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!

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.

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.

About WordBiz

Following the worlds of journalism, photography, politics and international affairs from coastal Victoria, Australia.
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