“Taking into account modern surgical techniques, altruistic donation is not the big deal many people think”
David Hemmings, aged 67, from Devon, a retired civil servant and lay magistrate, donated a kidney in 2010.
Probably the most frequent question I have been asked has been, “Why?” For me, this was fairly simple and straightforward; I believe that if you are in a position to help someone else less fortunate than yourself, then you should do so.
I have been a blood donor since the mid-1960s and have carried an organ donor card for nearly as long. I heard indirectly about friends of friends who were on dialysis or had received a transplant, so I was particularly interested in an article about the possibility of altruistic donation. I think this was in The Times about two years previously.
My first step was to search the internet, where I found the website www.organdonation.nhs.uk – it was informative and straightforward, answering most of the questions that were on my mind. This information enabled my wife and me to discuss the possibility of me donating a kidney in an informed way, and we decided to find out more. The fact that this early decision was a joint decision was essential for both of us; I cannot overstate the importance of this mutual support.
I could become a donor on condition I lost 10 kilos.
The website also provided me with the contact for my local living donation transplant co-ordinator, who sent me further information. Having studied this with my wife, I then arranged to meet my local co-ordinator. Following some preliminary tests, an appointment was made for me, together with my wife, to see the local consultant nephrologist.
Approaching this appointment I thought there was a very real chance that I would not be accepted as a donor; after all, I was 66 years old, taking medication for hypertension, and had suffered from schistosomiasis when living in central Africa in the late 1960s. I was, therefore, somewhat surprised when the consultant announced he was prepared for me to be a donor on the sole condition that I lost 10 kilos! Suddenly, it was all down to me; gone was the convenient let-out of, “Well of course I wanted to do it, but it wasn’t possible because of … ” I had been advised to lose weight countless times before, but suddenly this was different. It was no longer just in my interest to actually do it, this challenge gave me the determination and extra incentive to do it. The other important point that he made was the need for support from family and close friends.
I immediately started to take much more notice of what, and how much, I was eating and drinking. I also started to make a concerted effort to get out for a good walk nearly every day and, just as predicted, the weight started dropping off and I reluctantly had to admit that as a result I was feeling fitter than I had for years.
There followed several weeks and months of the most comprehensive tests, including blood, X-rays, ultrasound echocardiogram, renogram, nuclear medicine kidney test (which turned out not to be as frightening as it sounded), physical examinations, clinical psychological analysis and then, inevitably, more blood tests. The appointment with the consultant transplant surgeon who would be performing my operation was particularly useful and very reassuring; he explained the exact procedure he would follow and the reasons why. It would be the left kidney and the operation would be hand-assisted. I found it somewhat strange to be undergoing so many tests and examinations when there was nothing wrong with me, but it did bring home to me the complexity of the procedure and the wide range of skills and expertise of the team of people involved. Finally there was an appointment with the local representative of the Human Tissue Authority. Throughout this time I was most impressed by the professional, open and friendly approach of everybody involved, especially my local co-ordinator, who was most supportive in keeping us up to date and fully in the picture.
Finding a match
In September, I was told that a potential good match had been found and a date for the transplant operations was agreed, the eve of my 67th birthday!
This called for more blood so that further matching tests could be carried out with the intended recipient’s blood.
Up to this time, I had not told many people about what I was doing, only close family and friends and, as I would need some time off, one or two colleagues and officials at the local magistrates’ court where I sit as a voluntary lay magistrate. It therefore came as a big surprise when just a week before the operation an old acquaintance I had not seen for some time called to see me. She had brought me a present and wanted to wish me good luck for the operation. I suddenly remembered that her brother had received a kidney transplant many years before, but I was still a bit miffed that she had heard about what I was doing. She explained she had been told by one of our closest friends, who she happened to be working with, because two years earlier she had donated a kidney to her brother; his original transplanted kidney had started to fail after 20-odd years.
The present was a copy of a small book entitled Blue Pyjamas, which she had written and had privately printed to tell the story about her kidney donation. It was a great help and comfort for my wife and me to be able to sit down and talk to someone we knew who had been through the experience. Reading the book was most useful, as it dealt with a lot of the personal feelings and concerns that I was privately thinking about. Finishing the book, I was relieved that I was donating altruistically and I did not know anything about the recipient; they were remote and, therefore, I was not emotionally involved. It was nothing like the additional stress that my friend had felt for her brother and his young family.
It seems to me that it would be relatively simple to set up a database of all donors who agree to discuss kidney donation with a potential new donor. The local co-ordinator could then quickly identify an ex-donor who was local to the potential new donor. Talking to a friend and knowing I could easily contact her was a real comfort.
