Simple things

Sitting in a waiting room at The Alfred hospital I’m having trouble believing that it has been just over 12 months since my heart transplant.

I’ve lost count of the number of clinics, biopsies, scans, ultrasounds, infusions, blood tests and medication changes over that time.

Until now the heart transplant unit doctors and nurses have wrapped me up in cotton wool, managing every step of my recovery. They do it for all of their patients.

The first 12 months is about adjusting to the medications necessary to prevent the heart rejecting, learning to tolerate their side effects and rebuilding, both physically and mentally.

In the next month I have another round of tests. Some of the tests I’ve never had before.  If the results are fine my doctors will give me much greater freedom to ‘fly off into the world’. They won’t need to monitor me nearly so closely.

I still have a long way to go but, judging by some of the transplanted friends I see around me in the waiting room, I’m doing well.

One of the most enjoyable things since my transplant has been sitting on a blue-sky winter day soaking up the warmth of the sun.

The so-called big urgent issues of my previous working life now seem so far away, and so trivial. It’s been a hard way to discover that simple things and family matter most.

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A suitably amazing story

It’s about three months since my heart transplant and it has been every bit the ‘roller coaster ride’ my doctors promised.

I’m living close to The Alfred hospital so that I can attend compulsory clinics, physiotherapy and education programs each week to prepare me for a return to normal life.

As with all organ transplant recipients I’m on a list of medications (16 types, 203 tablets each week), either to help prevent my body rejecting the new heart or to deal with various side effects.

 I’m undergoing regular ECGs, ultrasounds, x-rays, MRIs, blood tests and biopsies of the heart. The biopsies are where a catheter is inserted through an incision in the neck into the heart chamber so that three or four heart tissue samples can be taken for laboratory examination.

Biopsies are about as much fun as they sound, but they are the only definitive way of gauging whether the heart is being rejected by the body’s immune system. Biopsies are taken weekly for the first six weeks, then fortnightly and eventually monthly for one year.

My first three biopsies after the transplant showed significant ‘rejection’, which was not the best way to begin a relationship with my new heart. As a result I spent weeks on a hospital ward, bored out of my mind, while the doctors increased my immunosuppressant medications, which included ‘nuking’ me (my term!) with infusions derived from horse and rabbit anti-bodies.

One of my doctors said I had a “kick ass” immune system that in normal circumstances would have kept me free from a range of illnesses for years. Sadly, “kick ass” immune systems aren’t good news in transplant patients. Rather, the doctors use drugs to lower the immune system to a compromise level; between the heart rejecting and retaining at least some level of immune system protection against viruses and bacteria.

Everyone has different tolerance levels and side effects to the medications during this ‘balancing’ period. In my case I’ve experienced painful mouth ulcers, severe tremors, oily skin and acne, blurry vision, sleep issues, blood noses and weight gain around the stomach and face.

The medications also cause sensitivity to the sun and potentially narrowing of the arteries, diabetes, gout and low bone density, among other conditions.

For the rest of their life transplanted patients must abide by the equivalent of a ‘pregnancy diet’ – no soft cheeses, no oysters, no runny eggs and no food from a Bain Marie. In other words, no foods considered a high risk of introducing harmful bacteria which may compromise a lowered immune system.

Sadly, my aim of returning to swimming laps at the local pool is looking unlikely. Heated indoor swimming pools, spas and saunas are high-risk for spreading bacteria and viruses. So too are crowded shopping centres, cinemas and public transport. While not to be avoided, apparently these places are best visited with caution, usually when they’re not crowded.

Heart transplant recipients typically have a higher-than-normal resting pulse of between 100-115 beats-a-minute. This is because there are no nerves connected to a transplanted heart. For the same reason, transplanted hearts take several minutes to pump at a level necessary to maintain vigorous exercise. The heart rate increases in response to changes in hormones circulating in the blood, in the absence of messages via nerves.

