Laurence and Tina

For the first time, the British Transplant Games – one of the largest multi-sport events in the UK – is being held in Medway this summer.
Six hundred patients, including many from Kent and Medway, having had lifesaving transplants will compete in track and field events, such as running, the high jump and a mini-marathon.
The event, held between 23-26 August at Medway Park, Gillingham, highlights the importance of the Organ Donor Register. It is staged by Medway Council on behalf of Transplant Sport UK.
The Games give transplant patients a focus to regain fitness, meet friends made through treatment, share stories and increase public awareness about the value of organ donation and what a difference a transplant can make.
Members of the public can turn up and watch the games for free in Medway Park, although there may be a charge for events held in the leisure centre.
Dr Robert Stewart, Co-Medical Director, NHS Kent and Medway said: “The main aim of the Games is to raise awareness about the NHS Organ Donor Register. There are 239 people in Kent and Medway waiting for an organ transplant. Those people and their families are waiting for a call from the hospital to tell them a donor has been found.
“Sadly, the gap between the number of organs available and the number of people who need a transplant is getting wider. If you’ve been thinking about carrying a donor card, just add your name to the register online and tell your loved ones about your wishes. Around 618,000 people in Kent and Medway are donor card carriers.
“One donor can save the lives of several people. Between April 2010 and March 2011, 3,740 organ transplants were carried out in the UK thanks to 2,044 donors. Organs are often donated by living donors, who give an organ to a loved one. They are also donated by strangers motivated by the desire to help those in need and families who make the incredibly difficult decision to donate a loved one’s organs in the midst of their grief.”
To join the NHS Organ Donor Register call 0300 123 23 23 or visit, organdonation.nhs.uk for more information.
Donor recipients, organ donors and local athletes taking part in the Games share their stories below:
Laurence Sandum, 52, from Deansway Avenue, Canterbury, was in his thirties when he was worried he might be anaemic and went to his doctor.
Tests revealed his kidneys were only working at 50 per cent and Laurence was diagnosed with renal failure.
Laurence said: “It was such a shock as I was so young at the time. The diagnosis came out of the blue and meant a complete change in lifestyle.
“I was put on a special diet to control the renal failure, but my condition worsened in 1998 and I was told I needed dialysis. I was lucky that I was allowed CAPD dialysis, as this meant I could do it myself three times a day.”
At the time, Laurence had a full time job as a clinical technician at Kent and Canterbury Hospital. He said: “I would cycle into work with my bags of dialysis fluid. I would insert a line from the fluid bags into my stomach. The fluid entered my body and filtered the toxins, doing the job my kidneys could no longer do very well. I would do this three times a day.
“As soon as my kidneys worsened, I was on the list for a kidney transplant. After a year, the call came that an organ had been found for me. I went to the hospital and, after many tests, I was ready for the operation.
“When I came around from the transplant, it was a bittersweet moment. While I had been given a new lease of life and my two daughters, who were 10 and seven at the time, had their dad back, I knew a terrible price had been paid. I felt so sad that somewhere, a family was grieving for their loved one.
“I know the organ donor’s family called the hospital to see if the transplant had been a success. They were told it was and that it was given to a young man who had two young children. I can’t express how grateful I am for their courageous and difficult decision.”
Four months after the operation, Laurence was back playing football. A year after his transplant, he went to his first British Transplant Games in Newcastle. He came home with a bronze medal for cycling and has now won many gold and silver medals.
Laurence said: “I’ve been to all the games since then apart from on two occasions. I’ve also been to the World Games in France and Canada.
“This year I am in the 1,500m, 800m, 10k cycle race, 5k run and 5k walk. The Games are very important to us as a family and my wife, Tina, is now the manager of the Kent team.”
Sue Hills, 54, from Ashford, was in her twenties and had just had her daughter when her GP told her she had polycystic kidneys, a genetic condition.
Sue was told she would need a transplant within 15 years. She said: “I was completely shocked and had no idea. I am adopted, so I have hardly any medical history. I was only in my twenties but I just had to pick myself up and carry on looking after my three-year-old son and six-week-old daughter.”
When Sue was 39, her illness worsened. “In May 1997, I had renal failure and my kidneys stopped working. I went to Kent and Canterbury Hospital three times a week for Haemo dialysis.
Sue was put on the organ donor transplant register and was waiting for a match. She said: “The hospital gave me a mobile phone, which I had to carry around with me at all times in case a kidney became available.
“One afternoon, just a few months later, I was at my sister’s house with all my family when the phone rang. I’d left the phone upstairs and I missed the call.
“Twenty minutes later, it rang again and my consultant told me there was a kidney for me and I had to get to Guys Hospital immediately. By midnight I’d had the operation and was on the ward.
“My donor was a 28-year-old man who had died in a road traffic accident. I am so grateful that he was carrying his donor card and that his family supported his decision.
