www.steveplatt.net

For the love of a stranger
(First published to accompany a Channel 4 'Dispatches' documentary, 3 February 2000)

'Thank you is what you say to someone who holds the door open for you. What do you say to someone who saves your daughter's life?' -- Ilya Ostrovsky speaking about Ron Johnson's donation of the lower lobe of his right lung for a transplant operation on Ilya's daughter Lisa

'We were warned from the start that it might not work. We were told that Lisa might not even survive until the operation. She was only given a week to live . . . It hasn't done me any harm. Certainly, have a go, consider it. Talk to your family obviously, get their agreement, but give it a go, give a shot and give someone the chance of living a normal life. It's well worth it. If it doesn't work out, at least you can think you've done something worthwhile . . . It makes you feel good inside to know that you've made that effort for somebody.' -- Ron Johnson speaking after he had learnt that Lisa Ostrovsky had died

For the love of a stranger

On 31 December 1999, while most of the world was celebrating the eve of the new millenium, 10-year-old Lisa Ostrovsky lost her fight for life in the intensive care unit of St Louis Children's Hospital in the United States. Among those grieving her death was a 48-year-old caretaker from Northamptonshire, England. A self-professed 'ordinary bloke', who had never met Lisa beforehand, he had done something quite extraordinary to try to save her life. For Ron Johnson, who lives with his wife Denise, a nurse, in a village in Northamptonshire, had donated part of his own lung for a transplant operation on a girl he didn't know.

It was a story that caught the imagination of the whole world -- the tale of this unassuming Englishman who had given part of his own, healthy body to try to save the life of a total stranger. Ron Johnson didn't meet Lisa until the night before the operation took place; and although the transplant turned out not to be successful, and he suffered severe pain following the removal of the lower lobe of his right lung, he does not regret having made the attempt. If it does nothing else, he hopes that his experience will help to draw attention to the worldwide shortage of suitable donors for transplant surgery -- and encourage the medical profession and governments to do more to address it.

The case of Lisa Ostrovsky highlights the tragedy of thousands of people in urgent need of organ transplants who must wait -- often in distress and frequently in vain -- until a suitable donor becomes available. Lisa suffered from cystic fibrosis, a progressive disease that was destroying her lungs. She needed two donors to save her life. Her mother was one, but because she had a rare blood group, it proved impossible to find a suitable match from among her own relatives to provide the second. Her father, Ilya, who was already using the internet to raise funds to pay for a transplant operation, decided also to use his website to make a worldwide appeal for a donor with Lisa's blood group to come forward. Ron Johnson did so.

Even then, the first hospital chosen to carry out the operation refused to accept Ron as a donor because he was not known to Lisa's family. Precious time was lost and Lisa's condition deteriorated while another hospital was sought out and Ron was subjected to a series of tests and intensive psychological screening to ensure that he had properly thought through all the possible risks and consequences. Only when the doctors were absolutely convinced that he knew what he was letting himself in for did they finally give the go-ahead.

Lisa, a Russian Jew whose parents moved to Israel soon after she was born, was operated on in the US, where transplants involving unrelated live donors now take place occasionally at a small number of hospitals. In the UK, where no such transplant has ever taken place, it is almost impossible for a would-be donor to be accepted unless there is some close personal connection with the recipient. The Royal College of Surgeons Working Party to Review Organ Transplantation, which reported in January 1999, acknowledged (in relation to kidney transplants) that 'there is now widespread acceptance of the concept of the genetically unrelated donor', but only 'provided that there is a close and long standing emotional bond between donor and recipient'. In practice, this type of transplant almost invariably involves donation from one spouse to another. (See transcript of interview with Professor Bobrow, chairman of ULTRA, for a discussion of this [LINK].)

The medical profession has tended to have two principal objections to the idea of unrelated live organ donors. The first is simply the belief that no one is likely to undergo the pain, disruption and risk associated with such an operation for the sake of someone they do not know. The second, and more importantl one, is the fear that someone might become a donor for the wrong reasons: as a result of coercion or financial inducement, or without properly understanding what is involved. Stories of a commercial trade in kidneys and other organs for transplant during the 1980s, and rumours of the murder of 'street children' and others to furnish this trade, led to tight restrictions being imposed upon any live organ donations (see The Law [LINK]).