The operation and recovery
By the time my wife and I arrived at the hospital on the day of the operation, I felt totally relaxed. Having had the meeting with the surgeon, I knew exactly what was going to happen. In the reception area, we were delighted to be visited by my local co-ordinator, who reassured my wife that she would keep her in touch with developments during the day. Because of the friendly, open and highly professional attitude of the entire team that I had met, I was completely confident I was in the best possible hands.
After the operation, recovering in a small ward of four beds, I was surprised at the low level of pain that I was feeling; the main problem was the feeling of nausea, presumably as a result of the anaesthetic, which did take a few days to wear off completely. Throughout my stay, I was seen by my local co-ordinator and my consultant transplant surgeon every day.
On the second day, the surgeon told me he had heard from the recipient’s surgical team – the operation had gone well and the kidney appeared to be working well, the best possible news I could have heard. Suddenly and unexpectedly, I felt very emotional and, when told that, on recovery, the recipient had immediately asked after me, I found it difficult to hold back the tears – so much for being remote and not emotionally involved.
I was very fortunate in that my stay in hospital was not very long; the operation had taken place first thing on a Tuesday morning and I was discharged just after lunch on the Friday. The level of care and attention I received from the nursing staff and doctors cannot be faulted. One thing about the stay in hospital that would have made a huge difference would have been the option of a private room. It was a busy area and I found it difficult to get much sleep.
There was also the issue of privacy; the very nature of altruistic donation is that you don’t talk about it very much – the last thing you want is for people to think you are showing off or on a personal glory mission. It is almost impossible in a general ward not to overhear conversations between medical staff and other patients, and in my case a registrar doing his rounds asked me in front of other patients why I had donated a kidney.
A little privacy would also have helped in coming to terms with the emotional aspects. On a lighter note, a private room would have avoided my concern on the last morning in hospital; during the night I was moved to another unit and in the early morning, as screens were pulled back and the ward lights slowly illuminated the scene, I saw that the patient directly opposite was lying in bed handcuffed to two prison warders. He had been admitted from a local prison but fortunately was not one of my previous customers from the magistrates’ court!
We got home about teatime on the Friday and I went straight to bed; back in the peace and quiet of my home I slept for 10 of the next 14 hours. By lunchtime on Sunday, I felt completely clear of any feeling of nausea and had only a slight discomfort from the surgical wound, so decided to take a short walk. Thereafter, I managed to walk a bit further each day despite the weather; in about three weeks, I felt completely back to normal and it was about then that I saw the consultant transplant surgeon, who signed me off.
Shortly afterwards, I received, via my local co-ordinator, a letter from the recipient. This was obviously very moving, but the thing that really struck home was how quickly their life had changed, especially all those little aspects of our daily routine that, if you are not on dialysis, you take completely for granted – but I am sure I won’t ever again.
Increasing rates of donation
One thing I don’t understand is why we still have such a long list of people awaiting kidney donation. Using some unresearched ballpark figures and assuming there are about 7,500 people on the waiting list, another 15,000 who would benefit from a transplant, and a UK population of 60 million, there should be more than enough donors.
Assuming that half the population is either too old or too young to donate and that two-thirds of the remaining have family or other commitments precluding them from donation, and three-quarters of this subsequent remainder are non-compatible or are precluded for medical reasons, we are left with about 2.5 million potential donors. That means only about one in 200 need come forward to satisfy the list.
This leads to the question of why they are not coming forward. I think there are two main reasons for this. First, partly because of the need for strict confidentiality, there is a bit of a mystique about altruistic donation and lack of knowledge leads many people to believe it is an extraordinary thing to do. It is an important decision to make: there are inconveniences and there are risks, but these are no greater than many aspects of our busy daily lives. Also, taking into account modern surgical and nursing techniques, it is not the big deal many people think.
Not enough people know about altruistic donation
Second, poor communication means that the right messages are not getting through to the potential donor community; I was very surprised to find that at least three healthcare professionals I had contact with during the assessment and hospitalization stages were totally unaware that altruistic donation was legally possible.
This is why I have agreed to write this article and why I have agreed to contribute to the academic research project “Understanding the social and psychological processes in altruistic kidney donation”. I also feel that the government should be more proactive; getting teenagers to tick a box on a driving licence application form and vague promises of some Nectar points falls woefully below what is required and is an insult to the thousands patiently waiting on the list.
Finally, it has not all been about donation; I have personally received much from the experience, in addition to the knowledge that I have helped improve the quality of life of someone else. Perhaps the greatest thing is a feeling of privilege and gratitude for having been able to contribute to the work of the transplant teams who are doing this amazing work, week in and week out.
Reprinted by kind permission of the British Journal of Renal Medicine (2011;vol 16, no. 1)