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Allan’s Story

Where did you grow up?

I was born in Crookwell, a town near Goulburn, NSW. Growing up, I lived in many towns around NSW, and after school I joined the railways and continued to move around. Anywhere from Kapooka to Singleton to Broken Hill.

How did you end up in New Zealand?

A lady.. (Allan’s wife Sue appears on screen to clarify “It wasn’t me though!”)

A lady took me across to New Zealand – it was a case of catch and release. But then I met my wife. She wanted a tequila sunrise. I offered her some tequila, and said let’s go and find the sunrise. Five weeks later she proposed. It was the best offer I’d had that night so I accepted! As they say, the rest is history – this was 47 years ago.


What are you currently enjoying watching/reading?

Being the winter season, the NRL and AFL.

I’m reading a Michael Connelly book called “Lincoln Lawyer” which is also a current show on Netflix.


When did you receive your PKD diagnosis?

I was not diagnosed for a long time.

1990 – my first bout was “kidney stones’” I thought it was the bed I was lying on in the Army barracks! I was given a hot water bottle.

1996 – I was peeing black, and thought it was the beer I was drinking because it was dark! I was told it was renal colic, and that “it will pass”. Later that year, I was taken to hospital, and again was told it was renal colic, and that “it will pass.” Finally, a radiologist identified my kidneys as polycystic. I spent six days in hospital in awful pain. I was 45 years old at this time.

2016 – An AV fistula was put in my arm in anticipation of dialysis.

2017 – Things were getting tough physically. I stopped my work and started taxi driving

2018 – I was offered PD (peritoneal dialysis) or HD (haemodialysis). I thought PD might suit me better as I could do my changes in between work shifts. However, after five weeks of PD I went in due to trouble breathing. My kidneys were too large, and I had a hole in my diaphragm which was filling up my lungs with fluid. So, my first HD was the next morning in the hospital.

2020 – In the middle of COVID, I received a phone call to offer me a transplant, but had to navigate travel restrictions to get to Christchurch, while completing dialysis. Then I was told that after the final tests, the results were inconclusive, and transplant could not go ahead.

Six weeks later, on a Sunday night, I was called and offered another one. Planes were back by then, so I flew out the next day and was on the table by 6:00 pm that night.

I didn’t know how bad I was until I felt good for the first time in a long time.

Now I’m back into golf, and it’s all good!


How did you find out about PKD Australia?

I connected with PKD Australia through AKTN (Australasian Kidney Trials Network).


Why are you passionate about advocacy?

I’m involved with trials and committees to be a voice. I want to stand up and pass the word around so that clinicians look deeper. If you’re told it’s kidney stones, find out why. I want to help get people on the right course for their lifestyle. Stretch out the time before going on dialysis.

What frustrates you most about living with a rare disease?

It’s not spoken about. I never knew PKD was in the family until after my father had passed away. And the frustration of junior doctors not identifying PKD due to lack of knowledge. Saying “it will pass” is not an option.


What inspires you most about those you have connected with who also have PKD?

Everyone is heading in the same direction, but we come at it from different places, so we can all help one another. We all got here differently, so the sharing of our journey is important. Remembering that “someone mentioned something about that” may very well be the reason a person steps up to advocate for themselves.


Is there a message you would like to share with our community?

Know your body, and act on the signs it is giving you. If you’re not happy with the doctor, ask questions. The more understanding you get, the better.



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