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| 'Through organ donation, someone’s death equals new life' | 'Through organ donation, someone’s death equals new life' |
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| Matthew Hopkins is the chief executive of the Barking, Havering and Redbridge University Hospitals NHS trust in north-east London. Here he talks to Denis Campbell about the kidney transplant he underwent last year and why he supports switching to a “presumed consent” system of organ donation. | |
| I have adult polycystic kidney disease, which I inherited from my mother Val. When she was diagnosed with it in 1993 the NHS staff looking after her advised that her children – myself and my sisters Ruth and Marie – needed to go and get tested too. | I have adult polycystic kidney disease, which I inherited from my mother Val. When she was diagnosed with it in 1993 the NHS staff looking after her advised that her children – myself and my sisters Ruth and Marie – needed to go and get tested too. |
| Ruth also has it but Marie doesn’t. Ruth, who is three years older than me, is basically well but her kidney function has started to slowly deteriorate. | Ruth also has it but Marie doesn’t. Ruth, who is three years older than me, is basically well but her kidney function has started to slowly deteriorate. |
| With that form of kidney disease the normal tissue in the kidney is replaced by cysts that fill up with fluid and then some of them pop, which causes discomfort and leads to some of the fluid running into your blood and bladder. My mum went onto dialysis and died later, though of bowel cancer. | With that form of kidney disease the normal tissue in the kidney is replaced by cysts that fill up with fluid and then some of them pop, which causes discomfort and leads to some of the fluid running into your blood and bladder. My mum went onto dialysis and died later, though of bowel cancer. |
| Luckily I remained largely symptom-free for a good few years. For example, I didn’t have nausea or a urinary tract infection, both of which are quite common side-effects. | Luckily I remained largely symptom-free for a good few years. For example, I didn’t have nausea or a urinary tract infection, both of which are quite common side-effects. |
| But eventually, in 2013, Debasish Banerjee, a renal consultant at St George’s hospital in south London, where the medical team had been looking after me, told me that it was getting to the stage where at some point I would have to go on kidney dialysis. That was pretty sobering news to get. | But eventually, in 2013, Debasish Banerjee, a renal consultant at St George’s hospital in south London, where the medical team had been looking after me, told me that it was getting to the stage where at some point I would have to go on kidney dialysis. That was pretty sobering news to get. |
| Peritoneal dialysis takes six or seven hours at a time, four or five times a week so it would have made being a hospital trust chief executive tricky. A tube is fixed into your abdomen and they draw several litres of fluid out of your bowels. That fluid contains the toxins your kidneys would have excreted into your urine. I could have tried doing it overnight but that would have disrupted my sleep. So dialysis was clearly going to have implications for me. It was certainly a concern. | Peritoneal dialysis takes six or seven hours at a time, four or five times a week so it would have made being a hospital trust chief executive tricky. A tube is fixed into your abdomen and they draw several litres of fluid out of your bowels. That fluid contains the toxins your kidneys would have excreted into your urine. I could have tried doing it overnight but that would have disrupted my sleep. So dialysis was clearly going to have implications for me. It was certainly a concern. |
| Adult polycystic kidney disease is a fatal condition due to the complications associated with chronic end-stage kidney disease. And people do die while waiting for a kidney transplant, which ultimately is the only definitive treatment for it. So you know that if a kidney transplant isn’t available, there is an inevitability about potential early death coming along. I obviously had to consider that prospect. | Adult polycystic kidney disease is a fatal condition due to the complications associated with chronic end-stage kidney disease. And people do die while waiting for a kidney transplant, which ultimately is the only definitive treatment for it. So you know that if a kidney transplant isn’t available, there is an inevitability about potential early death coming along. I obviously had to consider that prospect. |
| I’d begun seeing if any relative or friend would consider giving me one of their kidneys, as a living donor. But then I got woken up by a phone call at 8.10am on 12 March last year. A renal doctor at St George’s said: “We’ve got a kidney for you from a cadaveric donor that’s a good match. We need to do the operation today so come straight away.” | I’d begun seeing if any relative or friend would consider giving me one of their kidneys, as a living donor. But then I got woken up by a phone call at 8.10am on 12 March last year. A renal doctor at St George’s said: “We’ve got a kidney for you from a cadaveric donor that’s a good match. We need to do the operation today so come straight away.” |
