For those who make the courageous decision to give away a kidney, Dr John Scoble is a familiar face. As a renal consultant, he has probably counselled and assessed more donors than any other UK doctor. Beyond his own hospital, he is the first person who appears in The Gift of Life, a film describing the benefits of donation, but not shying away from the risks. It has been watched by more than 23,000 people considering whether it is something they could do.
Then in 2009, Dr Scoble received a phone call, asking whether donation was something he would do. "In many respects, it called my bluff," says Dr Scoble, who works at Guy's and St Thomas's NHS Foundation Trust in London.
"My cousin Derek has a progressive, chronic kidney condition called nephrotic syndrome and I knew he would eventually benefit from a kidney transplant. I am blood group O, which means I am a universal donor. I had said I was happy to be a donor, safe in the knowledge that Derek's wife Janis was fit and had also offered to donate. It was an offer made in principle, as it was the right thing to do, but I never expected to be called upon."
All appeared to be going well for Janis to donate to Derek and a date for the operation was set. Then a CT scan revealed some scarring on Janis's kidneys, making her unsuitable to donate. When asked if he was still happy to be a donor, Dr Scoble replied that he was and his wife was very supportive. But he found his own emotions were surprisingly complex.
"In principle, donation should not be a major issue for any fit adult," says Dr Scoble. He warns his patients of the one in 3,000 mortality risk from donation. He then puts the odds into context by explaining when a woman conceives, her mortality risk from pregnancy and birth is one in 9,000.
"I was uniquely well placed to know exactly what would be involved. But there was a dread of uncertainty. I had not had surgery since the age of 12 when my appendix was removed. Living donation is the only procedure where a fit person goes into surgery in an operation which has no benefit for them personally and potential to do harm," says Dr Scoble, 56, a father of two.
He decided that if he was going to donate, he would do so in his own unit. Knowing his own colleagues and the unit so well, he felt that should the transplant fail, he would have no issues with the process. They also agreed that initial tests would be confidential, with only two colleagues aware of what he was embarking upon.
One of the first assessments was a measure of kidney function called the glomerular filtration rate (GFR). "The very nice nuclear-medicine technologist explained what the test was and how it measured my kidney function. I nodded. The CT angiogram was another insight. As I went into the CT scanner I realised the issue raised by patients that the gown did not cover one's naked bottom was real."
Dr Scoble describes the process of assessing a living related donor as a "steeplechase". Initially, anyone with major health problems such as having had a heart attack or being diabetic will be excluded. There follow CT scans of both the kidneys and kidney arteries, chest x-ray and kidney function.
Derek's phone call was made in November 2009. By the following January, as the assessment process was taking place, Derek's kidneys failed and he started dialysis.
"All sorts of emotions are swirling around during the tests. At times, you do think if something comes up which is negative and means you can't donate, you have done your best but you are off the hook. There would be some sense of relief. Equally, we can and do sometimes find apparently healthy people going through the assessment process have a serious underlying problem. If they found that I could not donate, I would feel a failure. It would mean that I was not as fit as I thought. It would also mean that I could not deliver my obligation to my cousin."
The results were mixed. Tissue typing showed Dr Scoble and John were as perfectly matched as possible – comparable with those of siblings. But rather than having the usual one artery per kidney, Dr Scoble had a total of six. This would present a major challenge for the surgical team. Many kidney units would have turned him down as a result, judging the operation to be too high risk. As a large, specialist unit, it was decided that the transplant would proceed at Guy's and St Thomas's. It took place on March 26, 2010.
"I came round around lunchtime feeling a little sore, but otherwise well," recalls Dr Scoble. "I was waiting for my colleagues to come, pat me on the back and tell me how Derek was and how well the kidney was working. By teatime, when the 'good news' was not delivered, I had a deep-seated feeling of dread. I then had one of the blackest 24 hours of my life."
During transplantation, there had been a clot in one of the arteries supplying the kidney. Without normal blood flow, the kidney had failed. Derek, who is 62, was rushed into theatre twice within 12 hours. Each time the kidney was removed then "sewn in" again, in desperate efforts to make it work.
Failure of a transplanted kidney is not common, but does occur in one to two per cent of all cases. "I knew it was possible," says Dr Scoble. "It is one of the first things I discuss with potential donors and ask them would they regret their decision if the kidney fails. I couldn't ask 'why me' because I had worked with people who had been through it. But lying there knowing Derek was having a terrible ordeal in ITU and my kidney could end up in a bucket was very hard indeed. An intellectual understanding of the odds does not in any way prepare you for how it feels emotionally.
"I had a feeling that I was responsible for requesting a very high risk procedure from my colleagues."
Dr Scoble's recovery was fairly typical for a fit donor. He returned home after two nights in hospital, with a little soreness which eased after one week. Meanwhile, Derek struggled in intensive care for 14 days, the new kidney failing to work due to the trauma of the difficult transplantation process. Four weeks later, when Dr Scoble returned to work, Derek was still in hospital. The kidney was beginning to function, but Derek remained weak and in pain.
At Dr Scoble's first transplant clinic, he saw a patient who had been on the same ward as Derek. "The patient came in and sat down. 'How are you doctor? Are you well?' he asked. 'Do you have any pain after the operation?' It was a genuine enquiry, very surreal and made me feel very humble."
It would take Derek a year to recover fully from surgery. But his kidney is now functioning and he has been able to return to playing golf and active family life which became impossible as his kidney deteriorated. Derek has no regrets about what proved to be an extremely challenging process, only gratitude to his cousin and the medical team who treated them.
"Derek is the keeper of my kidney and Janis its protector," said Dr Scoble.
He is uniquely placed. Very few doctors advising on major surgery have any direct experience of those procedures themselves.
"I have said that it is like buying a new car. The salesman can explain how many gears it has, how fast it can go and how little petrol it uses. If we then ask what is it like to drive and the salesman says they do not drive, we would immediately discount their opinion.
"This is the challenge of clinicians advising a treatment of which they have no personal knowledge."
But it has not changed his views or approach.
"It has deepened my understanding of what donors go through; the interplay of doubts and fears with the desire to fulfil your obligation. It has made me even more aware of the importance of explaining about the possibility of losing the transplanted kidney."
Yet Dr Scoble does not share his experience as a donor with his patients.
"We did wonder whether I should stop carrying out assessments of donors," said Dr Scoble.
"You have to be impartial – as a doctor, if you say you have been a donor, it could be seen as a lever of influence upon the person you are talking to."
But occasionally personal recollections do come to the fore.
"I was doing a ward round recently and a living related donor was describing what is known as shoulder tip pain. I had it myself. It is due to the gas used during surgery to create more space around the kidneys. I explained how you feel it when you lie down, but it disappears when you sit up. The surgeon glanced at me. I used my stock line for these situations and quickly added, 'some patients have told me'."