to be the worst-case scenario has been my biggest hurdle in accepting the hand I have been dealt.

Anyway, I know that was a long story, and it probably got a little bit boring after the bit with the air force and the hot Latino doctor and the first class travel, but it's my story. If there is anyone who has any questions or comments or wants to share their own story, then hit me up on the guest book, or email me. If not, well, thanks for making it to the bottom of the page. And if you're a potential employer, rest assured that I am stubborn enough to ensure I don't let this get the better of me and as such perform my work tasks adequately, but am still smart enough to do them safely!!!

Honour role as per the above link.

2 comments:

  1. You dirty liar, you did not giggle about the Peruvian Air Force thing. You sat in the back of an ambulance yelling "AIR FORCE!!!!!!!!!! AAAAAAAAAAAAAAAAIR FORCE!!!!!!!!!!!!!!!" at me over and over again while gesturing at the plane repeatedly ;)

    Oh, and I think the difference with Covermore was because we were listed as travelling companions and because we contacted the Consulate, who contacted the insurance company.

    Love you forever, even if this was the longest post of all time ;) xxxxxx

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  2. Wow, Ness, that's quite a story! I think I knew most of it, if not all the details.

    Hopefully other people in a similar situation can Google their way here. I know my posts where I've mentioned Grave's Disease get quite a lot of visits.

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