“It changed my life. I had to give up my job as an office manager two years before my operation because I was so tired. Six months after the operation I was back in work full time as an events manager.”
Sue uses her spare time to help others with kidney problems. She said: “I am chairman of the Kent Kidney Patients Association and I meet a lot of people waiting for a transplant. I reassure them that transplants have longevity and they can see I feel well again.”
Sue has won silver medals for swimming in the British Transplant Games. She said: “I will be taking part in the donor walk this year and can’t wait to see the opening ceremony. Each person at the Games has their own story but all of us have the same gratitude towards our donors.”
Sandie Tiley, 60, from Birchington, was told when she was 20 years old and expecting a baby that she had polycystic kidney disease and would eventually need a transplant.
Sandie said: “At the time, it didn’t register. I felt well and it seemed such a long time away. I didn’t let it get in my way of doing what I wanted to do and I got on with my life. I was very lucky as I was so well. But as I got older, it began to hit home, especially when my father sadly died of the same condition.
“When I was 48, my doctor said I needed a transplant and I went to see a consultant at Kent and Canterbury Hospital. I was placed on the NHS Organ Donor Register.”
Gradually Sandie’s health worsened as the cysts on her kidney grew larger and her kidney function weakened. Her family had tried to donate their kidneys but her husband was the wrong blood group and her daughter was found to have the same condition.
One afternoon she got a call from her best friend, Jennifer, who she had known since she was 22. Sandie said: “Jennifer asked me what blood group I was. I told her and she said she had given blood that afternoon and had found out her blood group and was now going to give me her kidney.
“I was shocked. My first reaction was I couldn’t put her through that. Not in a million years. She had three children and I just couldn’t let her do it. But she insisted and we became one of Kent and Canterbury’s first cases of an unrelated live donor transplant match.
“It was a special time for us both as we travelled to and from Guys Hospital in London. We kept each other’s morale up and remained positive.
“A year later, in April 2005, we had the operation after a lot of tests. Although we couldn’t see each other, it was a great comfort to know we were recovering in beds next to one another.”
The recovery went well and Sandie was up and about after 10 days and Jennifer was ready to go home after three days. She said: “My kidney function practically returned to normal after the transplant. It was amazing.”
In 2007, Sandie entered the British Transplant Games and came away with a bronze medal in the 3k walk. She said: “I was so excited to have that medal. Before the operation I was so unfit and now my life has completely changed. Now I train all year round and take part in the 100m, 200m, 3k run and 3k walk.
“I’ve won many medals but I gave away my first two gold medals. One was to my consultant and one to Jennifer. I can’t imagine how my life would be today without them.
“To anyone thinking of joining the donor register, I urge them to take that step. You do not have to be related to someone to help them. My best friend gave me the greatest gift. She gave me life and a life that I can enjoy with my husband, two children and five grandchildren. I count myself so very lucky.”
Jennifer Leaver, 56, from Southend, said: “Normally if someone is ill you cannot do anything to help them get better. Being able to give Sandie a kidney was great and it has been really rewarding for me to see her so well and able to enjoy life. I am perfectly fit and well with just one kidney and would urge others in a similar situation to join the organ donor register.”
By the time she was just 18 months old, Nadine Guest from Deal had already had both her kidneys removed and was on dialysis four times a week.
The tiny tot, now six years old, was born with a serious condition, Congenital Nephrotic Syndrome, that caused her kidneys to leak fluid and protein into her body.
Her first kidney was removed when she was eight weeks old – and she spent 39 weeks of her first year of life in hospital.
Mum Adele said: “She was desperately poorly. She had dialysis four times a week at the Evelina Hospital in Westminster. We had to be at the hospital for 9.30am and travelling from Deal on the commuter train was very difficult as she was so ill.
“In July 2008, Nadine received a kidney from a deceased donor from the Devon and Cornwall area. She was in hospital for 11 weeks after the transplant and had surgery three times as her wound took some time to heal.
“We returned to the Evelina every week for the first year and now, four years on, we go every six weeks.
“I really wish the donor’s family could see what a difference the transplant has made to Nadine. She wouldn’t be here today without it. While she has good and bad days, she is living life to the full. She loves school, going to the park and has many friends.
“All she talks about is the British Transplant Games, as it is great fun and a chance to meet up with friends she’s met at hospital over the years. She has been competing since 2009 and won bronze and silver medals. This year she’s doing the long jump, 50m dash, obstacle race and ball throwing.
“If only people could see the children in hospital waiting for transplants and how poorly they are then they might become an organ donor. To see these children competing at the event brings tears to your eyes. It is absolutely amazing.”
Phil Penhaligan, 46, from Larkfield donated his kidney in 2010 to his son George, who is nine. George first became unwell when he was five.