Yet, in fact, there is no legal obstacle to prevent live donor transplants between people who do not know each other. If such transplants were to become even a little more common, it would go a long way towards dealing with what has become a growing global problem of a shortage of transplant donors.

The shortage

Advances in transplant surgery over the past 30 years have seen organ transplantation transformed from an experimental procedure with low success rates to a relatively common and effective form of surgery carried out throughout the world. Kidney transplants are now performed in most American, European and Asian countries, as well as in at least nine Middle Eastern and four African states. Heart, liver and heart-lung transplants are also becoming standard procedures in most advanced health services. Although survival rates vary according to both the organ transplanted and the country in which the transplant takes place, 75 per cent of the operations are successful (as measured by the number of patients surviving for at least one year after the transplant). In the UK, the figure is approaching 90 per cent for kidney transplants.

But with the increasing success of transplant operations has come an increasing demand for them. In the US, despite a well-organised national organ donation system and well-publicised campaigns to encourage donors, a recent study found that there were still 37,800 people on organ transplant waiting lists. Every year, almost 10 per cent of people awaiting a heart transplant die because no organ is available. In the UK, the number of people on the kidney transplant waiting list increased from 3,668 in 1990 to 5,693 in 1998, while those waiting for liver transplants rose from 57 to 209.

Fall in donor and transplant numbers

The latest figures show a continuing fall in both the number of organ donors and the number of transplants carried out. The number of donors fell by 7 per cent during 1998 and the number of transplants by 5 per cent. The reason was another sharp decline in what are known as cadaveric transplants, or transplants from people who have died. There was, in fact, a substantial increase in the number of living organ donors (the number of kidneys supplied by live donors rose from 174 the previous year to 244 in 1998), but this didn't make up for the continuing fall in organ donations from dead bodies.

There are two reasons for the fall in the number of organs available for transplant from dead bodies. First, improved road safety and intensive care treatments have substantially reduced the number of deaths of young and healthy people who provide the source of most transplant organs. Between 1989 and 1998, for instance, the proportion of donors resulting from road traffic accidents fell from 29 per cent (282) of all donors to 16 per cent (133). And second, the establishment of the NHS Organ Donor Register and associated publicity campaigns by the Department of Health have failed to persuade sufficient numbers of people to register as donors in the event of their death. In 1998, for example, fewer than one million names were added to the register. The number of donors is particularly low in the UK in comparison with other countries -- barely half what it is in the Republic of Ireland, for example.

The shortage of donors is also especially noticeable in certain groups of the population, notably among ethnic minorities. The chances of a suitable donor becoming available vary greatly according to the blood group of the recipient. In 1998, for example, there was a one in five chance of someone on the kidney transplant waiting list finding a suitable donor among people who have died if they had blood group A, but only a one in 15 chance if they had the rarer bood group B.

Waiting for a transplant

Ten years ago, Sarah Agboola was a normal, healthy 19-year-old. Then, quite suddenly, she became very ill; her kidneys had failed. In common with thousands of other people in the UK, she was to become dependent on renal dialysis to keep her alive. Three times a week, for four hours at a time, she is hooked up to a dialysis machine, which performs the job of a healthy person's kidneys, cleaning and purifying her blood.

'It was a massive shock to the system and really quite difficult to comprehend because you're suddenly told that without dialysis you can't live. So this dialysis machine keeps me alive, which is quite a heavy thing to take in when you're 19 . . . You have to come here three times a week -- it doesn't matter what you want to do, that's what you have to do and everything else has to fit around it.' -- Sarah Agboola

Nor does it stop there. As with all patients with kidney failure, Sarah's diet must strictly monitored. Anything containing sodium or potassium is toxic -- which turns the humble banana, among things, into a potential killer. Crisps or chocolate are restricted, but so too is her consumption of fruit or vegetables. And she is only allowed to drink 500mls of fluid in any 24 hours (a typical can of soft drink contains 350mls). Sarah has also been subjected to a series of operations to graft on 'access points' for the dialysis needles. Seven times in three years these have clotted up, forcing her to undergo replacement surgery simply to be able to have dialysis.

