Organ Donation Teaching Resource Pack

Organ Donation Teaching Resource Pack

The Need for Transplants

People need transplants for many reasons. The most common of these are:

• disease;
• genetic disorder;
• accident;
• alcohol/drug abuse.

So what can be done? What can be transplanted?

ORGANS - kidneys, heart, lungs, liver, pancreas, small bowel

TISSUE - corneas, heart valves, bone, skin, connective tissue

• Heart and lungs need to be transplanted within 4-5 hours of removal from the donor.
• Ideally livers should be transplanted within 9-10 hours of removal from the donor and kidneys within 24 hours of retrieval.
• Tissue can be stored in special banks for various times.

How is transplantation organised?

When death has been confirmed in a patient who could be considered as a potential organ donor, the local transplant co-ordinator is contacted. The transplant co-ordinator checks the history of the donor to confirm that there are no medical or social barriers to donation. The co-ordinator also discusses the possibility of donation with the next of kin.

All patients who are waiting for transplants are registered on the National Transplant Database at NHS UK Transplant and a computer search is made to find the most suitable patients for the organs that have become available, a process known as 'matching'. Once the patients and their locations are identified, the doctors at those transplant units are alerted and asked to confirm acceptance of the organ. As they do so, the preparation of their patient for the transplant operation begins.

A team of specialists is called to the donor's hospital to carry out the surgery to remove and preserve the organs for transport to the transplant unit. If necessary, special transport arrangements, such as an ambulance with a police escort or a chartered aeroplane, will be made to ensure no time is lost.

It can happen that when a donor's organs are examined, they are found to be affected by disease or damaged in some way which makes them unsuitable for use. This will mean that a waiting patient's hopes are dashed, and that their wait for a transplant must continue.

More information on the way transplantation is organised is given in the section 'Transplantation Process'.

HEART TRANSPLANTATION

The Scottish Heart Transplant Unit was opened in December 1991 to provide heart transplantation services for the people of Scotland. Those who need a combined heart and lung transplant must go to Newcastle for their operation.

The heart pumps blood around the body to feed the cells with oxygen and nutrients.

Mr Andrew Murday, Transplant Consultant, Glasgow Royal Infirmary says:

"Each year in Scotland many thousands of people die from heart disease. A few of these can be saved by heart transplantation. Although most of the deaths from heart disease occur in older people, it can affect all ages. Some babies are born with abnormal hearts, a few children and teenagers develop heart muscle weakness, and as people get older they can have heart attacks and sometimes abnormalities of the heart valves.

For the majority, these conditions are treated with pills or conventional operations. When these treatments are no longer an option, then heart transplantation is sometimes all that is left.

Each year in the United Kingdom only about 200 heart transplants are carried out. The number of donor hearts that become available limits this number. The results are good. About 10 years after heart transplantation, more than half will still be alive, which is much better than the outcome if the same severity of heart failure is managed with other forms of treatment. We also know that the procedure dramatically improves people's quality of life.

Some time in the future we may be able to use artificial hearts, or perhaps even hearts developed by biological engineering. Until then, heart transplantation will remain the only treatment option for a small but very sick group of people."

LIVER TRANSPLANTATION

The Scottish Liver Transplant Unit (SLTU) was opened in November 1992 to provide liver transplantation services to the people of Scotland.

The liver is the largest organ in the body. It has many functions, the most important of which is making new proteins and processing waste products.

Liver transplantation is done for two major reasons:

• To treat the symptoms of chronic liver disease such as primary biliary cirrhosis.
• To increase the life span of a patient dying from either acute or chronic liver failure.

In many people's minds, liver disease is associated with alcohol-related problems. Scotland does have a reputation for 'hard drinking', but for many years this was not the major cause of liver disease - primary biliary cirrhosis was the most prevalent. However, recent analysis indicates that Hepatitis C (hepatitis caused by a virus) is becoming the more common reason for transplantation.

Drug abuse, too, can be a cause for liver failure, particularly an overdose of paracetamol.

There are many sensitivities and prejudices amongst the public on these cases - they present what we call 'ethical dilemmas'. There will be an opportunity to discuss these issues further on.

