Quite by accident, in 1997 I found out I had Polycystic Kidney Disease. I was waterskiing on Lake Tarawera, Rotorua, and had a fall. I had severe pain on my left side, and thought my back was broken.
The results from a CT scan revealed Polycystic Kidney Disease. I was 37 years old, with two small children, aged 4 years and 2 years.
My father died aged 45 years old, from a brain haemorrhage. He had high blood pressure. I was 7 years old at the time.
It was a big shock to find out Polycystic Kidney Disease is a genetic condition. On the phone to my brothers, three of them. News to all of us, that we didn’t need, or want. Over time, tests were done. My oldest brother has it, the brother in between, and the youngest brother, doesn’t. 50% chance as the genetics probability predicts, and true for us anyway.
In 1999, I was involved in a serious motor accident. A vehicle crossed the centre line, onto my side of the road. As a result of the collision, I was left with a permanent disability, and mobility issues. This overshadowed the kidney issue for quite a few years, as my kidneys were still functioning okay, till about 2006. Around this time, my kidney function started to deteriorate.
Well, forewarned is forearmed. As time went on, I became a familiar face with the Renal Team at Waikato Hospital, who were amazing throughout my journey.
At that time, my partner Anita asked if she could donate a kidney to me. Martin Wallace was the head of the Renal Department then, and said no. She is a blood type B+, and I am O. We weren’t compatible for a transplant then.
I prepared for dialysis over the next while and, as I was deemed a good candidate for home dialysis, I was trained at Waikato Hospital to enable self-dialysis. So I could still work (I’m a Hydraulics Engineer on heavy machinery and sawmills) and sort the kids out, etc.
Time management and juggling numerous tests, appointments, operations, physiotherapy, travel out of town to Hamilton and Auckland, medication changes, highs and lows of various health problems became all-consuming, and are a blur to me now. Adding to the stress was sleep apnoea and restless leg syndrome. Hard on Anita … it tests a relationship way beyond a box of chocolates and a bottle of wine!
Getting on dialysis early was a challenge, so I wouldn’t finish too late (1am ish normally). Anita would wait up while I removed the needles and stopped the bleeding (she works full time also).
I home dialysed for approximately six years. But, slowly, my health was still declining. So again, we made enquiries about a transplant. I was on the Transplant Waiting List, but Anita asked again whether she could donate a kidney to me.
New developments with incompatible blood types had been successful in Japan, and were becoming another option here in New Zealand.
This was incredible news to us. We were given the ‘okay’ to have Tissue Typing Tests, to see whether these were a match. The news came back, YES!
From this, over some months, many rigorous tests for both of us. Everything was good, and the date was set.
Things were lining up for me, so I went to Auckland mid July to begin a Retuximab Infusion. Then plasmaphoresis to remove white blood cells from my blood prior to the transplant, so I wouldn’t reject the new kidney. Anita was now in Auckland too. Our son’s School Ball was happening, but neither of us could go back to help (the risk of even picking up a cold would postpone the surgery). SO SO grateful to family and friends who stepped in for us.
14th August 2013 - Transplant Day. We were both prepared for surgery, and the operation went ahead. Anita’s kidney worked AMAZING, and was fantastic. My Restless Leg Syndrome disappeared straight away, I felt better immediately.
Eight weeks recovery in Auckland was great. The facilities and daily care and attention given to us both was greatly appreciated, and humbling beyond words.
As I approach our 10 year Transplant Anniversary, it’s time to reflect, and be thankful. I simply wouldn’t be here now without all the outstanding dedication our Renal and Medical Teams in Hamilton and Auckland gave me. I thank them all. I will be forever grateful.
Mark Jones