‘He simply said, have my kidney. He was my best friend – now he’s my hero’
Live organ donation saved Holly Cocker’s life – and it also inspired her to photograph other donors and recipients. Elizabeth Udall tells their stories
Tuesday 04 May 2010
Holly Cocker was in her early 20s when she began to wonder how much longer she had to live. “I had been diagnosed with end-stage renal failure in 2003 and when neither my parents nor my brothers were found to be suitable donors I joined the UK transplant list. But after five years waiting for a kidney I was very sick indeed. Three nights a week, including every one of my Friday nights, I would be in hospital on dialysis. But to be honest I was too tired to go out anyway. I felt I was missing out on so much. I began to wonder, ‘How long can I carry on doing this for?’ Then as I got weaker and weaker it became so hard for me to even imagine a future with me in it that in the end the wondering became one thought, ‘How long can this go on?’
“It was at this point that I confided in Oli, my oldest friend. We had lived next door to each other as kids, playing out together after school, and we had stayed in touch, meeting up as often as we could. But Oli had been away travelling so I hadn’t had a chance to talk to him properly for a long time. I could not believe what an enormous relief it was to have him listen as I told him everything I felt and what I now faced. He didn’t make it into a big deal. He was just really nice and normal, like always. Then he said simply, ‘I’ll give you my kidney’. I immediately told him, ‘No, no, no.’ But he travelled all the way from Leeds, where he lives, to London for testing anyway – and turned out to be the best match ever.”
Only six weeks later the transplant surgery was declared a complete success. Holly’s mum looked after her daughter and Oli at their house after the operation and he remains close to both her parents. “They told him he will always have a bedroom there whenever he needs it and said it feels as if they have gained another son.”
Holly describes Oli Foggins, who’s now 28 and a computer programmer, as “a real hero. What he did inspired me”. That inspiration became “Give and Let Live”, the 25-year-old photographer and short film maker’s collection of images exploring the relationship between kidney donors and their recipients. “When I travelled round to meet up with everyone and take their photo there was never a moment of awkwardness. The fact that we had been through the same thing somehow made it seem as if we were old friends. It is hard to put into words, but I instantly felt and understood the connection between the people in every couple I met. The attachment Oli and I have is incredible, amazing. It is like nothing else. He saved me.”
Shazia Khan and Perveen Akhtar
It was a decision any parent would dread. Perveen Akhtar was the sole donor match and could donate only one of her kidneys – but two of her five children were suffering from chronic kidney failure. Her son Imran, her youngest child and then only 15, was diagnosed in 2003, her daughter and eldest child Shazia around 18 months later, when she was 24. But while Imran was coping on medication, Shazia’s kidney function declined rapidly within four months of diagnosis. “I really didn’t have time to think about my decision in depth,” Perveen explains. “I just saw that my daughter needed a kidney and knew I could survive on one. Of course I thought about Imran but his life was not hanging in the balance.”
Shazia, 29, who is a law student in London, says she had always been close to her father Basharat, who had been devastated when heart problems prevented him from donating his kidney. “Whereas my dad always spoiled me it would be my mum putting her foot down. She took charge of arranging a marriage for me with a Pakistani man when I was 20, which ended in annulment four years later. Although I knew my mum was only fulfilling cultural family expectations, I felt so bitter towards her.” But a little over a year later, when Shazia became ill, it was Perveen, 49, who went with her daughter to every hospital appointment. “When doctors told us that if Shazia did not go on dialysis she would die, I put my own shock aside because my daughter needed me. She was in denial, refusing to have dialysis. I had to help her accept how ill she was.”
Shazia even resisted her mum’s offer to donate her kidney. “I said it wasn’t fair. But she told me Imran would be fine. ‘I gave you life once,’ she said, ‘I’ll give it to you again.’ Her being prepared to do such a selfless thing helped me see everything else between us in a completely different light.”
The months on dialysis before the surgery were hard. “Shazia would be on the machine overnight and would cry out in pain,” says Perveen. “I’d rush into her room just like I did when she cried in the night as a baby. I just wished I could take the pain away.” The surgery in December 2007 was a complete success but as Perveen and Shazia recovered, Imran’s health went into decline. And the significant lack of ethnic donors in the UK meant the odds of finding a match were not good. “My guilt came flooding back,” says Shazia. “But my mum told me to have faith.” And sure enough, in October 2008 a match was found. “It was amazing,” says Shazia.
Soon after their recovery, Perveen encouraged her daughter, who already has two degrees, to follow her dream of becoming a barrister and to return to University. “I am so proud of Shazia, so grateful that she and Imran have been given a new lease of life and so pleased that Shazia and I have found closeness.” Shazia now speaks to her mum on the phone daily and visits every weekend. “I can talk to her about anything and to have her encouraging my career and supporting me emotionally means so much. This is the relationship I always wanted for us. I am so happy that at last we have it.”
