Chapter Four

‘WALKING WITH ANGELS’

I first went on a kidney machine at Royal North Shore Hospital. That was well over twenty years ago but it is something that has stayed with me for the rest of my life. Besides all the discomfort the thing that terrified me most was that I had lost my independence. I could no longer come and go as I pleased. I had always been a bit of a free spirit and I found the restrictions almost unbearable.
I was now dependent on this machine and there was no going back. No machine no life. And so I went to the dialysis ward three times a week. Kidney Disease has never been very high on the government’s agenda when it came to allocating funds. There has always been a chronic shortage of equipment and resources. The actual ward was ‘temporary’ and had been so for as long as I could remember. Here we were a dozen patients crammed into what had been an aisle way and here we stayed for the eight hours that it took to complete the dialysis. You only needed about five hours on the actual machine in those days. It was the litany of things that went wrong that took up the extra time. If ever there were angels on earth they occupied that ward dressed as nurses! And the medical team headed by Dr. Caterson was the last word in dedication. What we needed was one of the politicians to contract kidney disease to get something done!

Like all people caught up in a difficult situation we developed a great camaraderie. To pass the time we played endless jokes on each other. A fellow patient, John Paduano and I would love to use twenty ml. syringes as water pistols. We would call the nurse over to fix something on the machine and as she leant forward to peer at the dials a jet of water would come squirting out hitting her fair and square in the face!
Incredibly John spent nearly thirty years on dialysis. I heard that he had finally received a transplant and that everything is going well.
One of the things you had to watch on the machine was your venous pressure. If this was not right it meant that the blood was not flowing properly. I would wait until John was nodding off to sleep then quietly whisper ‘Watch your venus pressure, John’. He would wake up with a start vowing to do the same to me, which he inevitably did.

I always find it frustrating that there are so many patients on dialysis. Every year during Transplant Week the community talks about it and there is a great flurry of radio interviews and newspaper reports but the problem does not seem to get any better. It is so important to let your family know what your feelings are about organ donation while you are still alive, as ultimately it is your next of kin who will make the decision. We could drastically reduce the numbers waiting for transplants if this could be resolved. Furthermore the cost in medical and social security payments is astronomical. And how do you measure the social consequences?
In my case, for instance, following the transplant I went from being a totally dependant patient to an active member of society. I remarried and had a child and hopefully I have made a positive contribution to the general well being of the community.

And so I settled into a routine from which there seemed no escape. Because I had major problems with my heart as well as my kidneys it did not seem feasible that I could have a kidney transplant and the likelihood of staying alive another five years were very slim indeed. I was living in Coffs Harbour at the time and there were no facilities for dialysis at all. Dr. Caterson asked me if I would like to try having a kidney machine at home and of course I jumped at the chance. It meant going to The Sydney Dialysis Centre at Edgecliffe where you learnt the ropes. The course went for about six weeks and involved having dialysis three times a week and learning how to set the machine up and maintain it as well as learning how to manage medical problems as they popped up. If you have the right temperament I believe that this is by far the best option for long term dialysis as it gives you a lot more independence and you really do get to learn all the ins and outs of the disease. The staff at Edgecliffe were just fabulous from the nurses headed by Sister Elizabeth Sugar to the technicians who maintained the machines when you finally got to go home.

It was at this time that I met Dr. Elliott Savdie who was to have such a huge influence on my life. He was the visiting physician at the Sydney Dialysis Centre and was to become my renal physician over the next twenty years. My debt to this great man is beyond measure. Elliott is one of those rare people who was born to be a doctor. He had and still has that indefinable ability to sniff out trouble long before it occurs and I owe much of my success and the fact that I am still here to his patient attention to detail. 

While at the centre I had a major obstacle to overcome and that was I just could not put the needles into my arm. I had this huge mental block and it was going to destroy any chance of dialyzing at home. By this time I had hundreds of needles inserted by the nurses and I could see no logical reason for my hesitation. The trouble was they were such big needles, twenty two gauge, and they seemed like hose pipes, which in fact they were when it came down to it. Your blood goes into the machine through one called the venous line and returns to your body after the machine has done its work through the second one called the arterial. What was I to do!
One Friday I made up my mind that Monday had to be the day and so I psyched myself up all weekend. I got myself in such a state I was nearly ill. Monday morning came all too soon. Those dreaded needles were laid out before me. This was it! I picked up the venous line, gritted my teeth and slipped it in. Much to my amazement it was lying in the perfect position and the blood began pulsing in the tube. Yippee! I had done it. That was it. I never looked back. In the end I could put them in almost in my sleep and it meant I could start thinking about going home.
If going on dialysis at home was to have any chance of success you had to learn to cope with all the problems that could arise when you were by yourself. This meant learning a series of drills and procedures for situations such as a mechanical breakdown, or for example the water supply being cut off. During the last week at the school you were isolated in a separate room as if you were at home and likely problems were simulated. Pass these tests and you were on your way!