Dr Ken Simpson is a liver transplant physician at Edinburgh Royal Infirmary. This is how he describes his work:

"In general, physicians, as distinct from surgeons, treat patients with medicines rather than surgical operations. So we play no role in the technical aspects of the liver transplant operation. Our contribution to the assessment of a patient is to check what has caused the patient's liver disease and how bad the disease is, if there is anything else short of transplantation that can be done for them, do they have any other diseases or conditions that may make liver transplantation difficult or even dangerous? Following the operation we monitor for complications such as rejection and infection and treat them, if they occur, for the lifetime of the patient. Another important role is in the education of the patient and their relatives about liver disease and transplantation so they are able to make an informed choice about whether they would like the operation or not. Sometimes it can be very difficult telling a patient or their relatives that a transplant is inappropriate, as there is no alternative treatment, such as dialysis in the case of patients with renal disease."

KIDNEY TRANSPLANTATION

We have two kidneys situated just above the waist towards the back, one on each side of the spine.

The kidneys are vital organs in our bodies and when they fail (renal failure) people suffer tiredness, swelling, breathlessness, anaemia, anxiety and nausea. This in turn forces a complete change of lifestyle for the individual sufferers and their families. Many have to have dialysis. This artificially carries out the duties of a kidney in cleansing the blood. This can be done either at home or hospital - usually three times a week for 3-6 hour sessions.

Kidney Donors

There are two sources of kidneys for transplant:

• from a person who has died usually having suffered brain death as a result of an injury or brain haemorrhage;
• living kidney donation - usually from a family member/partner.

Mr John Forsythe, a consultant transplant surgeon, has this to say:

"I think those of us who work in the field of transplantation are very lucky. I am a surgeon, and can say that the operations involved in transplantation are very different to any other forms of surgery. Most of the time, surgeons remove organs or parts of organs from the body because they are diseased. In transplant surgery, we remove an organ from somebody who has donated it to a friend or relative, or from somebody who has died. We then transplant the organ into another individual who is in desperate need. The transformation is astounding. Quite often, I pass patients in the corridor two months after their transplant surgery. It is only when they stop me that I recognise them, because they look so different when they are healthy compared to when they were sick.

Unfortunately, I also see people becoming very ill and dying while waiting for a transplant. I know that a donated organ could save their lives. Therefore I think it is very important that everyone who is involved in the field of transplantation makes an effort to let the general public know of the benefits of transplantation. I also know that the gift of donation at the time of tragedy can provide some comfort for a family who are trying to come to terms with losing someone they love.

It is also important to me that, if people have strong views against organ donation or transplantation, these are known to their family. I would never want to remove an organ from someone who did not want this to happen. We should provide information so that people can decide for themselves."

Mr Murat Akyol, a transplant surgeon for 22 years, who currently works in the Transplant Unit at Edinburgh Royal Infirmary, said this of his work:

"Performing a transplant is a gratifying experience, more so than any other surgical procedure, since it makes so much difference to a patient's quality of life or is indeed life saving.

It is also a uniquely humbling experience knowing that it relies on the courageous and generous gift of organs from a donor family."

Living Donor Kidney Transplant

In Britain about 1,500 kidney transplants are performed annually. The majority of these are from those who have been confirmed dead by brain stem tests (see 'Transplantation Process'). This occurs most often in hospital intensive care units and often as a result of spontaneous brain haemorrhage or after a road traffic accident. These donors are called cadaveric donors. However, for many of the reasons studied already, there are too few kidneys available to help all those waiting on the list. In the future there will be more emphasis on increasing the number of living donor kidney donations to overcome this shortage.

In the 1990s living kidney donation in the UK accounted for only 10% of kidney transplants. It now accounts for more than 20%. In living donation, kidneys for transplantation come from living relatives or close friends. Since the make-up of the body within families can be similar, or, more rarely as in the case of identical twins, the same, there is a greater chance of a successful kidney transplant if the kidney donated is from a living relative. One of the most frequent concerns of potential living kidney donors is whether the loss of one kidney will hamper them in later life. A healthy person can live a completely normal life with only one kidney, lifestyle should not be affected and normal work can continue.

Children/Young People and Kidney Transplants

Children and young people who have kidney failure receive priority for transplantation.