| I was anaesthetised about 4pm, went down to surgery and began waking up at 8.30pm. My wife and kids, who were 13 and 15 at the time, were there too. The kids knew their nan had had a transplant, that I had the same condition and that one of them could have it as well but they won’t be checked until they’re 18. There was no time to prepare ourselves for me not waking up from surgery, for example. It was quite an emotional day. | I was anaesthetised about 4pm, went down to surgery and began waking up at 8.30pm. My wife and kids, who were 13 and 15 at the time, were there too. The kids knew their nan had had a transplant, that I had the same condition and that one of them could have it as well but they won’t be checked until they’re 18. There was no time to prepare ourselves for me not waking up from surgery, for example. It was quite an emotional day. |
| I’m now a three-kidney man. With polycystic kidneys, they leave in the two kidneys everyone has rather than remove them. | I’m now a three-kidney man. With polycystic kidneys, they leave in the two kidneys everyone has rather than remove them. |
| I was off work for almost six months afterwards. My kidney was quite slow to wake up and start working. I did have some side effects initially, from the immunosuppressant drugs any transplant recipient has to take. And I did get a little bit of tremor. But I feel not too bad now. I’ve got more energy and I sleep better. | I was off work for almost six months afterwards. My kidney was quite slow to wake up and start working. I did have some side effects initially, from the immunosuppressant drugs any transplant recipient has to take. And I did get a little bit of tremor. But I feel not too bad now. I’ve got more energy and I sleep better. |
| A while afterwards I talked to about 30 patients at St George’s who were waiting for a transplant about my own experience. I found that quite difficult, talking as a patient. I sensed that whilst everyone there might be hopeful that they’ll have a transplant soon, many of them will have to wait a long, long time, because there are far fewer organs available than there are patients needing them. The average wait is two years. So I had a real sense of how lucky I am but also that there must be lots of missed opportunities where people could donate but it doesn’t happen. | A while afterwards I talked to about 30 patients at St George’s who were waiting for a transplant about my own experience. I found that quite difficult, talking as a patient. I sensed that whilst everyone there might be hopeful that they’ll have a transplant soon, many of them will have to wait a long, long time, because there are far fewer organs available than there are patients needing them. The average wait is two years. So I had a real sense of how lucky I am but also that there must be lots of missed opportunities where people could donate but it doesn’t happen. |
| I welcome the fact that Theresa May wants the organ donation system in England to change from one based on people opting in to one of people opting out. | I welcome the fact that Theresa May wants the organ donation system in England to change from one based on people opting in to one of people opting out. |
| If someone dies, and their organs are viable, then that death could lead to as many as seven people having their life extended or saved, because each of them could receive a kidney, liver, heart, lungs or eyes. That’s absolutely amazing. People who have lost a loved one, where their loved one’s organs have helped others, they say that those organs being donated was absolutely the right thing to do and they find some solace in the fact that their loss benefitted others. It helps them to get over the loss of their loved one by knowing that as a result someone else had the gift of life. | If someone dies, and their organs are viable, then that death could lead to as many as seven people having their life extended or saved, because each of them could receive a kidney, liver, heart, lungs or eyes. That’s absolutely amazing. People who have lost a loved one, where their loved one’s organs have helped others, they say that those organs being donated was absolutely the right thing to do and they find some solace in the fact that their loss benefitted others. It helps them to get over the loss of their loved one by knowing that as a result someone else had the gift of life. |
| Switching to presumed consent would be a civilising thing to do. To me, it’s about one of those characteristics – generosity – that being British is all about. Being mindful and considerate of other people in distress. Presumed consent fits that perfectly. But as well as making that switch, we also need a bigger public conversation about death and dying. And I’d like that conversation to include that, through organ donation, someone’s death can equal new life, more often than it does now.” | Switching to presumed consent would be a civilising thing to do. To me, it’s about one of those characteristics – generosity – that being British is all about. Being mindful and considerate of other people in distress. Presumed consent fits that perfectly. But as well as making that switch, we also need a bigger public conversation about death and dying. And I’d like that conversation to include that, through organ donation, someone’s death can equal new life, more often than it does now.” |
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