Only patients who have been in hospital for a long time will appreciate what a joy it is to be finally at home no matter how basic that ‘home’ might be. There is nothing like your own bed or the comfort of making a cup of tea in your own kitchen!  My mother and I arrived after an exhausting trip only to find that the dialysis machine was not ready. The next twenty four hours were terrible. Trying to cope with ‘everything’ was beyond belief. We got through it but at a terrible cost, particularly to my mother. And so began my daily routine as a dialysis patient. Living on social security was just awful. Why people opt for this lifestyle when they are capable of working is beyond me. It is a marvellous thing in its place and we are very lucky to have such a generous system in Australia, but the quicker you can get off this debilitating existence the better. There was never enough money for anything. By the time I paid for the bare essentials there was nothing left. From the very outset I was conscious that you had to live life with the kidney machine as a help and not the other way round. All too often the machine takes over and you tend to live for the next session on it. You must remember that you are tied to having dialysis three times a week. This means you cannot venture very far from home. There were simply not enough machines to move around the countryside with any ease.  In real terms it meant I could travel within a day of Coffs Harbour or Sydney where I could use the hospital.

For a break I would travel to Dorrigo about forty kilometers away for ‘holidays’. I knew the area quite well as I had lived at Bellingen for over a year before moving to Coffs Harbour and it was always nice to drop in and see old friends on the way. My heart was detioriating at a great rate and so I started an exercise program which involved walking along the beach every day. Sometimes I never made it and would liberally crawl into the car to return home exhausted. But still I believe this simple exercise kept me going from a psychological point of view and helped me get through those very trying years.

You soon came into contact with people who were having an equally bad time when you lived at ‘Beth Shan’, the Housing Commission estate south of the town.
One of the greatest women I ever met was my next door neighbour a dear old lady by the name of Thelma Hunter. I don’t think I would have made the distance without her loving care and understanding. I had been at Beth Shan, which funnily enough means ‘peace and tranquility’ for about two months, and I had barely said two words to her. She knocked on my door in the middle of a session on the machine with a piping hot meal and that cheerful smile which brought the morning sun back into my life. Sometimes when things are very difficult something will happen that changes everything. This was one of those times.
I found out, as we went along, that she suffered from terrible bouts of depression and that her smile was her way of getting through the day. She told me that she had woken up one morning and had said to herself ‘I must help that man next door”. That was my lucky day I can tell you. Thelma cooked me meals everyday that I was on dialysis over the next four years and even organized other people, in particular Joan Halters my other neighbour, to cook for me when she was away. These two little saints were just wonderful. How could I ever thank them enough!
Thelma had an incredibly hard life. She had married a diary farmer who contracted chronic arthritis only two years after they were married. On top of that he developed diabetes so Thelma had to learn to milk the cows, run the farm and the house with three children and very little money. We became great friends. One terrible day her daughter came to visit with the shocking news that her grandson had committed suicide. Apparently he suffered from the same affliction that had haunted her all her life. I don’t think she ever got over it. Unfortunately both Thelma and Joan passed away about ten years ago. I still miss their company and simple attitude to life.

And then there was Wendy Noel. I never met anyone with such determination to live. When I first met her she had advanced bone cancer. I would never wish this illness on anyone. It is the closest thing to hell on earth. I don’t know how she lived through the pain in those final months. Wendy just loved her flowers and her garden and while she was able, spent many hours decorating the altar at St. Augustine's.
I do believe that people have some choice about when they are going to die and Wendy certainly held on to see her newly born granddaughter. Tragically the baby died of cot death just after Wendy passed away. They were buried in the same coffin and I do pray that they are both walking with the angels and keeping Thelma and Joan company on their journey through eternity.

