“A family is a unit composed not only of children but of men, women, an occasional animal, and the common cold.”   So said Ogden Nash, but in the case of our family, it wasn’t the common cold that plagued us, but Polycystic Kidney Disease.

If you inherit the gene for PKD, you have the disease.  Fortunately, though, an afflicted parent has a pair of genes, only one of which is passed on, so a child has a 50% chance of escaping PKD.  This is exactly the circumstance in our family.  Our father had PKD and passed it on to three of his six children.  Of course, the odds don’t always work out as expected.  Grandma was one of nine children, eight of whom inherited the disease.  Bad luck!

In Grandma’s day, there was nothing that could be done for PKD.  Typically, someone with the gene lived a normal life to middle age when kidney function began to diminish. Grandma died of kidney failure in her fifties.
By the time her son was 40, he had already started to see serious effects of this disease, but for him the future was somewhat brighter with the development of hemodialysis. Dad spent 13 years on dialysis before eventually succumbing to complications at 57.  Dialysis had given him an extra 13 years of life for which he was grateful. And so were we!

Life on dialysis is hard, full of compromises and challenges.  

Dad suffered a lot through those years and suffering inevitably takes a toll on other family members. It’s not easy to watch someone you love suffer. Despite all that PKD took from our mother, she remained Dad’s stalwart support and became (and continues to be) a Kidney Foundation volunteer. Despite all that PKD took from Dad, he maintained an amazingly positive attitude throughout, and never (ok, rarely) lost his sense of humour. His options were, after all, much better than Grandma’s had been.  Mom and Dad were our role models -  when life is unfair you do what you can to make it better.

In an unconventional way, our father is the knot that has tied our family together. The six of us have grown up, moved away, and had our own families. We’ve been a close family despite physical distance, making a point of getting together regularly, and making our sure our children know their cousins. But the gene for PKD has brought ‘family togetherness’ to a new level. The many things we’ve shared over the years have now come to include kidneys. 

As we approached middle age it became evident that three of us were destined to develop PKD. That sounds bad, but on the positive side the other three still had six good kidneys!  Since our father’s time kidney transplant technology and anti-rejection therapies had come a long way, making the decision to share the good kidneys an easy one. That doesn’t mean it wasn’t a bit scary, but faced with the less desirable option of dialysis and/or a long wait for suitable deceased donors, it was a ‘no-brainer’.

So far, our transplant adventure has resulted in two successful surgeries.  As living donors, my sister and I were ready and waiting when the need arose, allowing our siblings to avoid dialysis and the negative effects it can have on overall health. Consequently, they were both relatively healthy going into surgery, which favourably influenced their recoveries. Hopefully, there will be another successful transplant in our family’s future.  My brother is willing to donate his spare kidney to my sister when the time comes. 

There will be a number of hoops to jump, starting with assessing tissue compatibility.  Then he will undergo a battery of medical tests.  There is no point in jeopardizing his health, or in passing something on to our sister, whose immune system will necessarily be suppressed after surgery. 

This phase is the hard part…. the seemingly endless testing, waiting, and worrying that you might not ‘pass’.  It’s quite a relief once all the hurdles are cleared and surgery can go ahead.  The transplant itself is surprisingly easy from the donor’s point of view, with a 2-4 day hospital stay and a recovery time of 6-12 weeks.  My sister summed it up: “It’s amazing that something that was just a temporary inconvenience in my life could have such a profound and lasting effect on someone else … I wish we could have done the same for Dad.”