This (hereditary) life

It wasn’t until the day my father-in-law died that he spoke with my husband Michael about inherited disease.

Michael got on with life and raced the genetic ticking time bomb. Picture: Getty Images

I grew up in a country home where our father’s surgery took up a quarter. The big room where we played and ate shared a wall with the surgery and had a large window where the curtain flickered. Occasionally there was a loud rapping to tell us to keep the noise down.

Patients came first. Inevitably they up-ended plans and terminated family days with accidents, emergencies, illness and tragedy. I had yet to learn about inherited disease.

I can’t recall first meeting my father-in-law, Otto; he just slid quietly into my life. Soon after, tests revealed he had kidney disease. Coincidently, he told us, the cause of death for his father had been listed as kidney disease, and perhaps it was why his grandmother had died young too. When Otto was diagnosed with polycystic kidney disease, it clarified the family story — but it didn’t end there. It wasn’t until the day he died that Otto spoke with my husband, Michael, about inheritance and PKD. Sitting in the afternoon sun at the hospice, listening to a string quartet, he struggled to ask, “You’ve got this bloody thing too, haven’t you?”

Silence, for 18 years is its own story and I’ve learned, common in families with this disease.

Michael got on with life and raced the ticking time bomb to push dialysis as far into the future as he could. Inevitably, when overloaded with symptoms of kidney failure, he began dialysis. A corner of our bedroom was designated a sterile spot, plumbing was installed, a recliner was sourced and the machine was moved in. Three haemodialysis sessions a week; Monday after work until 1am, Thursday and Saturday afternoons allowed him to keep working. As a doctor himself, Michael was a conscientious patient. And father. And husband.

Dialysis turned out to be quality family time, with bodies sprawled across our bed eating dinner, taking advantage of their father’s undivided attention to get homework help or just chat and chill. I’d wonder if the smears on my pillowcase were tomato sauce or blood.

When my husband died, I realised for the first time in my life I was no longer sharing my home with a surgery or a doctor. It felt strange, one loss on top of another, and I began to wonder about what was being done to find a cure for this condition that affects 6000 other Australian families.

I had to consider my attitude to PKD when a researcher asked if I hated this disease. My daughter pointed out I married the disease and, as all of our four children are affected, there is no comfortable place for me to hide. No one wants to be the pin-up for PKD, or to be defined by it. We all want a cure. I feel an urge to bang on the walls of surgeries all over the country. I have to have hope this is not where my story ends.

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