My dear old Dad passed away in 1977. He had been paying a visit to me and my family in Townsville all the way from London. Dad had seemingly always been somehing of a finicky eater, always fussy about what he ate. In fact Mum always said that he never ate enough to keep a rabbit going!

Not long after arrival, he started to feel really unwell and looked less than his chipper self. The local GP suggested various tests and it was obvious that he was not getting better and so it was decided that he should return to England for immediate hospitalisation. Leaving my wife and two pre-teen children, I accompanied him back to London where he entered a local hospital. Just a week later he passed away.

After making all the arrangements, I returned to Australia into the bosom of my family. Around this time I started to suffer severe back pain which was put down to my over activity with the various sports that a 34 year-old enjoyed – Cricket, Rugby and even snooker!

The discomfort became fairly acute and my wife insisted that I visit our local GP, the same man that had seen Dad. He asked after Dad and when I told him that Dad had passed away, he asked for the cause of death. A swift letter to the London revealed that he had passed away from chronic renal failure caused by untreated Polycystic Kidney Disease! The Doctor then referred me to a Renal Physician who explained the nature of the disease, especially that it was an inherited condition which caused cysts to grown on the kidneys. Over a period of many years there was a possibility that the cysts would grow and that IN SOME CASES could cause kidney failure. Not what I really wanted to hear!

He ordered various tests to check the level of my condition an confirmed that I did indeed have PKD. My initial feelings were of despair, as I had only recently seen the affects on my Father. He then advised that should the condition deteriorate, I could have at least 15 years before any significant effects would be evident. That’s the bad news!

Over the next few years, my wife and I began to research the condition, visiting libraries and writing away for articles. This was all prior to the wonders of the Internet! After all this careful reading it became evident that the best thing I could do was to get on with life and whilst always keeping my condition in mind, I should jet get on with my life. I was 34 years of age and in a reasonably fit state. I had a loving and wonderful wife, two children and a settled life style.

For the next several years, apart from a move to Sydney and a change of jobs, life was very full and entirely enjoyable. The occasional blip with an aching back and the infrequent passing of a little blood in the urine was just something to put up with. A little frightening at first but nothing much in the scheme of things.

I was working in the travel industry and was travelling to most parts of Australia and around the world with little or no problems. I visited my Renal Physician in Sydney every six months or so and had all the necessary blood tests and it wasn’t until the late 80’s that I started to have a few problems. I started to run out of puff and unthinking people would comment on how “gaunt” I was starting to look!

In the early part of 1990 it was decided that the conditioned has worsened to the stage that I was likely to be a candidate for Dialysis within 12 months or so. I was admitted to hospital the have a minor procedure involving the creation of a fistula in my left forearm. This was part of the preparation for the Haemodialysis option that I had chosen. My working lifestyle just did not suit the Peritoneal Dialysis option.

A sudden visit back to England to be with my Mother during her final days, interrupted the scheduled commencement of treatment and so it was a pretty sick person, both physically and emotionally, that commenced dialysis the day after my return from England.
The beneficial effects on me were not overnight as we did have some early problems with the fistula, but once this was sorted out and a new one created, it was all steam ahead! Within a few days I was starting to feel so much better as the dialysis kicked in and my failed kidneys were by-passed.

This early treatment was undertaken at St Vincent’s Dialysis Unit in Sydney and I was very soon able to recommence work on a part-time basis.
My family was totally supportive in so many ways which made it possible for me to just concentrate on the task at hand. My first objective was to take up the option of Home Dialysis. This meant a six week course of both treatment and study at the Sydney Dialysis Centre at “Duntrim” in Sydney’s eastern suburbs. The staff were simply amazing. They had masses of compassion but preferred to concentrate on the task at hand - make their patients (clients) independent of the hospital dialysis system and able to more or less look after themselves, with the help of their respective partner.
We happened to have a spare bedroom which was instantly converted into my personal “Dialysis Den”. Up came the carpet, down went the lino and in went my very own lifesaving Dialysis Unit together with a tonne of back-up medical supplies.

It took so little time to get into a pattern. I began full-time work by receiving the thrice weekly treatments during the evening. With the invaluable help of my devoted wife Margaret, I continued along this path until the next significant event in my life which occurred just three years later. My Transplant! But more of that perhaps in a later issue!

PKD is a disease that is affects those who suffer from it in so many ways. Many people will go through life with little or no significant problems other than a regular check-up and perhaps the assistance of medication. At the other end of the scale is the person who has to under go many operations and possibly, ultimately, dialysis with the possibility of a life changing transplant, sometime down the track.
My only sincere regret is one that I’m sure my Dad would have shared. My daughter has inherited disease. She is currently 30 years of age, has a loving husband and two of the very best children in the world (but that’s only my unbiaised opinion). My son (who by the way has the other two very best children in the world) is free from the disease.

What of the future? We can only take it one day at a time. Although PKD has and is having a profound effect on the life of myself and my family, it has not all been negative. Some of the best things that have happened to me, have happened BECAUSE I have had health problems. There is not enough space or time to write about it here, but as a 59 year-old, middle-aged grandfather of four who has come through a lot of what PKD can throw at you, plus heart by-pass surgery and more recently Prostate Cancer, I am still in full-time work and still hopefully contributing to society.

Genei technology is coming on apace and, God willing, in not too many years down the track there will be no need for people like me to write articles like this. Just remember that like Cancer, PKD is just a title. It’s not a death sentence. It may have some substantial life-changing effects on you and your family but with the right approach, you can get through it.

David Ridoutt