Paul and Rebekah Wagnell
Paul Wagnell describes the wait after testing to find out whether or not he could donate a kidney to his younger daughter as “the hardest three weeks of my life.”
Rebekah had been born with chronic renal failure but after initially responding well to medication, at Rebekah’s health deteriorated rapidly when she was nine. “We had always known Rebekah would need a transplant but suddenly a date for surgery was not only being proposed, it was being brought forward – and it was down to me whether it could go ahead. Our daughter was going downhill fast. She was taking 23 tablets every day and still she was vomiting all the time, barely eating and spending half her time in bed, she was so exhausted. “
Rebekah recalls that time vividly. “I just wanted to be normal like all my friends, but I was getting more ill as each day passed.” When the hospital called to say the surgery could go ahead, the relief, says Paul, was “unbelievable”. The surgery date was set for 27 June 2006. “Rebekah may have only just turned 10 but she knew the risks, that people die during donor surgery and organs can be rejected. We were strong for each other. I’d grit my teeth and say, Let’s go for it. And she would laugh and grit her teeth back at me in agreement.”
On the morning of the transplant Rebekah and her dad went to different hospitals. “It was so hard saying goodbye. I was really worried about dad.” Paul had spent time in a friend’s recording studio making a CD for his daughter to listen to, a mix of favourite songs and him talking. “It was my way of being there with her.” This meant a lot to Rebekah. “It was the fact he had done it himself, for me.”
When Rebekah woke from surgery she immediately felt a heavy weight to the side of her stomach. “Apparently she told my wife Tina, Daddy’s kidney is too big,” Paul laughs. But Rebekah soon got used to the feeling and enjoyed listening to her CD with her dad telling her how proud he was of her, how he was sure his kidney was settling in well and he would be seeing her very soon.
Despite the surgery’s success, at first Paul found it hard to look forward. “You’ve spent so long coping with this intense present. I’d look at Rebekah and it would hit me hard, what we had been through. Then very slowly, life becomes normal. But this bond between Rebekah and I, that never goes.”
“I have friends on dialysis who are still waiting,” Rebekah says. “But my dad gave me this wonderful gift. He will always be very special to me.”
Sue Sandeman and Sarah Illic
Sarah Illic was so traumatised by transplant surgery she needed counselling. “I had the most awful nightmares,” she admits. Sarah, 54, had been told she needed a transplant when the lupus with which she had been suffering for more than 10 years progressed to her kidneys. “Two friends volunteered to donate and one, Sue, was a match. We have known each other for 25 years. Our children had grown up together.”
But when Sarah’s aunt Angela also offered to donate she decided she should go for the family option. Unfortunately, serious complications with the transplant surgery in January 2004 meant the donated kidney had to be removed within a week. “I thought we were going to lose Sarah. I was devastated,” says Sue, 53.
It took a year before Sarah, who lives in London with husband Nenad and daughter Zara, 200, was fully recovered physically but she continued to struggle with the emotional aftermath. “I braved the transplant list again in 2006 but then over the next year went through several false alarms, with kidneys found to have abnormalities and so on. The desperate hope and then the crushing disappointment, on top of what had happened before and the fact I was now going through dialysis as well … I suffered terribly.”
Sue, who lives in London with her son Toby, 20, renewed her offer to donate her kidney. “I said, ‘What are we waiting for? I don’t want you to die.’” Sarah remembers shedding tears of appreciation. “We have been through so much together and Sue’s always been there for me. But I just wasn’t ready.” Sue continued to, as she puts it, “bully and cajole. I told Sarah, ‘My kidney will work in you. I don’t drink, I don’t smoke, you’ll be getting the best! Trouble is I never know when to shut up and I sometimes upset Sarah with my persistence.” But in 2009 it paid off when Sarah finally agreed to go ahead.
“When I came round from the operation, the doctors were beaming ear to ear,” she says. “Sue’s kidney had taken brilliantly. I couldn’t turn my head because |of the tube in my neck but Sue was in |the bed next to me and I could see out of the corner of my eye that she had her thumb up.”
Sarah is immensely grateful to the renal staff at Hammersmith Hospital and says she still can’t quite get her head round the freedom she now has. “And I have a future to look forward to. However many times I say thank you to Sue, it could never come close to matching the gratitude I feel.”
Typically, Sue shrugs off her donation. “I had a spare. What I am thrilled with is seeing Sarah’s life now. It’s wonderful to have been able to play a part in that.”
To find out more about blood and organ donation go to www.nhsbt.nhs.uk or call 01923 486800 For details of Give and Let Live, go to www.giveandletlive.co.uk or call the Donor Helpline on 0300 123 23 23.
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