ANZAC Week on Desolation Row

This week, Australia and New Zealand celebrated ANZAC Day. For the benefit of foreign readers, ANZAC Day is a commemoration of soldiers who have served our nations in conflict, and in particular suffered mortal or other injury. It originated as a memorial for soldiers who served in the First World War in Turkey and Northern France but now extends more generally to active service in all conflicts.

On Tuesday, Noel was discharged from hospital. The Midnight Cowboy packed his belongings and ambled off into the sunset. He was elated and left us feeling strong and fit. He was well ready to move on from hospital life and had endured a long and difficult wait on the transplant list. All up he had been in hospital for nearly six months. He had experienced the supreme disappointment of three close calls for organs. Two were hearts that were not the right size for him and he was, at the time, not physically well enough to undergo transplant surgery for the third. Close calls like this are not uncommon on the transplant list and fortunately I am yet to experience the tumultuous ecstasy and agony of such an event. Noel put in the hard yards and well deserved the relatively smooth run he was blessed with when the right heart finally became available for him. I will miss his presence on the ward and our days are much quieter without him. The need for a heart transplant has its genesis in many and diverse causes and it is an affliction that will bring together a random group of patients from all walks of life. In many respects, I have had nothing at all in common with any of Noel, Catherine and Mandy, other than our VADs and shared need for a heart transplant. We have all dealt with the situation in our own way. So far as the hospital is concerned, there can be no one-size-fits-all program for the care and management of a VAD/transplant patient. I wish Noel well and look forward to catching up with him when I too have become a former occupant of this place.

Wednesday was ANZAC day and a public holiday. I left the Hospital with ambitious plans. Camilla and I would take the children for a Barbecue in a large and popular water park, to join the Bellbowries and some friends for the afternoon. It was always going to be a challenge for our family to undertake such an expedition with a man and his VAD and an autistic boy who, given previous history, would be likely to be traumatised at the thought of submersion in water. Our more capable companions would be bringing all the gear and food and Julie promised to help with Charlie. We decided that nothing ventured would be nothing gained so it was off to the water park we went, bringing only ourselves, our VADs and two bottles of decent red from the cellar. One was a 2002 Gramps Barossa Shiraz; the other a 2006 Bungawarra Granite Belt Cabernet.

The afternoon was difficult for us. Then again, most things that are easily achieved for a "normal" family are difficult for us at present. The park was ridiculously crowded and the terrain unsuited to pushing a VAD. Charlie freaked when he saw children paddling in the shallow pools and wanted to be as far from the water as possible. Rather than entertain the idea of swings or rides, he just wanted to visit the public toilets, which had long queues of impatient park people. Imogen just wanted to read a book. I felt horrendously disabled and could contribute nothing of practical use to the proceedings. The barbecues were in short supply and frustratingly tepid.  It took forever to render meat dry and grey. It should have been a terrible  afternoon. But it wasn't. Not by any means. Julie took Charlie by the hand and led him around the water park to find things he enjoyed. He found playground equipment he liked. Even a few toilets. Andrew cooked the meat and Erich sprinkled it with lovely South African allspice. Conversation flowed easily. Imogen ditched the book and started talking to the other girls. The wine was excellent.

It's safe and easy to opt out of living because it is just too difficult with a VAD and a child with autism. Things that are easy for most families are difficult and frustrating for us. Nonetheless, the VAD is temporary and life cannot come to a complete halt. The show must go on.

Yesterday, my medical team decided to trial another painkiller regime. I had pushed them to indulge me this little experiment, because I was anxious to get this right before the transplant surgery. We decided to revert to a hit of good old fashioned morphine - tried and tested and excellent for heavy duty pain relief. We added a dose of stematil to mitigate the vertigo and a dose of ondanzitron for nausea.

The result was promising. I got a little vertigo, but nothing like the spinning room sensation I had experienced on other painkillers. I had no nausea. I could easily stand and even mange 15 minutes on the treadmill. I vomited once, copiously and violently, after the second dose. Far from ideal, but manageable. My pharmacist hopes that the vomiting can be managed with maxillon or perhaps my old buddy Dom Perignon. All in all, we now have something we can work with.

Today, Camilla and I got to the movies. This was the first time we had attempted the movies since my confinement. Again, it was ambitious and easily could have been too difficult with a VAD. Again, it proved a very worthwhile experience. We saw Salmon Fishing in the Yemen, a film adapted from a novel written by one of my favourite writers, Paul Torday. It was very good and we both thoroughly enjoyed it. It was easy for us to find good seats, as it was a quiet morning session. The Impaler ticked  and whirred loudly throughout, but we had the crowd behind us and cared little whether the noise may have bothered a few people we didn't know and would never see again.

I am slowly coming to the realisation that even now life is for living and changed circumstances just mean that we carry on a little differently than we did before, or tackle things a little differently to everyone else. There is much merit in just getting on with life until the donor organ arrives. We know not the hour, nor the day. But in the meantime, life is for living.


Until next time,