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Jonah Lomu's attitude towards his battle with kidney disease was an 'inspiration' to people in need of kidney transplants

Three people tell Una Brankin how they were faced with having kidney transplants just like the legendary sports star

Published 24/11/2015

Long wait: William Johnston at his home in Bangor
Long wait: William Johnston at his home in Bangor
(Bottom Left) William Johnston during the 1985 school cup final, Northern Ireland on November 23 (Photo by Kevin Scott )
Gone too soon: New Zealand rugby star Jonah Lomu
Life saver: Lesley McClune
Kay Cliffe with husband Michael

Rugby legend Jonah Lomu, who died suddenly last week aged 40 in what was initially though to be a heart attack, actually passed away as a result of a blood clot brought on by a long haul flight, according to a new report.

The All Blacks player had a history of chronic kidney disease and had a transplant in 2004, which his body rejected in 2011, leaving him requiring dialysis and in need of a second new kidney.

His doctor John Mayhew revealed this week that a clot on a lung following a flight from London to New Zealand was the probable cause, adding: "It's just one of those tragic complications that can occur in people with chronic renal failure."

Despite the rugby winger's tragic death, a report presented to the Northern Ireland Kidney Research Fund's AGM earlier this year by Professor Peter Maxwell has shown the number of people here receiving transplants is increasing, with 98 patients getting a new kidney in 2014, and 55 having a transplant until June this year.

The latest figures indicate there are 184 people in the province awaiting a kidney transplant.

Nevertheless, the number of people waiting for the life-changing surgery has decreased substantially because more transplants are being performed locally, according to the report.

We talk to three people whose lives have been affected by kidney transplants.

'My failing kidneys robbed me of the chance to carry on playing rugby'

Rugby enthusiast William Johnston (49) endured 17 years on dialysis, one of the longest waiting times recorded for a kidney transplant patient in Northern Ireland. A fan of the late rugby legend Jonah Lomu, William eventually received the kidney of an anonymous donor in 2013, which has somehow given him a new appreciation for music, according to his wife Carla (52), a teacher. William says:

I was born with a kidney defect and had an operation when I was two, at Great Ormond Street in 1969. Back then, they'd never done that sort of surgery on someone so small, and they warned my parents that if I came through it, I'd be underweight and might not make it to my teens.

I did, and grew up to be quite stocky, actually. I always loved rugby and played in a team that won the Ulster Schools' Cup. After my A-levels, I went to work in London, in hospitality, and continued playing rugby there.

One day, I had gone to give a pint of blood at work but they couldn't take it. They said I was anaemic and lacking in iron. I was 28; I'd been feeling a wee bit low while I was training and falling behind in races. The others would be running past me, but I thought, maybe, I was overdoing it with the London lifestyle.

But my kidneys were failing and I had to start on dialysis six months later.

I came back to Northern Ireland to wait on a transplant. I had a catheter placed in my stomach and had dialysis at home, three days a week. I'd lie there for four or five hours with needles in my arm, and totally lost my freedom.

I could no longer play rugby, but Jonah Lomu was a real inspiration to me. He had a transplant and his attitude was, if you need dialysis, you have no choice. Get on with it.

You are warned that any foods containing potassium, from bananas to chips and coffee, are very bad for the heart muscle when your kidneys aren't functioning properly.

My diet is very restrictive and I've to keep alcohol to the minimum, and fluids to 700ml a day.

It was very difficult to get a match for my blood type. No-one in my family was compatible.

It was just the luck of the draw that I got one, from an older man in London.

That's all I was told about him, but maybe he was into music; my wife has noticed I listen to it far more now.

The operation lasted six or seven hours and left me weak and sore, but delighted.

I was on the 11th floor of the City Hospital for three and a half weeks.

It really does live up to its name as a Centre of Excellence in Europe. They save lives every day.

I haven't needed dialysis for a year and a half and it has made an amazing difference to my life. I was able to go on holidays to Barcelona without having to factor in dialysis for hours, three times a week.

Rugby was one of the biggest losses - my favourite past-time was taken away.

I'm a bit past it now, but I swim to keep fit, and might even play again, some day.

Jonah Lomu was the greatest ever, in my opinion. He's the only reason I'm talking to you now.

Coincidentally, I was put on dialysis in 1995 on the same day he arrived to play at the World Cup in London (scoring five tries in seven matches).

He never let his illness beat him throughout his life.

Our paths went in different ways. He'll always be one of my heroes.