Her wait for a suitable donor continues. In fact, she did undergo one kidney transplant nine years ago but her body rejected the donated kidney. 'It's like a double whammy in a sense because you lost your kidneys out of the blue, you didn't think you were going to be ill, and then, after you've had this amazing operation that's going to make you well, you go through a year of hell. You take all these drugs, it's changed your body image, given you facial hair, put lots of weight on you, and you feel and you look like a freak, but you're thinking I've got this kidney and it's going to make me really well. And then, after all that, they say well, actually you've lost the kidney, oh well never mind, we'll put you back on dialysis and we'll get you another one.'

Nine years on, Sarah is still waiting.

Read a full interview with Sarah Agboola.

Live donors

One of the factors behind Sarah's body's rejection of her donated kidney may have been that it came from someone who had died. Doctors now report considerably lower rejection rates when organs come from live donors. This is partly explained by the fact that live donors are more often related to the person receiving the organ transplant. But an increased success rate is reported among unrelated donors too. This, together with the shortage of organs from people who have died, has led the medical profession to look more favourably upon live organ donations.

Donations of organs by live donors usually involve a kidney or, much more rarely, part of the liver or, as in Ron Johnson's case, part of a lung. Altogether, there were 244 living donor transplants of kidneys in the UK in 1998, four of lungs and two of livers. There were also 28 so-called 'domino' transplants of hearts, whereby someone receiving a heart-lung transplant but who has a healthy heart donates the heart to someone else.

None of these involved donors who were unknown to the recipient. But a growing number of kidney donors, in particular, do not now have a genetic connection with the person receiving the transplant. These are almost invariably spouses at present, but there is discussion within the medical profession about so-called 'swap donations'. These would involve, for example, spouses whose kidneys were not a good match for their own partner donating a kidney to a second couple in the same position. The healthy partner in that couple would then, in turn, donate one of their kidneys to the person in need of a transplant in the first couple.

New kidney donor guidelines

The shortage of kidney donors and the greater success rate of transplants from live donors has led to increased efforts to persuade more people to come forward as donors. At the end of January 2000, the British Transplantation Society and the Renal Association issued new guidelines for doctors, which they hope will encourage more donors to offer one of their kidneys for transplant [LINK to United Kingdom Guidelines for Living Donor Kidney Transplantation]. These organisations want to make more people aware of how, in the case of most healthy people, the loss of one kidney will not result in any adverse effects. The guidelines provide advice to doctors on how to identify suitable donors and how to prepare them both physically and psychologically.

John Scoble, clinical director of the adult renal unit at Guy's Hospital, launched the new guidelines with the words: 'We hope that by providing clear guidance for doctors, we will be able to identify more people who are suitable as living donors. This will enable more patients with kidney disease to receive a transplant kidney and have a better chance of long term recovery.'

Other doctors want to go even further. At the British Medical Association conference in Belfast in 1999, doctors passed a resolution calling for a change in the law, so that people would have to opt out of donating their organs in the event of their death rather than the present position where they have to opt in to being an organ donor. 'Presumed consent', as it is known, is currently used in some European countries, including France and Spain, where the number of people opting out of organ donation is a low as one in 50.

Dr Evan Harris, who proposed the resolution and is also a Liberal Democrat MP, told the conference: 'The situation is that relatives can oppose donation even when there is express consent. The time of bereavement is a very difficult time to ask relatives about donation and the views of their loved one. The presumed consent scheme solves most of these problems.' There have been various ethical and religious objections to the proposal, however, and the government has made it clear that it has no plans to change the law in this way. In the short term, at least, dealing with the organ donor shortage will have to rely upon people voluntary offering organs for transplant, either after their death or as live donors.

The risks: kidney donors

Clearly the decision to become a live donor is not one to be taken lightly. The risks attached to live organ donation vary according to the age and general health of the donor -- and according to the organ being donated.

A kidney transplant, which is now almost a 'routine' surgical procedure, is relatively safe -- and the loss of one kidney will not usually have any affect on a healthy person (although it will obviously lessen a person's ability to cope with any problems affecting the remaining kidney in later life). New 'keyhole' surgery techniques, moreover, mean that the operation can be carried out with minimal risk or impact on the donor. It is in the field of kidney transplants that an increase in the number of live donors could have the most immediate effect.