Like adults, children sometimes have to go through other treatments while they wait for a transplant. This is called DIALYSIS.

Dialysis is a way of removing wastes and excess water from the body by using a filter.

There are two types of dialysis:

1 HAEMODIALYSIS

• Normally done in hospitals.
• Three times a week and lasts about 2-4 hours.

The patient's blood flows through the artificial filter by means of a machine. Needles (inserted into a specially enlarged blood vessel called a fistula, usually in the arm) take the blood to the machine and return it to the body.

2 PERITONEAL DIALYSIS

• Can be done at home, at work or if necessary at school and on holidays.
• Done during the day or by a small machine at night during sleep.

The peritoneal membrane is the lining of the abdomen surrounding and protecting many of the body's internal organs. It has a very rich blood supply, making it an ideal area in which to carry out dialysis.

Discussion point Children/young people who are on dialysis, particularly haemodialysis, frequently miss school. What sort of problems do you think their high absence rate causes to these children?

Once transplanted, children can come off dialysis, but they will have to stay on a certain amount of drugs for the remainder of their lives. Sometimes there are initial side effects from the drugs such as weight gain or acne. If they stop taking the drugs their bodies will reject the new organ.

Discussion points Why do you think young people might stop taking their medication? How might the side effects of drugs make a young person feel? Is there anything the school community could do to help minimise the problems faced by these young people?

Ethnic Minorities

In the United Kingdom, the Asian, black African and black Caribbean populations have a high rate of diabetes and hypertension, diseases which can lead to organ failure. This means that Asian and black African/Caribbean people are three times more likely to need a transplant. At present nearly 400 black patients are waiting for a transplant; some of them are children.

When someone needs a kidney transplant, the doctors have to try and match, as far as is possible, the tissue of the patient with the tissue of the donor. The better the match, the better the likelihood of a successful transplant and the better the chance of the patient getting a new lease of life.

The reality is that it is more likely that a better match will be found among donors from the same population groups or ethnic groups. This makes it essential that there are people from all ethnic groups registered as potential donors, and in particular from the Asian, black African/Caribbean communities.

TISSUE DONATION

What is tissue donation?

Blood is a type of tissue that can be donated over and over again to save many lives. However, blood is not the only body tissue that can be donated.

Other tissue includes:

• skeletal bone;
• tendons;
• heart valves;
• bone marrow;
• skin;
• corneas.

The main differences between organ and tissue donations are:

• Tissue can be obtained from people up to 24 hours after their death.
• Tissue can be stored for much longer than organs. In fact tissue can be stored for up to 10 years in some cases.

Tissue donation is probably the least well known type of donation, as Elizabeth Melville, the tissue transplant co-ordinator in Edinburgh, describes:

"A lot of people don't know about tissue transplant. It doesn't grab the headlines like organ donation. But it's not just organs that can be donated after death to help others live better lives. For example, if heart transplant is not possible, the valves inside the heart can be used to treat youngsters born with heart defects so that they can run around and breath properly. Tendons from the legs can be used to treat people with serious knee injuries so that they can walk again. Skin can be used to save the lives of people who have sustained severe burns and the corneas can be used to treat conditions or injuries that cause blindness. Some people are uneasy about all of this - they think it's a bit morbid. But we have to look at the people whose lives are saved or substantially improved by these transplants.

It's very important that people discuss their wishes about donation with those close to them because it is the family who carry the responsibility for revealing the wishes of their loved one after death. It's such a special gift, such a deep tenderness towards others at such a difficult time. It has been my privilege to witness this and the gratitude and joy of those, and their loved ones, whose lives are restored by it."

Statistics

In the UK during 2002:

• organs from 765 people who died were used to save or dramatically improve many people's lives through 2,334 transplants;
• a further 2,214 people had their sight restored;
• living donor kidney transplants increased by 4% (358 in 2001, 371 in 2002);
• the number of live kidney transplants doubled since 1997.

Updated figures can be obtained fromwww.uktransplant.org.uk

Discussion point How would you feel if you or someone you loved received a life saving organ?

More Facts

• 5,662 people are still actively waiting for transplants.
• In the UK, 235 young people under the age of 18 received a transplant in 2002.