'Kay and I have never been that close, but she saved my life and I love her so much' 

Gruelling dialysis every other day brought 51-year-old former council worker Kay Cliffe's long-term depression to crisis point, leaving her suicidal. That was until her sister Lesley McClune (54), from Carrickfergus, who volunteers for the Transplant Association, came to her emotional and physical rescue, and, in doing so, forged a loving relationship between the previously distant siblings.

Kay says:

I was born with only one and-a-half kidneys functioning but my parents were told not to worry because it wouldn't affect me. It didn't, until I hit 45 and started to feel really lethargic. I'd fall asleep at my desk or at dinner.

The tests showed I'd only 35% kidney function, which then fell to 11%. I was on dialysis for three years - I really hated it. I'd been suffering from depression all my life and this brought it to a head. I couldn't cope. Lesley came over - I live in Blackpool - and marched into the doctor's office with me, and said 'My sister needs help.' Up until then, they wouldn't listen to me. 'Oh, you'll be fine,' was all I got. It got so extreme, I took an overdose at one point.

Then, Lesley rang up one day and said she'd give me one of her kidneys. Well, we didn't hate each other but we've never been close. My daughter, Romarne said, 'She'll never do it'. Previously my friend had said she would, then let me down and changed her mind so I thought, 'Oh my God, is Lesley really going to do this for me?'

For two people who have never been close, I love her so much - she saved my life. I have part of her inside me now; I stroke it.

I've still got a hernia I'm fed up with, but now I can play with my three loud grandkids and go shopping. I can get the kids showered and make their breakfast in the mornings; stuff you'd take for granted if you've good health. It took me a while for it to sink in and I'd ask myself, 'Am I normal now?'

I take anti-depressants - what a difference they make. I don't get up with a dark cloud hanging over me any more. It used to be I couldn't get out of bed. I'd lie there with the curtains closed. Now, I can't wait to get up and dressed.

Giving me her kidney was so daunting for Lesley but she did it. She's my angel.

Lesley says::

Kay had to have dialysis every other day and didn't cope with it well at all. She'd be making up any excuse not to have it. She had to give up her job at Blackpool Council and Michael, her husband, couldn't work either (he's a car mechanic), as he had to do the dialysis for Kay at home. So it had a devastating effect on their lives financially and put a strain on their marriage.

After Kay's friend got cold feet last year, I got a blood test to see if I was compatible and went to see a consultant at the City Hospital. The team there was absolutely fantastic - they got all the additional tests done in the one day and explained each step along the way. And if I had a low moment, they were always at the end of the phone.

They arranged to have my kidney flown over to Manchester, which was the nearest renal unit to Kay, on Tuesday, October 21, but there was a hurricane the day before and they weren't sure if the plane would be okay. After I was admitted, they kept checking I was all right and assuring me I could change my mind at any stage.

Kay said the same on the phone. She said: 'I'll always love you even if you change your mind; I won't be bothered'.

I did have a wobble and wondered if I was doing the right thing, but I'm fortunate to have a very positive frame of mind. So I went ahead, on the Wednesday. I was in the operating theatre from 9am and back on the ward at 2.30pm, with no pain in the area at all. I've a tiny scar there - but I've done worse to myself with the iron.

I did have what's called a 'gas pain' in my shoulders but that went away when I walked around. I had a slightly uncomfortable night but I wasn't poorly at all the next morning. There were three ladies beside me waiting for operations and I didn't want to take up a bed, so I got home that day.

I still have a perfectly normal life. The consultant did advise me not to put on much weight, because of the strain that puts on all the organs. I had given up smoking (20-30 a day) before the operation and had put on a stone and a half, so that has to go, but my kidney function is almost as it was before. As a donor, I'd go straight to the top of the waiting list if anything did go wrong.

Kay sent me a huge bouquet of flowers on the anniversary of the op in October. Unfortunately, she developed septicaemia from an infection, three days after the transplant, and had a crash team with her for 24 hours.

She opened her eyes at one stage and said 'I think I'm dying', but they got her temperature down and managed to stabilise her.

The whole thing was tough on our mum. She's a 75-year-old widow. She lost dad, who died of chronic heart disease at 42, so the thought that she could lose both, or one, of her daughters was too much for her. We made her stay at home by the phone. My husband, John kept in touch with her all that day.

Mum had offered to give Kay a kidney but she and I both have our dad's blood group, so she couldn't have, even if we'd agreed.

Kay has 32% kidney function now, which is good for a transplant patient. The doctors say that unless she lives to 110, the kidney will last her the rest of her life.

Her happiest ever day was when they took the machines away from her spare room.

She never thought she'd be able to bring her grandchildren to the beach in Blackpool again; now she's enjoying life again and even wants to go back to work. It's fantastic to see her back on her feet again.

Belfast Telegraph

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