One day I received a visitor from the local Art Society. Carolyn Gardner wanted to know if I would teach watercolour painting on Saturday mornings. I don’t remember how she found out about me but it was the beginning of a long association. There was very little money in it so I did not have to worry about its affect on my disability pension. In those days you were allowed to earn $40. Its great benefit lay in the fact that I was useful again and had some social contact. The students were wonderful, mainly retiree’s looking for a hobby. We held exhibitions and did regular ‘plein air’ painting sessions at the botanical gardens at Coffs Harbour and other scenic places around the district. We always ended these sessions with a barbecue and the goannas would come out to share our lunch and entertain us with their antics. We used to feed them hard boiled eggs which they would catch in mid air like a dog catching a ball. It was a happy time for me and I always felt that I got a great deal out of the experience. And what a day it was when one of my students, Margaret Gittoes, won the first prize at the Dorrigo Show for her lovely rural landscape!

About this time my cardiologist, Dr. Greg Nelson came up with the idea that I might be suitable for a double transplant, that is a heart and a kidney, and asked me if I was interested. The operation had never been attempted before in Australia so we were treading on new ground. Greg Nelson was great at getting things done, and I shall always be grateful for his adventurous attitude which helped get the whole idea under way. We take much of this technology for granted today but back then it was all new and we were entering uncharted waters. The cogs began to turn and after a long talk with Dr. Peter MacDonald at the transplant clinic at St. Vincents hospital I began a series of tests to find out if I would be suitable. In all it took nearly three years before I went on the waiting list. Nothing is left to chance from the psychological interviews to the dentist making sure your teeth are in perfect condition. I have never met such a dedicated team. In July 1990 I went on the official waiting list. I will devote a whole chapter to this incredible time later on.    

In the meantime I continued to paint almost every day and it was at this time that I developed some of the techniques which were so beneficial to my work later on. I believe that without all the illness I would never have got around to doing the work that is necessary to become a good watercolourist. Coming to terms with your own mortality is one of the great lessons in life. It gives you the will and determination to get things done no matter what stands in the way. Time becomes very valuable as you realise how little of it is left. Even the great Kerrie Packer only got the same allocation as the rest of us!

There is a back road that follows the now defunct railway line up to Dorrigo. It is an artist’s paradise, a land of beautiful gums and the old railway workings are such a great subject to paint. Dorrigo is a charming little town. It is generally accepted that the name came from the local aboriginal meaning ‘stringybark’, although a more romantic notion that it was named after an obscure Spanish General, Don Dorrigo’ still lingers. The countryside is spectacular from its rich open pastures to the rainforest that skirts along the top of the ranges interspersed with cascading waterfalls and great outcrops of rock that make up the escarpment. This was once great cedar country but sadly there are only half a dozen of these magnificent trees left.
In the 1920’s a single railway line was built from Glenreagh to Dorrigo, a distance of seventy???? miles through some of the most difficult terrain that you could imagine. The line did bring some prosperity to the town but always ran at a colossal loss as it was so difficult to maintain with constant landslides and falling trees blocking the track. It finally closed after heavy rain in 1972.

In more recent years several groups have attempted to open a museum and plan to run a tourist train over at least some of the track. The army even did extensive work repairing the line. So far there has been little success due to the enormous cost of getting the project under way and the inevitable politics that goes with such a venture. Here is one of the best collections of steam locomotives and associated paraphernalia you will ever see sitting in the fields just waiting for a museum to happen.

And so it was with this landscape around me that I really got stuck into painting watercolours and to a lesser extent oils. I found the latter cumbersome and although I managed to sell a few of these later on it was the watercolours that were really my forte. One of the great things about watercolour painting is that you can come and go leaving all the materials on hand. If you do not wash the brushes immediately no matter and there are no fumes or dangerous chemicals to content with. I have always thought that this is the medium for busy people, as you can set it all up in a little corner and return to it between other more pressing jobs. I am sure that this is the reason that I have produced so much work over the last twenty years, about four thousand paintings in all.
The local Arts Council also asked me to give a series of lunchtime talks about the history of art which I found rewarding and gave me yet another social outlet. However my health continued to deteriorate. Trips to Royal North Hospital became more frequent and more complicated. Quite often I would be taken by wheel chair from the plane when it arrived in Sydney, and then ambulance to the hospital. It was only a matter of time before I would be unable to dialyze at home which meant moving back to Sydney as there were absolutely no facilities in Coffs Harbour.

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