John Hanlon, who shot to fame in the 70s with a string of hit songs, at home with the dialysis equipment that keeps him alive. Photo / Michael Craig
John Hanlon, who shot to fame in the 70s with a string of hit songs, at home with the dialysis equipment that keeps him alive. Photo / Michael Craig
One of New Zealand's most successful but largely forgotten songwriters is battling a rare and potentially terminal kidney disease.
John Hanlon, who had a series of hits in the 70s has polycystic kidney disease (PKD), an inherited disorder that causes clusters of cysts to develop in the kidneys. The cystscan grow large and over time lead to kidney failure.
For Hanlon, whose hits include Damn the Dam, Lovely Lady and Higher Trails, the disease is advanced and his life now depends on several hours of dialysis every second day.
"It has brought me to a shuddering standstill," says Hanlon. "You can't get away for more than 24 hours. My poor wife, Yana, has not seen New Zealand. She's had to rely on rumours that it's a beautiful place."
Hanlon hadn't realised in 2015 when he married Yana, a Russian-born classical violinist, whose career is based in Barcelona, "that it would strike me down quite as it has".
"It's a life-support machine," he says, and he is grateful to the health system for having it.
He was in his 40s when his mother, Daisy, was diagnosed with the disease. He was subsequently found to have it too. "So I always knew that at some point my kidneys would fail, and that time came."
The chance of his mother passing on the defective gene were 50/50, and Hanlon, one of two children, got it.
His hope is to get a new kidney but, he says, that's what everyone in his situation wants.
He is on the waiting list for a donor which, in all but a few cases a year, is someone who has died. Family consent is required even when a person has indicated on their driver's licence that they want to donate.
"I'm in a queue with at least 500 people at any time. To be cynical, I'm in the great organ Lotto."
Though the number of live donor transplants is increasing and accounts for a little under half of all kidney transplants, New Zealand's rate of organ donation is low compared to most OECD countries.
On average over the past five years, there were 59 deceased organ transplants, according to Organ Donation NZ.
The Organ Donors and Related Matters Bill, now before the health select committee, seeks to increase the rate of deceased donors. The bill would see the New Zealand Blood Service take on the role of a national organ donation service and introduce new payments for some donors, for example those who have to take time off work for surgery.
Hanlon says four or five people have offered him a kidney, including his wife, but they were not suitable for one reason or another.
He says younger people with dependents should have priority when organs from deceased people come up.
John Hanlon has polycystic kidney disease which has led to kidney failure. Photo / Michael Craig
"I will be 70 next month. I need to find my own donor and it has to be someone in New Zealand.
"It's the Jonah Lomu factor. Jonah had many people offering him kidneys because he was Jonah Lomu."
Hanlon understood he would be required by medical authorities to know a voluntary donor for at least six months. "I think the best hope is that someone suitable and willing will hear about this and we will form a fast friendship."
Other than a small priority given to children, age is not a factor in ranking those on the waiting list for a transplant, says Dr Ian Dittmer, medical director of the NZ Kidney Allocation Scheme.
In an algorithm, those needing more than one organ are given priority, followed by the length of time they have been waiting.
The average waiting time is four years. "We don't have enough kidneys," says Dittmer.
Though what is deemed acceptable has changed over time, in New Zealand and most Western countries live donors are required to be from family or friends. "We don't do them in general where the donor has no relationship with the person," says Dittmer.
Decisions on what is an acceptable relationship come about from group discussion. "If you had played tennis with someone for 20 years, that would be a relationship but someone you met at the pub last week wouldn't be a relationship and there is obviously a spectrum in between."
Dittmer says authorities are not keen on people campaigning to find donors because of where that may lead, such as payment. He acknowledges, however, that if someone was removed from the deceased organ waiting list because they found their own live donor, that benefited everybody.
Life expectancy on dialysis varies from an average of five to 10 years up to 20 or more.
By comparison, a year after a transplant operation, nine out of 10 kidneys work well, according to Kidney Health NZ. Most of these continue to work well for eight to 10 years and some continue to do so for two decades.
Musician John Hanlon had a string of hits in the 1970s. Photo / New Zealand Listener
Hanlon, who calls himself "an accidental pop star", walked away from the limelight for a career in advertising, but continued to write songs and says he has 60 or so he'd like to record.
The three-time winner of Songwriter of the Year spends his time writing - short stories, poetry and songs - painting and playing golf and says if he was free of the need for dialysis he would go back on the road again.
"I'd do a least one tour a year, playing old and new songs, me and my guitar, and show my wife the country."
Polycystic kidney disease
• An inherited disorder in which clusters of fluid-filled cysts develop, causing kidneys to enlarge and in some instances fail.
• It is the most common inherited kidney condition, affecting one or two in every 1000 people.
• There is a 50 per cent chance of the offspring of a person with the disorder inheriting it.
• Symptoms usually arise in mid life.
Donor data
• 550 - people waiting for an organ or tissue transplant.
• 59 - deceased donors each year on average for the past five years.
• NZ's donorship rate is low compared to other OECD countries.
• The Human Tissue Act (2008) requires consent from family before organs or tissue may be removed from a deceased person for transplantation.
• Live donor transplants make up 45% of all kidney transplants.
Sources: Ministry of Health, Organ Donation NZ, Live kidney donation: managing the 'tyranny of the gift' in NZ Medical Journal.