Transplant patients automatically have their drivers licence suspended. It’s not until months post-transplant that VicRoads may reinstate the licence, subject to all sorts of medical assurances. Jumping those bureaucratic hurdles is my next quest. Not having a licence is very restrictive and I’m hoping to be released to go home from The Alfred later this month (Jan 2016).

I’m writing this blog to give a glimpse into the immediate post-transplant journey of a heart transplant recipient. But of course, tens-of-thousands of transplant recipients have had similar journeys before mine.

I am most fortunate. Fortunate firstly to be alive. Fortunate to have amazingly supportive family members, friends, neighbors and work colleagues. I am also fortunate to have the most professional and supportive medical team imaginable.

One of my nurses light-heartedly suggested recently that I make up a “tall story” about how I received the multitude of scars which now cover my torso from various heart procedures.

I thought about that, then decided I already had a suitably amazing story:

“I’ve had a heart transplant.”

May the force be with you

I’m writing today from DAKI Force Central. It’s brand spanking new, if just a little small.

For the moment the ‘centre’ operates out of a hospital room in Melbourne.

Sounds weird I know, but we’ll soon be relocating to more appropriate digs nearby the hospital, then ultimately, months ahead, back to beautiful Barwon Heads.

DAKI (David, Austin, Kelli and Izzi, our cute black Kelpie) is indeed a force, in the truest sense. However, perhaps we should more accurately be called ‘team DAKI’.

We stand together as a tight little family, stepping our way through a myriad of challenges brought on largely due to my bad health.

Team DAKI’s Kel and Austin

Frustratingly, team DAKI’s progress has for several years has been little more than a slow-motion-blur, drifting as key matters beyond our control played out.

Recently that all changed. You may wish to view other blogs on this site to learn why.

Over the years I’ve run incident teams for for high-profile emergencies and politically-important events. I’ve constructed national communications campaigns. I’ve tackled projects I was told couldn’t be achieved, and succeeded. I’ve run large multi-disciplinary work teams.

DAKI Dave, a few years ago and in much better health

None came close to being nearly as important as the project our little team DAKI is about to tackle.

Ours is a challenging quest. A quest we didn’t ask for, but one we are accepting with vigour.

Team DAKI is now taking back control of our respective lives, resetting our directions, laying out plans. The march back has begun.

Simple lessons from over the years apply beautifully to team DAKI’s challenges ahead:

• ‘Team play’ is everything – a team looks after its own.
• Communication is crucial – strong, honest, open and often.
• Set ultimate, believable and achievable goals – then head for them.
• Each person has a role to play, clearly known to all, which uses their natural strengths.
•  Plan well – understand that BIG things are best achieved through SMALL steps.
• Expect challenges and head winds – be prepared to compromise, but not on the quality of the ultimate goal.
• Most important of all, remember to have fun along the way (Kel: over to you, my ‘maestro of fun’).

Yes, it’s sounding bureaucratic. That’s because once it’s there you can never really take ‘the public servant’ back out of the boy! Sorry.

Key DAKI team member Izzi, ready for action

But in simple terms, we are reclaiming our momentum at school, in work, in health and in ‘family fabric’.

Frankly, I’m humbled that my little team DAKI family has stayed so tight on our way-too-long road trip. I’m humbled by the flowing love of Kel, Austin and Izzi.   Big hugs.

There’s also been a wider team DAKI support group, without whom we may well have unraveled by now: our generous families, our friends, great neighbours, understanding work colleagues, hospital staff and those people around our little town who we hardly know, but who have been following our journey.

Thanks so much all.

Team DAKI is back – the force is back with us. Now watch us hustle. See us move.

May the ‘force’ be with you all too.

Footnote: This is a revised version of my earlier blog under this title.  The revision removes some of my hospital-induced incoherent ramblings!

It’s a strange old place, a hospital

Most of us at some time in our lives spend a stint in a hospital. For me recently, it’s been much more time than I’d have liked.

Hospitals have a life all of their own.