The risks: lung or liver donors

Lung or liver transplants are currently at the stage that kidney transplants were at 30 or so years ago. Either of these constitute a major operation, with serious risks attached. Both procedures are still very much in their infancy, and while partial removal of the liver should not impair its eventual function (the liver will regenerate itself and regrow), removal of part of a lung will result in a permanent reduction in lung capacity -- typically of about 20 per cent. Most people can function perfectly well with that sort of reduction in capacity, but it would have an effect on their ability to cope with any future disease or illness affecting their lungs. The operation for lung removal also involves major surgery to the ribcage and chest. Recovery requires a long period off work and free from normal activity.

'We perform lobectomies, removal of half of the lung, every day of the week in the treatment of lung cancer. I would typically quote to a patient a two or three percent chance of dying as a result of that operation if I was doing it for lung cancer. Admittedly those patients will almost inevitably have been smokers and they're often in their sixties and seventies, but nevertheless the removal of half of a lung is a major operation. It involves a large cut in the side of the chest, it involves a difficult anatomical dissection to both produce adequate structures for the surgeon to perform the transplant and to leave all of the structures such that the remaining lung will function. We know that if you make measurements of lung function about six months later there will be a permanent 20 per cent loss of the measured function. If you measure kidney function after removal of a kidney, however, you can't detect any difference.' -- John Dark, consultant cardiothorasic surgeon and head of transplant unit at the Freeman Hospital, Newcastle

See transcript of full interview with John Dark.

The Law

The Human Organ Transplants Act 1989 was passed primarily to prevent commercial dealing in human organs. It set up a statutory register of organ transplantation, and in 1990 the Unrelated Live Transplant Regulatory Authority (ULTRA) was established to consider applications to carry out transplants between two living unrelated persons.

ULTRA deals with two types of transplants:
x The so-called 'domino transplant', primarily used in cases where the donor is someone undergoing a heart and lung transplant but whose own heart or heart valves are healthy and so can be transplanted into someone else
x Transplants in which the donor is healthy and donating a kidney, or less commonly a lung or liver lobe

In the first type of transplant, ULTRA needs to be satisfied that two conditions are met:
x That no payment has been, or is to be, made; and
x That the doctor referring the application to ULTRA has clinical responsibility for the donor

In the second type of transplant, there are further conditions:
x That the doctor has given the donor an explanation of the nature of the medical procedure for, and the risk involved in, the removal of the organ in question;
x That the donor understands the nature of the medical procedure and risks as explained by his doctor, and consents to the removal of the organ in question;
x That the donor's consent was not obtained by any form of coercion or inducement;
x That the donor understands that he or she can withdraw consent at any time, but has not done so; and
x That the donor and the recipient have both been interviewed separately by an independent person approved by ULTRA who is satisfied that all these conditions have been met.
Any application must be agreed unanimously by three members of ULTRA nominated for this purpose or, if they are undecided, by a meeting of the whole Authority.

United Kingdom Guidelines for Living Donor Kidney Transplantation

In January 2000, the British Transplantation Society and the Renal Association published the United Kingdom Guidelines for Living Donor Kidney Transplantation. The introduction to the document states:

"The importance of living donors in kidney transplantation is increasingly becoming clear to all those working in the field of organ transplantation. Living donor kidney transplantation provides patients in end-stage renal disease (ESRD ) with the best chance of good long term rehabilitation. There is a severe shortfall in the number of cadaveric kidneys available for transplantation in the UK and greater use of kidneys from living donors offers considerable scope for increasing the number of transplants performed.

"The main objection to living kidney donation is that it exposes the healthy donor to the risks of major surgery and life with a solitary kidney. Living donor kidney transplantation must be undertaken with the highest possible standard of clinical care and as part of a properly planned programme. It is essential to ensure that donor morbidity is kept to an absolute minimum and that transplant outcome is optimised. The potential donor must be fully informed and free from coercion and rigorous assessment must be undertaken to determine their suitability to donate.

"A recent survey of renal transplant centres in the UK and Ireland emphasised the wide variability between units in the evaluation of living kidney donor evaluation and the methods of assessment. There is therefore a need to establish national guidelines in order to provide consistency in the standard of assessment and care of living donors. These guidelines have been prepared with the purpose of assisting clinicians and other health care workers involved with living donor kidney transplantation. It is hoped that the document will be of value in enabling individual clinicians and hospitals in the UK to produce their own local protocols for living donor kidney transplantation."

