David: I felt better than I had in a number of years

David Hemmings Photo

David, from Devon, a retired civil servant and lay magistrate, donated a kidney in 2010 at the age of 67.

 

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)