The large city hospital I’m calling ‘home’ moans into life about 6am. And I do mean ‘moans’. Somehow the intensity of the air conditioning begins to rise, creaking and blowing, as if the whole building stretches ready for another bustling day.

Talking in the corridors begins. The clatter of the ‘weighing chair’, pushed around from room-to-room to help record the first of many patient ‘observations’ for the day. Blood pressure, temperature, heart rate, blood tests, ‘take your medications’ – off we head into another day of routine.

It’s a strange old place, a hospital.

Breakfast lobs. Never quite like home. The novelty of opening packets and plastic trays wears off. The coffee’s never hot, and often cold. A tip for novices: Don’t bother with the ‘hot’ breakfast. Hospitals try, but never succeed. Thanks go to the delivery staff who try hard with a cheery ‘good morning – breakfast’.

As quick as they arrive breakfast trays are whisked away. Meal order forms for the next day completed, not knowing what you might be capable of eating tomorrow. It’s like a big game, guessing what food might actually turn up.

It’s a strange old place, a hospital.

The doctors hunt in packs. Senior doctors swoop in with juniors holding folders, reading out interesting ‘facts’ of someone’s ideas about how you’re progressing. More notes made in folders. Doctor orders given for that day’s treatments. Scans, x-ray, new medicine adjustments, exercise/no exercise – there’s usually a surprise!

Then the orderlies begin to arrive, to push your wheel chair (or bed) to some obscure back ally of rooms with big technology hanging from the ceilings. Each of these rooms could easily double as a fridge. So cold. Don’t understand how people work in them ALL day.

Sit here. Lay there. Breath in, now breath normally. Lift your head. Okay, thanks, I’ll call an orderly to take you back to the Ward.

It’s a strange old place, a hospital.

You don’t pay for the view, which is just as well. You don’t get one! Mine is a wall with windows, with light somewhere from above. At least I know if it’s raining or sunny. The birds occasionally chatter and screech from the courtyard way below. A chainsaw rasps into action somewhere nearby – I’m assuming for the limb off a tree!

Photo: Priceless view from my hospital room. Helicopters coming and going, all day. No timetable patterns. Just when they have to deliverer the next ‘customers’ for medical magic. Possibly the delivery of a donor organ? Who knows, my heart may have arrived this way.

It’s a strange old place, a hospital.

Dinner arrives. Surely not – it’s mid afternoon. Doctors again. Shower, TV and the light fades outside. Quite starts to descend again. Corridor lights dim in sympathy at 10pm.

Time to drift to sleep, listening to the helicopters droning away from their pad. Looking forward to the nurses waking me several times during the night: ‘just checking that you’re sleeping!’

It’s really, truly, a strange old place, a hospital.

So now I have a new heart

So this is me at The Alfred Hospital Melbourne after my heart-transplant.

I’m now up and walking, eating and feeling it’s good not to have the mechanical heart (VAD) attached, even though it kept me alive and getting stronger for 18 months!  So strange.

Have a long (many-months long) roller coaster recovery ride ahead, I’m told.

I have such a wonderful family and the best wife and stepson ever – Kel and Austin.

Just feeling sad that my generous heart donor died, whoever he/she was.  Thinking of that family, but also feeling so fortunate to be alive!

Life is the ultimate gift

Nature intended that I should have died back in March of last year.

My heart function had been deteriorating over many months. At only 56 years-of-age I was very ill.

When my Geelong cardiologist referred me to The Alfred Heart Centre clinic the hospital doctors stunned my wife Kelli and I by telling us that I would not be going home that day. Instead they would find a bed for me on the cardiology ward.

I learned much later that they weren’t confident I would have made it back to Geelong alive.

Within days I had been fitted with a mechanical heart. I still have it in my chest today, attached by wires to a small external computer and the batteries which keep the heart pumping.

I’m alive today through some quirk of good fortune. Some people might say that I cheated death.

This 2kg set of batteries and stuff goes everywhere I go.

After a raft of medical assessments, and weeks of hospital recuperation, I was accepted on to the heart transplant waiting list. Learning that I was on that list was a hundred times better than winning lotto.