The main conclusions of the document are:

x Demand for organs continues to grow and steadily outstrips supply.
x Transplants from living kidney donors have a better success rate than those using cadaveric organs (from people who have died).
x Transplants from living kidney donors offer recipients the best hope of long term rehabilitation.
x The number of living donor kidney transplants taking place annually is low when compared to other countries. There is considerable scope for increasing living donor transplant activity in this country.
x However, best practice demands that the transplant team respects the autonomy of the living donor. The team has a duty to evaluate the risks of donation and transplantation and inform the donor accordingly.
x Transplantation should only take place if the risk to the donor is low, the procedure has a good chance of success and donation is entirely voluntary.
x The results of a transplant from an unrelated donor are equally as good as those from a related donor. It is ethically acceptable to consider a spouse, an adoptive parent or a close friend (where there is a strong and enduring emotional relationship ) as a potential kidney donor.
x Individuals under the age of 18 should rarely, if ever, be considered as potential living donors

On exchange donors between pairs of spouses (so-called 'swap' donations), the guidelines state:

x Blood group incompatibility excludes 30-40% of potential donors from donating to their spouse. Exchange donation between pairs of spouses has been suggested as a possible solution to this problem, although the number of pairs of spouses who could benefit is limited by blood group incompatibility to around 3%. In addition to the practical difficulties raised by paired exchange there are also significant ethical and legal concerns. Paired exchange seems, at present, an unlikely development in the UK and may be illegal under the Human Organ Transplant Act 1989.

Finally, on 'altruistic strangers' the guidelines state:

x Offers by altruistic strangers are often regarded indicative of psychological disturbance although there is little evidence to support this view and it is difficult to argue for dismissing such a donor on ethical grounds alone. This type of living donor transplant has not been undertaken in the UK.

Copies of the guidelines are available from:
The British Transplantation Society Secretariat
Triangle House
Broomhill Road
London SW18 4HX

Interview transcripts

Read more about organ transplants in these interviews:

Sarah Agboola, a kidney dialysis patient at Guy's Hospital, London, talks about her nine-year wait for a kidney transplant and what it means to live with kidney failure.

And from the medical profession, read the views of:

Dr John Dark, consultant cardiothorasic surgeon and head of transplant unit at the Freeman Hospital, Newcastle.

Dr Vivienne Nathansan, spokesperson for the BMA's Ethics Committee.

Professor Bobrow, former chairman of ULTRA (the Unrelated Live Transplant Regulatory Authority), the committee that vets UK applications for unrelated donor transplants.


Resources

National Organ Donor Register and Donor Card

To register that you wish to donate your organs and tissues when you die, or to obtain further information about organ donation, call this number (local call rate) and ask for an organ donor form. You should do this even if you carry a donor card.

Tel: 0845 60 60 4000

Or write to the following address:
The NHS Organ Donor Register
PO Box 14
Patchway
Bristol BS34 8ZZ

Other organisations

British Organ Donor Society (BODY)
Balsham
Cambridge CB1 6DL
Tel/Fax: -01223 893 636
E-mail: body@argonet.co.uk
Website: www.argonet.co.uk/body
Support group for all families involved with donors and recipients, and
those waiting for a transplant, or to be assessed for a transplant. Please
contact the above numbers for any information on organ donation and
transplantation.

United Kingdom Transplant Support Service Authority (UKTSSA)
Fox Den Road
Stoke Gifford
Bristol BS34 8RR
Tel: 0117 975 7575
Fax: 0117 975 7577
The UKTSSA provides a focal point for information on transplantation matters and is available as an enquiry service for the general public.

The National Kidney Federation
6 Stanley Street
Worksop
Nottinghamshire S81 7HX
Tel: 01909 487795
Helpline: 0845 601 0209 (Monday to Friday, 9am to 5pm, calls charged at local rates)
Fax: 01909 481723
Website: www.kidney.org.uk
E-mail: nkf@kidney.org.uk
The only UK charity run by renal patients, for renal patients. Campaigns for better treatment and provides support services to patients and carers.

