Saturday, August 29, 2009

The Etape de Tour Saved My Life - part 3

How to spend $50,000 on titanium components and have everyone feel good about it.

The continuing story of how a perfectly innocent medical certificate signoff for an Etape de Tour bike race entry form revealed a collapsing aortic heart valve, resulting in 44 year old cyclist Nigel Dalton having open heart surgery in early 2008.

Part 2 was here if you missed it. It'll all make much more sense if you read the earlier ones first.

The 3 weeks between diagnosis with a failing aortic valve and dangerously enlarged heart muscle (March 12, 2008) and being admitted to Epworth Hospital for open heart surgery (April 7) flew by in a blur.

I found myself awake at 2am on more than one occasion, looking out from our house on Canterbury Road with that clarity of vision that is the fabled gift for those facing their maker.

What kind of dumb crazy luck had caused me to enter the first bike race in my life to require a medical certificate for entry, triggering a trip to a GP who just happened to pick my symptoms as worthy of a second opinion from a cardiac specialist, who had caught me weeks or months from certain expiry?

How could I be suffering no symptoms? I ran 3 stories up to the Lonely Planet cafe 2 steps at a time most days, with not a hint of breathlessness or chest pain. I was riding well over a hundred kilometres a week.

I wish I could say the artistic photographs I took whilst sitting there were as lucid - though apparently, my time was not up yet.

Looking at my Palm Treo with my work calendar was very disorienting - 'Nigel Sick' it said (code words to enable meeting cancellations while my life was sorted out). I was never sick! Sick is for other people. I dwelled on the ignominy of not even being able to say "I feel so much better nowadays" after surgery.

My angiogram on 26 March clued me in to what I was about to experience as a hospitalised human being. A relatively simple day procedure, it was a gentle introduction to Ward 6 at Epworth. How they work out where a long wire goes from your groin to your heart, and drive it down all the cardiac alleyways by remote control beats the hell out of me. I was pretty embarrassed having 8 people work on my groin, most of them sassy, good-looking young medical professionals, teasing each other about their footy teams. It was like being on House.

The results came through clear, and I was confirmed as a good candidate for a Ross Procedure to be undertaken by Peter Skillington.

The bruising left by the angiogram gave me a spectacular groin - coloured not dissimilar to my attempts at artistic photographic expression above! Now a 'born again' fanatic of the General Practitioner I raced to show John the result, fearing I'd suffered something untoward. He sent me home reassured, though I think the scale of the bruise did impress him somewhat!

I was now off the bike completely (angiogram induced groin injuries included!), venturing out for walks was the most athletic excursion I dared to do. I paced out some recovery strolls for when I came home and I'd need to walk every day as part of the rehabilitation process. On April 1st I went to visit the Trewrehab team at the MSAC facility near home in Albert Park.

That was a critical moment in the whole process, when I look back in reflection. Recommended by a friend, the choice of a private, gym-based rehab program over the hospital program put me straight into a mind-space that was great for recovery. More on that later anyway.

The last decent training ride around the hills (and gravel roads) of Alexandra and Eildon, Victoria

The other critical moment was the way Lonely Planet treated me as an employee. If you suffer what I did, pray you have an employer like mine in your corner. I'd tried to be staunch and head back in the day after the discovery (March 13th). I gritted my teeth through the walk to HR to outline the facts, and barely managed to blurt out "it's bad.." before collapsing in fits of tears.

The facts were upsetting, but not on the scale of my reaction. It was plain, old fashioned shock, which had taken 18 hours to set in, and among the people I spend most of my waking life with (which is kindof a sad reflection of modern life, but...) I felt it all collapse in on me. To have suffered zero symptoms, and be dropped from a great height into the 'gravely ill' bucket was too big a transformation for 18 hours.

It set in train an amazing backstop for me, knowing that my job was covered at a critical time on a critical website project, and that time off work would not be an issue. I went home that morning, and apart from a trip back to have lunch with a few of the team, I focused entirely on achieving a sense of health that would get me through the operation. I thank them all.

Google was a good friend in this preparation time as well. Through it I found an amazing blog called Adams Heart Valve Surgery Blog, complete with a book the blogger had written covering pretty much every question that was arising in my mind about open heart surgery.

The author had been through almost exactly what I was expecting to experience. His Ross procedure went smoothly, and I was able to read (actually wince through) snippets of detail on a regular basis before being somewhat overcome by the discomfort of knowing all this was about to happen 'at a store near you'. The power of a blog where people could share stories and get advice from others with their particular age, health and life circumstances was amazing. I still read this blog today.

Being 44, fit and with no major vices I was high on the list for a donated heart valve. I learnt that many of Australia's heart valves come from deceased people who have had brushes with the law (terminal brushes with the law in fact), and a disproportionate number of their families make an effort to balance the world by giving the ultimate gift.

It would have to be a crappy conversation to have as a medical professional, to ask a family if they would donate body parts that can save other people's lives, when the worst news possible about the failure to save the life of your loved one has only been delivered minutes before. Solve it now everyone - sign up for a donor card NOW.

Anyway, I was about to get a little bit of Australian in my heart.

One thing the reading about Ross Procedures gave me was a 'thank goodness I'm not going mechanical' attitude, and the drug Warfarin seemed like a lifelong habit that was worth avoiding. This would come back to haunt me in a couple of weeks.

The bureaucracy of major surgery also had to be battled. With GP, surgeon, cardiologist and hospital all lined up, my Health Insurance company HBA now needed to be consulted. Crap! April 8, the scheduled day of surgery was 3 weeks short of my stand-down period for major surgery, having only arrived in the country in April 2007. Panic! This is a $50,000 operation.

Too often all we read about insurance companies is their faceless inhumanity, with business plans and 'shareholder-value' strategies where their mission becomes to turn down every claim possible on technicalities, or stretch people out for long periods of suffering. Not HBA folks - they could not have been better. I spruik them without conscience to anyone I meet now. They approved the surgery in record time, recognising the need (and opportunity) to move quickly.

Thus, on Monday April 7, at lunchtime I checked in to the Epworth hospital (checked in is right, it's a lot like a hotel in a lot of ways), hung my dignity on a peg in my locker and lay back to read bicycle magazines and meet the team who would do the surgery.

I'd never even known the existence of a Perfusionist before. Apparently if you finish top of the class in anesthesia school, you stand a tiny chance of being selected into the inner circle of specialists who keep your blood circulating when a heart is stopped for open heart surgery. I was speechless - the final point of a week in which I reflected that I had grown quieter every day, withdrawing into the inevitability of it all.

The dreaded 100% body shaving exercise was entertaining. It didn't happen until about 8 at night, when the dayshift person doing it had long left and the after hours substitute was called out especially for me.

Ironically, he was about the hairiest person I had ever seen, and with minimal English he managed to communicate that he was deeply puzzled that my legs were already shaven ("cycling, shaving, go together, go faster ..."). Three sets of clippers later (all blunt from a day's hard work) and all the possible conversation exhausted, I took the iodine shower and retired, suitably yellow, to watch my last TV for a couple of days.

I might be lurid yellow, but there was no chickening out now.

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