Mechanical hearts don’t last for ever. And to be honest, they aren’t much fun.

Their cumbersome and extremely restrictive characteristics provoke love-hate emotions. I’m alive only because of my mechanical heart, yet it’s my mechanical heart that stops me, and my family, from doing so many things that most families consider normal.

Mechanical hearts are nowhere as good as the real thing! And they are normally not intended as a long-term solution.

I don’t know when, or if, a donor heart might one day become available for me.

There are no promises for those of us on transplant waiting lists. Nor are hearts, or any donor body organ, allocated on a first-in first-out basis. Need, compatibility and a host of other factors are weighed up by the transplant doctors. It must be an enormously heavy decision-making process.

Across Australia at any time there is up to 1600 people on organ transplant waiting lists, for hearts, lungs, kidneys, livers or pancreas.

Just like me, all of those 1600 people live in hope of a lifesaving transplant.

Years ago, long before there was any notion of me needing a heart transplant, I had registered with the Australian Organ Donor Register.

It seemed the right thing to do at that time. Like many at that time I’d read about the often ground-breaking advances in transplant medicine. It was the late 1960s when the world’s first heart transplant took place in South Africa. The first transplant in Australia was in 1984.  There have been many advances since.

Little did I know that years into the future I would myself become a candidate for an organ transplant.

I can’t explain in words the conflicted thoughts about my possible transplant that are rattling around in my head: I could benefit from someone else’s misfortune, but also from their immense generosity.

It’s true, we Australians are generous. Research shows about 80% of us are prepared to ‘donate life’, by becoming an organ and tissue donor. Sadly, despite their generous intentions, many of those people have not taken the step of formalising that decision by placing their name of the Australian Organ Donor Register.

And about 30% of people have not discussed their commitment to be a donor with their immediate family. Having this ‘family chat’ is equally important, because even with your name on the donor register the doctors will still seek your family’s consent.

Of the Australians who do know the donation decision of their dying loved one, more than 90% of family members uphold that decision when approached by doctors.

Contrary to popular myth, there is no age limit on being a donor. People of all ages, including those in their 70s and 80s, have saved the lives of others.

It might also surprise you that less than 1% of patients who die in hospital are suitable as organ donors. Suitable donors have usually died in an Emergency Department, or Intensive Care Unit, while on a ventilator and from a sudden and unexpected cause.

Last year 378 organ donors donated to 1117 transplant recipients in Australia. Of those transplants 83 were hearts.

It’s statistically unlikely that you, or others reading this blog, will ever become an actual organ donor. The Australian organ donation rate is about 16 donors per million people.

It’s even more unlikely that any decision you make about organ donation would benefit me. So, my appeal to you today is not one made out of self interest.

Rather, like me, you may one day find that you, or a member of your family, are potentially on the receiving end of a donor gift that you were never anticipating needing.

During DonateLife Week, coming up in August, may I suggest you consider the three-Ds:

• DISCOVER the facts about organ donation – DonateLife.gov.au
• DECIDE whether to go on the Australian Organ Donor Register
• DISCUSS you decision with your family and friends.

A decision to donate life is the ultimate gift. And you never know when someone’s gift may benefit you.

DonateLife Week is 2 – 9 August in Australia.   www.DonateLife.gov.au Twitter – @DonateLifeToday  #DonateLife   #organdonation   #havethechat

What I’ve been doing since February

I walked into The Alfred hospital, Melbourne, in late February (2014) for a routine appointment.

Little did I imagine that I wouldn’t be going home for 10 weeks. Nor that when I did eventually make it home I’d be fitted with a mechanical heart.

Sixteen years earlier

Let me explain. Sixteen years earlier I had a near fatal battle with heart failure. Toxic levels of ferritin (iron) in my body – until then undiagnosed – had attacked and weakened my heart. The damage was due to a genetic condition called Haemochromatosis. Parents may not have the condition yet unbeknown to them they can be carriers and pass the genes to their children.

