'I donated a kidney… I now know what my patients go through': The remarkable story of a top transplant expert
Recovering in his hospital bed having just undergone surgery to donate one of his kidneys, Dr John Scoble confessed to feeling ‘a little sore’. As a consultant nephrologist and transplant expert at London’s Guy’s and St Thomas’ NHS Foundation Trust, he had advised patients on the exact same procedure for decades.
But two years ago, by an extraordinary twist of fate, John discovered just how it felt to be a patient when he became a donor to his 66-year-old cousin, Derek Scoble.
John says: ‘Intellectually, I knew what would happen, but emotionally the experience changed my perspective completely. Becoming a donor was an amalgam of all the things I had heard from my patients. I now know the hope, the fear, the disappointment when there are setbacks, as there were in our case – and the ultimate joy that comes when the transplant is a success.’
Derek Scoble and his cousin and donor, Dr John Scoble
John, 57, and Derek were born in Plymouth. Their fathers – both now deceased – were brothers but John says that because of the age gap between them, he and Derek did not have a strong bond as children.
However, 15 years ago, Derek contacted his cousin because he wanted to ask him about a condition he had just been diagnosed with – nephrotic syndrome, which causes the kidneys to fail.
This can occur in patients who have diabetes, infections such as hepatitis, immune disorders and cancer, and it can affect all age groups. The most common symptom is swelling, particularly in the arms and legs, and also in the abdomen.
John says: ‘Nephrotic syndrome is a progressive disease of the kidneys, which normally filter toxins from the blood. In his case it was idiopathic – in other words, the reason that Derek had it was unknown.
‘Donors must be in very good overall
physical health and have a healthy organ if the transplant is to work.
Having spent 20 years working with living donors, I know that problems
can be encountered, often late in the process,’ said John.
‘It can be controlled with drugs for some years but over time kidney function diminishes, meaning that at some point a transplant is needed. I told Derek that as I was blood group O, the universal blood group, I would be happy to give one of my kidneys to him when the time came that he needed a donor.’
In 1998 Derek’s condition was stable, enabling him to stay fit enough in his job as a fireman. But his kidneys failed 11 years later, and it was then he contacted John to ask him if his offer still stood – which it did.
John, who lives in Wimbledon, South-West London, says: ‘As it turned out, Derek’s wife Janis had also offered to donate. She was 62 and had no medical problems that we knew about. I have to admit that the thought “I’m off the hook . . .” did go through my head.’ Before becoming eligible, a potential donor goes through a rigorous series of assessments. This includes scans of the kidney and the arteries surrounding it, blood tests to assess how well the organ is working, and tests to show up any underlying problems such as heart disease.
John says: ‘Donors must be in very good overall physical health and have a healthy organ if the transplant is to work. Having spent 20 years working with living donors, I know that problems can be encountered, often late in the process.’
Unfortunately, this scenario is exactly what happened – a CT scan showed that Janis’s kidneys were scarred, ruling her out of the operation. ‘This scarring had no effect on Janis but we transplant only perfect kidneys,’ explains John.
Dr Scoble feels he is able to prepare his patients better now that he has been through the surgery himself
Derek continues: ‘Janis was devastated but no one would want to risk giving a scarred kidney to someone who already has kidney disease.
‘John and I talked extensively about the transplant and we were both confident in the team at Guy’s. They have a worldwide reputation of excellence – the fact that John was putting himself in their hands said it all.
‘But it must have been difficult for him because he knew only too well from his patients just what being a donor involves. As he says, we can function perfectly with one kidney but living donation is the only procedure in which a fit person goes into surgery in an operation that has no benefit for themselves.’
John admits the thought of surgery left him a little anxious. ‘I’d not had an operation since my appendix was removed when I was 12. Sometimes I would wake up in the night thinking, “I don’t want to do this.” I was worried I wouldn’t be fit enough.’
John returned to work after four weeks,
which is typical for a fit donor. But for Derek, it was 18 months before
he felt well enough to enjoy his favourite pastime – golf
But by the day of the surgery – March 26, 2010 – neither donor nor recipient was particularly concerned about what lay ahead.
John’s kidney was removed under general anaesthetic using keyhole surgical techniques. Derek was given the transplant via traditional open surgery, in which his damaged kidney was removed and the donor organ attached in its place.
‘I came round on the ward after five hours feeling a little sore, but otherwise well,’ recalls John. ‘However, I realised that no one had come to tell me that Derek was OK and a deep feeling of dread crept over me.’
In fact, Derek was still in theatre. While the procedure should have taken about four hours, he ended up in intensive care after 12 hours of surgery because one of the arteries to the kidney had developed blockages caused by blood clots.
‘When I came round two days later I didn’t feel too good,’ says Derek. ‘I was in intensive care for two weeks and I spent a total of eight weeks in hospital when it should have been five to ten days.’
John returned to work after four weeks, which is typical for a fit donor. But for Derek, it was 18 months before he felt well enough to enjoy his favourite pastime – golf.
‘It was touch-and-go for a while but now I feel absolutely terrific,’ he says. ‘I will never be able to thank John enough for what he did for me.’
John adds: ‘All my donors are told when I make my assessment that there is a two per cent chance that their donated kidney could fail in the first month of transplantation.
‘Many respond “But it won’t fail”, and to this I now tell them that although my kidney eventually thrived in Derek, it came so close to being part of that failure rate.
‘I was devastated and, like many donors I see, I told myself it wasn’t going to happen to me.
‘So now I can tell people that if I can become close to failing, it can fail for anyone else.
‘It’s a huge decision to donate a kidney and having done so myself I think I can prepare patients better for the rollercoaster ride it can be.’
lFor information about how to become a living donor, visit http://bit.ly/fwrpIt.