He said: “George was a healthy boy but contracted Meningococcal Septicaemia in 2006 when he was five years old. He lost the function of both kidneys, some fingers on his left hand and some fingertips on his right hand. It nearly killed him and he was in hospital for three months moving from Maidstone Hospital to St George’s Hospital in Tooting and then to Evelina Children’s Hospital in Westminster.
“It was a really hard time and I did shifts with his mum so he was never alone.
“He had dialysis three times a week for a year at the Evelina, which meant travel to London every other day. George was quite unwell through his dialysis. He had low energy, he stopped growing and his weight was hard to stabilise because his diet was so restrictive.
“Six months into dialysis, consultants talked to us about a kidney transplant and George was added to the organ donor register. They tested me and his mum for live donor matching and I was the best match so we decided that I should be the one to donate, as this was best for George.
“In January 2010, my kidney was removed at Guy’s Hospital, transported across London and transplanted into George using keyhole surgery at the Evelina.
“The difference in him was amazing. He was back to normal and running around within three days. It took me longer to recover as the donor’s operation is more complicated. It took me three months to feel myself.
“In the two years since the transplant George has grown a whopping 20cm and gained over 10Kg in weight and is now completely back to normal growth levels for a child of his age.
“George knows that he could have died and some of the children he met are no longer with us. I am so pleased I could help him and now there will always be a part of me looking after him wherever he goes.
“For George, the British Transplant Games enables all the children who he met during dialysis to get together and have fun.
“George has competed for the last three years and is hoping for a medal this time. It’s such a great event and clearly demonstrates to the competitors as well as the spectators just how much difference a transplant makes.
“I think if people saw all the young children on dialysis and waiting for kidneys on the third floor of the Evelina Hospital every Monday, Wednesday and Friday then more people would join the organ donor register.”
Verlie Mayes, from Bearsted, and her family are hugely thankful to the brave nurse who asked ‘the delicate and difficult question’ in their darkest hour.
Despite major surgery to try and save their son James, 20, doctors at Maidstone Hospital confirmed the family’s worst fear. He had suffered irreversible brain damage. And, as hard as it was to hear, their 6ft 3ins gentle giant was not going to wake up.
Retired nurse and midwife Verlie said: “James had been in intensive care for two days. We’d sat by his bedside, held his hand, talked to him and we’d said our goodbyes,” said Verlie, 65.
“He was a caring, sensitive, young man, who had a wicked sense of humour. When the nurse asked if we had thought about organ donation, even in our grief, we didn’t hesitate. We knew it was what he would have wanted. It was the right thing to do.
“Out of something so absolutely awful came some good. James saved the lives of three people – and that has had such a positive impact on our grieving.”
A keen rugby player and cricketer, James, was found unconscious by a lodger on 12 March 1990.
Verlie said: “It was a sunny day, my mother-in-law and I were gardening and my husband Robin and daughter Katherine had gone for a walk on the North Downs.
“I had a phone call from the police saying James had been involved in an incident and to get to the hospital. This was so unlike him. A friend met me at reception and said James was already in theatre. It was only then, I realised how serious it was.
“When the police said they had found a suicide note I screamed ‘no’, I just couldn’t believe it. He hadn’t been diagnosed with depression, he had a girlfriend, no debt, lots of friends and a family who loved him very much.”
Retired police officer Robin, 64, Verlie, and Katherine, 34, spent the next two days at James’ bedside, praying for a miracle.
Verlie said: “His friends came in to see him and on 13th doctors attempted to wean him off the sedation. That night I remember getting up about 5am. I felt this awful emptiness and darkness. I said to Rob, ‘he’s died, I know he’s gone’.
“When we got to the hospital we were told that James’s brain had coned at 4am, meaning he was now brain dead.
“We went in to see him. Katherine took hold of me and said, ‘he’s gone mum’. We looked at him and we knew he wasn’t with us anymore, his expression was different, our James had gone.
“There are organ transplant teams now, but 12 years ago, it was down to the nursing staff to ask that delicate question. I’m so grateful to nurse Debbie, for her professionalism and bravery.
At 10pm on 15 March, 1990, James saved the lives of three other people donating both his kidneys and his liver.
Verlie said: “Three weeks later I was going through James’s wallet and he had applied for a provisional driving licence and I saw that he was on the Donor Register. He hadn’t told me. I was so thankful we had made the decision we had.
“On the first anniversary of James’ death, I wrote to all three recipients.”
James’ kidneys went to a 31-year-old dad-of-two and a 54-year-old mother of two sons, and his liver to a man in his 60s.
Verlie said: “Saying ‘yes’, has kept James alive. He was always trying to help people, now he’s doing it in his death. It’s such a positive legacy from such a futile loss.”
Verlie is involved in ‘Survivors of Bereavement by Suicide’ support group. If you have been affected and would like help, contact 0844 5616855 or visit http://www.uk-sobs.org.uk.