Fortunately the damage caused to my heart could be controlled for many years by medication. The Haemochromatosis was controlled by regular venesections (blood donations to dilute the iron levels).

All was well until early 2013 when I began to feel tired and breathless. As the year went on I lost close to 10 kilos and found that simple tasks were no longer simple. My heart was deteriorating quickly.

And so after unsuccessful treatments, including several pulmonary vein isolations and the fitting of a pacemaker-defibrillator, my local cardiologist referred me to The Heart Centre at The Alfred. Perhaps there is something they can do for you, I was told.

Sorry, you won’t be going home today

Five minutes into my initial consultation The Alfred hospital’s head heart-failure doctor got up and left the room. He returned to tell me and Kelli, my wife, I wouldn’t be going home today. He had just arranged a bed for me in the cardio ward. Kelli and I looked at each other in disbelief.

They tell me there was an equal amount of equipment at the foot of the bed!        pic: Jude Deague

Over coming weeks I’d spend almost three weeks in the Intensive Care Unit, of which 11 days were spent in a coma. My body, weak and withered from the long term effects of a failing heart, had been fitted with a mechanical heart pump, replacing the function of my left ventricle.

The doctors said later they weren’t sure I’d make it.

Kelli travelled almost daily from Barwon Heads to sit with me, talk to me and hold my hand. Sometimes my step-son Austin was with her. I was off in my weird drug-induced fantasy world and for much of the time didn’t know they were sitting by my side for hours at a time. I still have trouble distinguishing reality from fantasy in my memories of those days. How Kelli managed through those long weeks I still don’t understand. My wife is a strong woman.

Our families, friends and neighbours and my boss and work colleagues have been amazing in their support. A challenging time for Kelli, Austin and I was made much easier thanks to their assistance, understanding and well wishes.

Just over two weeks ago we came home from Melbourne. We love Barwon Heads, but never before has there been greater emotion when pulling into our driveway.

The long road ahead

Today I carry a shoulder bag containing a small computer controlling and monitoring my mechanical heart, together with power packs that must never be disconnected.

The shoulder bag is connected to me 24/7, wired into my torso. I sleep, shower and exercise with the bag. The fragile wire connecting me to the bag is literally my life line. As annoying as the bag can be, it is a long way better than the alternative.

This 2kg set of batteries and stuff goes everywhere I go.

With the help of doctors, nurses and physiotherapists at The Alfred I’m now on a mission to rebuild my body to become strong enough to be considered for the ‘heart transplant list’. The strength to withstand another major operation is a prerequisite to inclusion on the list. So too is passing a host of general health and medical tests. I’m working through those hurdles as Kelli and I travel weekly to The Alfred for medical appointments, physio sessions and check-ups.

Not only has Kelli been my strength through all of this, she is also my chauffeur and home nurse! For the time being I’m not permitted to drive. And the wound made for the wire connecting me to my power pack needs regular dressing. Kelli is my Wonder Woman.

Should I be fortunate enough to make the heart transplant list, and then to receive a heart, I’ll judge that things are really back to normal when I can resume my favourite form of meditation – swimming laps at the local pool.

In the meantime, I’m just counting my blessings to be alive and home with Kelli and Austin.

Backyard blitz

We love our home in Barwon Heads.  We bought it a couple of years ago.

The floor plan was perfect for us and the largish back yard had lots of potential, but it had never been properly landscaped.  Actually, that’s an understatement.

The previous owner had done little more than throw blackened wood chips everywhere.  Depressing to look at and of little use if you want to use the space for social summer occasions.

Our long-term plan is to develop an Asian-style garden.  But as an interim measure we’ve recently had instant turf laid.  A garden shed and a few trees have been added too.  It looks so much better.

It’s a long way from our Asian garden, but they say patience is one of the strengths of people from Asian cultures.  We’ll see how we go in that regard.

So here is our quick ‘before’ and ‘after’ photo story of recent developments in our back yard.  Our own backyard blitz!

