Father, son recover after kidney surgery

Richie Johnston (29), of Wanaka, is a live kidney donor. He gave one of his organs to his father, Rob Johnston, on November 7.

Now, he is preparing to resume his snowboard instructing career. He talks about his experience with reporter Marjorie Cook.

Every year, about 130 New Zealanders receive a new kidney, with about 50% of the organs provided by live donors - usually sons, daughters, parents, siblings or friends.

Every sympathy is justifiably with the patients who have, in many cases, endured years of kidney disease and uncomfortable, lifestyle cramping dialysis.

But, putting the risk of organ rejection aside, the procedure is usually more of a threat for the live donor, a healthy person who has deliberately made themselves sick so another may heal.

Richie Johnston was told by medical advisers he could take longer to bounce back than his 57-year-old father, Rob, but that hasn't stopped the keen snowboarder and long distance cyclist from doing his best to defy the odds and return to work in Canada this month.

Removing a kidney is usually a straightforward procedure that can be done by keyhole surgery, but in Richie's case, the blood supply to his organ was a bit more complicated and he required an open abdominal procedure, leaving a 25cm scar.

"A few hours later it was put in Dad and he was instantly feeling better ... When I woke up I was so nauseous and throwing up a lot.

"That was just from the pain killers.

"Throwing up with stitches in the abdomen is not the most pleasant thing. But the nurses' support was just incredible," Richie said.

It took a few days for Richie to start feeling "great", although "great" meant taking things very easy, swallowing lots of pain killers.

After four and a-half days in hospital and on a liquid diet, he left Christchurch Hospital weighing 2.5kg lighter than when he went in. He was not sure how much of that weight loss represented the kidney.

Now back in Wanaka to begin preparing for his flight to Canada, Richie has been blogging about his experience to help promote awareness of live kidney donation.

On the day he posted explicit photos from the operation, he got 240 hits, he said.

One of his aims was to inform people about the process, so that anyone who had a similar issue within their family could read a first-hand account of what it was like to donate an organ.

"I have had people asking questions about the process just out of curiosity, what sort of steps to go through, like blood types and tissue type matches. I had a lot of blood tests and a MRI scan," he said.

Despite his urge to get going, Richie is also mindful if he wants to get on that plane, his recovery must be taken seriously, or he could get a hernia.

His tentative start-work date at Whistler Skifield is the middle of this month, and his doctors were "naturally concerned" it was too soon.

Eight days after the operation, the wound was still tender and he still felt "mashed". He was just starting to think about some cruisy, low intensity bike rides, he said.

"It is exciting because I feel so much better than they said I would." With the operation behind them, both men can expect to return to full health.

However Rob, a former beekeeper, must take anti-rejection medication for the rest of his life, amounting to something like 15-20 pills a day.

This was better than receiving dialysis four times a day, Richie said.

Richie had been working in the snow industry for about 10 years, since graduating from Canterbury University with a degree in science and geography.

In the future, he was keen to become more involved in the tourism industry, but for the moment was enjoying his career as a snowboard instructor in Whistler and Wanaka.

Kidney Health New Zealand education manager Carmel Gregan-Ford said the foundation appreciated Richie's efforts to promote kidney transplants ahead of next year's awareness week, from March 8.

"Richie is lucky.

"He is extra fit ... and a great example of how to look after yourself," she said.

With only three transplant units in the country (Auckland, Wellington and Christchurch) and limited kidney resources, some patients were waiting between six months and five years for a transplant, she said.

"There's around 400 people on the waiting list for a kidney alone at least. Probably a bit more," she said.

Because of the wide range of medical tests required, it could take up to a year to obtain a live transplant, and donors were given plenty of time to think through their decision.

"Of the 120 or 130 or so who had the transplant last year, I think about more than 60 were live donors. We are hoping more live donors will come forward. They are our main source [of kidneys] now. I am not sure why not so many deceased donations are happening now - probably because of modern technology, people are not dying and cars are much safer with air bags," Ms Gregan-Ford said.

The main things for donors to consider were keeping a healthy lifestyle and weight, being able to get the time off work to donate, and being mentally prepared for the operation, she said.

Getting time off work was an issue as recovery for a donor could take some time, and could soak up the full annual allocation of annual and sick leave.

Any compensation, generally, came through the sickness benefit.

"We do have issues around this ... It's really a token gesture. It's quite hard. If you have a husband or wife [who is donating] and child care is an issue, or you are not getting the income, it can be hard.

"So we are looking at working with the Government to see it if can increase compensation," Ms Gregan-Ford said.

The mental aspect of donating was important. Donors had to consider how they might feel if their organ failed in another person's body.

"There is always that risk. That's something we always discuss with them prior to the operation, how would they feel if their kidney didn't work," she said.

While some donors felt a real high when the recipient began to recover, others could feel flat or low.

"But, generally, they have the feeling of giving a gift, which is great," she said.

The gift of a better quality of life was also a gift economically, she said.

Not only did an unwell person feel better and be able to contribute more to their families and communities, but each transplant saved the health system tens of thousands of dollars a year in treatment costs for people with diabetes and other kidney diseases.

There were more than 2500 people on dialysis in New Zealand. Symptoms were vague and could indicate myriad other issues.

It had been estimated 3000 more people might not be aware they have kidney disease, Ms Gregan-Ford said.

"Kidney disease is a silent killer. People don't usually realise until they have got 20% capacity left," she said.

 

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Kidney disease

Causes:
• Diabetes.
• Nephritis (also know as glomerulonephritis or Bright's disease).
• Polycystic kidney disease.
• Reflux nephropathy.

Symptoms include:
• Discomfort, burning or blood when passing urine.
• Changes in urination frequency and amount.
• Pain in loin area.
• Swollen ankles.
• Lethargy.
• Lack of concentration.
• Shortness of breath.
• High blood pressure.
• Loss of appetite.
• Nausea and vomiting.
• Pins and needles in fingers and toes.

Costs:
• Dialysis: Between $40,000 and $60,000, per person, per year (depending on type of dialysis required).
• Kidney transplant: about $40,000 in the first year of operation, then $10,000 per person, per year thereafter.

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