By Graham Bradley
I discovered that I had PKD back in 1989 after a four-wheel driving adventure on Fraser Island. The rough terrain managed to give me the warning sign. After a visit to my GP on returning home and a scan, he announced that I had PKD and referred me to the Renal Centre at my large, local hospital. After more checks and visits I was advised that it was likely that I would be on dialysis within 5 years (that would be at age 50). I was referred to the hospital dietitian and received lots of other literature. I was a bit shocked by all this at the time in my life. Could not find any family PKD connections. Anyhow from then on, I visited my hospital kidney specialist regularly, followed all the dietary advice, took up regular personal regular monitoring of my BP and decided that I was going to get on with life to the full but within my constraints. I needed to reduce weight, salt and sugar, exercise more…that was the hard one, eat all the right foods that relate to potassium and phosphorus intake, etc etc.
My wife and I loved to travel, not only in Australia but also overseas. Realising that fairly soon we may be restricted by my PKD we hit the road so to speak, caravanning, camping and a number of overseas trips, all under the guidance of my renal specialist.
The good news was that my kidney function did not decrease anywhere near as rapidly as expected and that life of travelling, family holidays and enjoying dining and holidays with friends (within my dietary constraints) continued on until late last year when I finally had to go onto dialysis.
The point of my story is to follow the dietary and activity advice of your medical people, and provided you can, then get in and do all the things that you want to do right now. In my case the original advice that I would be on dialysis around 1994 stretched out another 23 years beyond that. I was lucky maybe. Now of course even on dialysis you are not completely bound to stay in your own area with the ability to move around to parts of Australia with the kidney buses and you can also arrange visitor dialysis at many locations around our country and overseas. New Zealand is an easy one. Recently the wife and I flew up to Cairns for a week. Had three dialysis sessions in local hospital. No problems at all.
My advice to anyone who has been advised that they have PKD is to get out there and with the advice of your doctor do as many things on your “bucket list” that you can. Don’t mope, be positive. When you’re active doing things you enjoy, there is little time to think about your PKD and your restrictions that may lay ahead and your BP will be in better control if you’re relaxed and enjoying yourself. When people ask you “How are you today” smile and say “good thanks” even if that’s not always the exact truth. In my case I got to do a lot more than I expected and at 73, I am not all finished yet.