Kelli’s brother Chuck assembled the garden shed. Thanks Chuck. Nice job!

Shed finished and holes for trees being dug. Hard hot work digging in limestone and clay!

Izzi and Sam the dogs sussing out the tree holes for potential bone storage.

Next the trees go in. Two taxodiums and an acer nagundo sensation. Mean anything to you?

Then Justin of JL Turf came to clear the wood chips and level the yard for our new lawn. Made it look easy with the ‘Kanga’, but he took away four big loads of chips.

Just like laying carpet. Well, sort of like laying carpet, but this carpet grows and only comes in one colour.

Now that’s starting to look like a backyard.

And this is the final product. Needs lots of water, but it will soon take root and already it has changed our backyard.  Bring on summer.

Bring on the heat

The heat is about to hit.

Apart from a few isolated hot days, summer this year has been mild.  But if the forecast is to be believed we are heading for a couple of hot ones: 36 degrees today and 41 tomorrow.

It’s to be the start of a week of heat.

That should make the hordes of holiday-makers who have descended on Barwon Heads and Ocean Grove happy.  The beaches will be packed with mainly overweight, lily-white ‘city people’.  Or that’s my perception of them.  The “rubber necks”, as we locals refer to them.

Of course it’s their money, injected into the local economy during the short summer period, which keeps many local businesses afloat.

Barwon Heads normally has a population of less than 3000.  At this time of the year it balloons out to more than 10,000.  That inevitably places strains on the infrastructure and services.

Accessing data on the mobile phone networks in Ocean Grove and, to a lesser degree, Barwon Heads is annoyingly slow.  Trying to access a website on the iPhone or iPad more often than not results in a ‘network unavailable’ or ‘timed out’ message.  Phone calls drop out way too often.

Barwon Heads Bridge traffic in summer. The closest we get to a traffic jam!

Traffic congestion is commonplace in the main streets of both centres and across our prized Barwon River bridge, an inability to find a car park and mayhem at the local eateries and cafes, is so very hard to take.  Even though it lasts for only a few weeks of the year.

Little things, you say?  True enough.  But we become spoilt in our little sleepy seaside villages.  We live here to escape the city hurly-burly.  If we want that we head to Melbourne, or the bigger world beyond.

It’s two years since Kel and I moved back to the Surf Coast and already I’ve adopted an insular small-town attitude for which, surprisingly, I don’t feel the least bit apologetic.  Well, that’s how I’m feeling today anyway.

Defiant!

Bring on the heat.

A fresh sea breeze

The year 2010 swept us from Canberra to a new and very much more relaxed life in a small town on the surf coast west of Melbourne in Victoria.

Beach walks, coffee at our favourite cafes and time to catch up with family have been wonderful and welcome.

We had been living away from the coast for too long and, although Canberra is a great place, it isn’t on the coast!

We missed the rhythm of the waves and the smell of salt in the evening air. Now we have all that and more as we settle into our new community with its long surf beaches.

The regiment of Canberra living has been replaced by a friendly informal community where people have time to say ‘hello’ and chat about the weather and the house that sold down the street. The kids ride their bikes to school in safety and people look out for one and other.

Not that Canberra was a bad place to live; it simply had a habit of taking itself too seriously.  Its inhabitants try desperately to keep up with the hurly-burly of demands from the “house on the hill” and to manage the resulting stress.

The amazing thing is our move has reminded us that most people outside Canberra don’t give a stuff about Canberra’s political ‘games’, except when those games impact directly on their wallets, or at election time (and even then they don’t always care).  Canberrans seem oblivious to how unimportant their role is seen.

We loved you Canberra, but can’t say we’re sad to have left.  But we are sad to have left behind many great friends.

Ours is an adventure with new challenges and exciting possibilities. This weekend a long-promised wave ski (pictured) was purchased as part of my get fit program. It’s been too long since I’ve ridden the waves on a ski, but that’s my immediate challenge as we enter a brand spanking new year.

Bring on 2011.