Transplant Support Network
23 Temple Row
Keighley BD21 2AH
Tel: 01535 210101 (helpline open 9am to midnight every day)
Fax: 01535 692323
E-mail: Phatton@tsnet.demon.co.uk
Website: www.users.zetnet.co.uk/tsn/
Nationwide support network of volunteer transplant patients and their carers providing support, non-medical advice and information for all those coping with transplantation. Contact the above number for support and help for those who have experienced transplantation.

Unrelated Live Transplant Regulatory Authority (ULTRA)
Room 311
Wellington House
133-155 Waterloo Road
SE1 8UG
Website: www.doh.gov.uk/ultra.htm
ULTRA was set up to approve all transplant operations involving a live donor who is not a close blood relative of the recipient. Contact the above address to find out more about live donation.

The British Transplant Society
BTS Secretariat
c/o Catriona Sanderson
Triangle 3
Triangle House
Broomhill Road
London SW18 4HX
Tel: 020 8875 2413
Fax 020 8875 2421
email: catriona@immunology.org <mailto:catriona@immunology.org>
http://www.jr2.ox.ac.uk/bts/index4.htm
The British Transplant Society brings together surgeons, physicians, scientists and others to discuss matters of mutual interest in transplantation and make new knowledge widely available to advance the science of transplantation

Websites

TransWeb
www.transweb.org/index.htm
Excellent Australian-based website on transplantation and donation. Provides news articles, questions and answers on transplantation and donation, and includes a multimedia guide to the transplant process.

Children's Organ Transplant Association (COTA)
www.cota.org
Website of the US-based organisation that aims to promote organ donation. Website gives information on individual cases waiting for donations and provides links into other sites.

Organ Transplant Homepage
www.en.com/users/ddavis/frmain.htm
US website giving news, updates and personal accounts of transplantation in the US.

Organ Donation from Living Donors
http://cambridge-transplant.org.uk/program/renal/living.htm
Information on organ donation from living donors in the UK, from Addenbrooke's Hospital Transplant Unit.

The Renal Association
http://www.renal.org/
Founded in 1950, the Renal Association is the professional body for United Kingdom nephrologists. The objects of the Association are to advance, collate and disseminate knowledge of renal structure and function, to seek means for the prevention and treatment of renal disorders, and to deal with any matters concerning the welfare of patients with renal diseases and the organisation of services for their relief.

References and further reading

Report of the Working Party to Revive Organ Transplantation (Royal College of Surgeons of England, January 1999)
Report of the working party set up to look at transplantation. It deals with the current state of transplantation in England and Wales, projects present trends into the next decade and recommends a new strategy for transplantation.

Transplant Activity 1998 (United Kingdom Transplant Support Services Authority, 1999)
A detailed statistical overview of transplant activity in the UK during 1998, with comparisons to previous years.

United Kingdom Guidelines for Living Donor Kidney Transplantation (British Transplantation Society and the Renal Association, January 2000)
Guidelines covering the whole field of living donor kidney transplantations (see above [LINK]).

Organ Transplantation: Meanings and Realities by Stuart J Youngner (University of Wisconsin Press, 1996, £17.50)
Discussing the far-reaching connections of transplantation to human experiences, this text raises questions that are at once elemental and transcendent. It explores matters of life and death, body and mind, psyche and soul.

Organ Transplants: A Patient's Guide by Massachusetts General Hospital Organ Transplant Team, H F Pizer (Harvard University Press, 1991, £15.50)
This book, written by members of the transplant team at the Massachusetts General Hospital in collaboration with a medical journalist, is expressly created for patients and their families, the lay public and allied health personnel.

The Puzzle People: Memoirs of a Transplant Surgeon by Thomas E Starzl
(University of Pittsburgh Press, 1992, £18.50)
Thomas Starzl recounts his career as a transplant surgeon and addresses the moral and ethical issues raised by transplantation.

A Question of Give and Take: Improving the Supply of Donor Organs for Transplantation by Bill New, Michael Solomon, Robert Dingwall and Jean McHale (King's Fund, 1994, £9.99)
The focus of this report is on the supply of organs, which, in the developed world, predominantly come from deceased donors, who have been artificially ventilated in an Intensive Care Unit (ICU).