Shivonne Houston

Day 15

Day 8 - 22kms down, 38 to go!

I didn't think much of it when my Dad first told me he had been diagnosed with kidney disease late last year. He was nervous about what it meant, and his specialist had mentioned he might need dialysis in a few years, but other than that we didn't know much else and stuck it in the "to be thought about another day" box. Life was busy, consumed with caring for my mother who has late stage Alzheimer's. Dad was her full-time carer, whilst I coordinated their supports and nursing staff. We just didn't have the bandwidth to deal with anything that wasn't a pressing problem today.

Fast forward a few months later and it became clear Dad's kidney function was dropping quickly, blood tests revealed he had about 15% left and was now in Stage 5 renal failure. Dad's Specialist and Kidney Health Australia were great resources, with factual, clear and unbiased information to help us assess his treatment options. I learnt quickly that you can lose up to 90% of your kidney function without showing symptoms, often resulting in delayed diagnosis. And whilst there are things you can try and do to slow chronic kidney decline, once function is lost you can't regain it.

I remember being surprised by the impacts of dialysis. Learning that Dad would need surgery to prepare for treatment - to install an access port known as a fistula in his arm, which would then need time to heal.  The time it would take for him to complete treatment (5+ hours, 3 times a week minimum), not counting the time travelling to and from hospital. The needles used to draw blood and push it through the machine to be filtered and cleaned, and then pushed back into his body. The side effects (nausea, fatigue, muscle cramps, cold, pain and many others) and potential complications. The careful attention to diet and fluid intake, to balance the loss of the kidney's capacity to filter waste.

But then also the alternative, that without dialysis to take over the functioning of the kidneys, the alternative was death, as the toxins that the kidneys filter and remove would build up in his body, place strain on his organs and eventually kill him. Given his age and overall health, he wasn't a candidate for kidney transplant. Statistically, even with dialysis, it was likely he would die of other age related complications in the next few years, whilst spending a significant portion of the time he had remaining in hospitals receiving treatment.

Ultimately my Dad chose to not to have dialysis and to enjoy the time he had left with my Mum. Maybe if he was 10 years younger, or if my mother didn't have Alzheimers, he might have made a different decision. Since then I have heard countless stories of young, healthy people diagnosed with kidney disease. Undergoing dialysis, and doing everything they can to try and manage the impacts. More research is vital to find alternative treatments and raise awareness.

Note: I've talked mostly about the impacts of in centre haemodialysis, because that was the main option Dad and I considered. There is also peritoneal dialysis and home dialysis. For various reasons those types of dialysis were not suitable options for my Dad, and I know less about them so haven't touched on them here. 

Day 1!