More commonly asked question
Waiting For A Transplant?
The average waiting time for a heart transplant in the UK is about six months.
Being accepted for a heart transplant has advantages and disadvantages. Being accepted for a transplant carries with it the implication that your heart failure is severe and life-threatening. The waiting time can be a period of great anxiety with the ever-present risk of dying if the transplant is not carried out in time. In practice, about 15 in every 100 patients die while on the waiting list for a transplant.
Most transplant centres will want to make sure that, before they perform the transplant, you have been treated for any other medical problems, especially infections. They will also ask you to visit a dentist, to make sure you do not have an infection in the mouth which could spread to your new heart.
The doctor or cardiologist who originally referred you to the transplant centre will usually continue to see you and treat your heart condition – but you are encouraged to keep in close contact with the transplant centre.
It is important that you can be contacted at short notice. You may be given a radio bleeper.
If you have to stay in hospital while you wait for a transplant
About one in three patients on the transplant list will be too ill to be discharged from hospital and will have to remain in hospital until the transplant is performed. Some priority is often given to these patients, who are clearly in much more urgent need of a transplant. Some patients may have to spend some of their waiting time in an intensive care unit, especially if increasingly powerful drugs have to be used to support and stimulate the heart. However, despite the severity of their illness, these patients can expect to do just as well after a transplant as other patients whose condition is more stable.
Getting The Call For A Transplant
When a donor heart is found which is thought to be suitable, the transplant centre will contact you. They will check that you have no new medical problems and will ask you to go to the centre. Arrangements with the local ambulance service will usually have been made beforehand.
When you are admitted to the centre you will be reassessed rapidly and some of the investigations that you had at your first assessment will be repeated. The aim is to make sure that nothing new has happened which might make a transplant less likely to be successful.
All the usual preparations for major surgery will be carried out, including shaving and bathing.
In the meantime, a separate surgical team will be examining the donor heart. Donor hearts may come from anywhere within the UK or, occasionally, from other countries in western Europe. A period of four to five hours between removal from the donor and restoration of the blood supply in the recipient is acceptable, but usually efforts are made to reduce this time as much as possible. Hearts coming from some distance are often brought by air.
You will not be given the anaesthetic for the operation until it has been confirmed that the donor heart is suitable and in good condition. In some cases the donor organ is found to be unsuitable when examined by the surgical team. If this happens, the procedure will be abandoned and you will unfortunately have had a wasted journey to hospital. This can be distressing but is unavoidable given the logistical problems involved in organising a transplant.
The recipient’s heart is not usually removed until the donor heart is physically within the hospital.
Most transplants are performed at night as this is when most donor hearts become available. The operation takes between three and five hours.
What Happens Immediately After The Operation?
After the operation, you will be moved to the intensive care unit, just as you would be after routine cardiac surgery.
You will continue breathing with the help of a ventilator machine for at least several hours until your condition is stable. Many patients wake the following morning; others take a little longer. If all is well, you will be moved out of the intensive care unit quite quickly – certainly within a few days. You may be moved to a high dependency or ‘step down’ ward.
Some transplant patients are nursed in special areas but often these will be on the same wards as patients who have had routine cardiac and thoracic surgery.
It is usual for transplant patients to be kept in a separate room or bay and for the number of visitors to be restricted. Visitors will only be asked to wear gloves, masks and gowns if there is a particularly high risk of infection
After The Transplant Operation
You will be given ‘immunosuppressant drugs’ soon after the operation. Without these drugs, your body would rapidly recognise the new heart as ‘foreign’ and mount an attack, or an attempt to ‘reject’ it. The immunosuppressant drugs control this rejection by reducing the strength of your body’s immune system. (The ‘immune system’ means the cells and proteins in the blood and tissues that help protect the body against attack from bacteria and viruses.) However, these immunosuppressant drugs also reduce your body’s defences against infection.
Rejection is most likely to happen within the first months after a transplant and during this period you will be given quite a high dose of immunosuppressant drugs. It is during this period that the risk of infection is at its greatest.
What drugs are given after a transplant?
Immunosuppressants (or immunosuppressant drugs) are given to all patients after a heart transplantation. Other drugs may also be given.
Almost all patients are given one or two of the following three immunosuppressant drugs: cyclosporin, azathioprine, and prednisolone. The first dose is usually given as you go to the operating theatre, or during the operation. You will need to continue taking immunosuppressants for the rest of your life.
This drug is responsible for the huge improvement in the success rate of heart transplants since the early 1980s. It is given in the form of capsules or syrup, usually twice a day. Another form, called Neoral, is now widely used and may replace the older formulations.
Cyclosporin causes some kidney damage in all patients and this has to be monitored carefully. It has some quite noticeable side effects: it may cause increased growth of facial and body hair, and it tends to make the gums thick and sore.
This drug reduces the production of white cells in the bone marrow. Its effect is monitored by measuring the white blood cell count and adjusting the dose accordingly. The main side effect of this drug is that it may reduce the production of cells in the marrow by too much, and this dramatically increases the risk of infection or bleeding.
Quite high doses of this steroid drug are given to some patients soon after the operation. Patients who take prednisolone tend to gain weight and become fuller in the face. Continued treatment with steroids can lead to weakness of bones and general poor healing of the tissue. The dose is usually reduced within the first weeks and some patients can stop taking this drug after six or twelve months.
Antibiotics are given during and after the transplant and may be given from time to time if there is a threat of infection.
Blood pressure lowering drugs
The combination of cyclosporin and steroids often causes high blood pressure and many patients need to take blood pressure lowering drugs.
There may also be a tendency to retain fluid, so diuretics (water tablets) are often given.
During the first few months after a transplant, your life will feel dominated by all the medicines you have to take, and the frequent visits you need to make to the hospital.
Life After A Transplant
Many heart transplant patients can be discharged from hospital two or three weeks after the operation. For the first month or two after the operation, you will probably have to stay very close to the transplant centre – in a hospital flat or similar accommodation, unless you live fairly locally. After this, you will need to attend weekly appointments at the outpatients’ clinic. Even years after a transplant, many patients have two or more outpatient appointments a year at the transplant centre.
Recovery from the operation is as rapid as for other forms of cardiac surgery, except that transplant patients were obviously weaker before the operation.
You will be encouraged to take part in a rehabilitation programme. This includes visits to the gymnasium and supervised physiotherapy. Within a few weeks of the operation, you will be able to do quite vigorous exercise. The rehabilitation programme also offers advice about how to have a healthier lifestyle, and psychological support for you and your partner.
About six to eight weeks after the operation your life will return to something like normal. However, as with other types of heart surgery, you will still need to take large numbers of tablets. You will also need to keep in close contact with the transplant centre.
It is important that you eat a healthy, balanced diet. There is a tendency to gain weight, especially if you are taking steroids. You will be encouraged to do regular exercise, always starting with a slow warm-up period. Your new heart will be without a nerve supply, at least during the first year, and therefore responds much more slowly than normal to the demands of exercise. Most transplant patients are eventually able to take part in a full range of activities and many are able to do sports.
Most transplant patients cope remarkably well with the psychological stress associated with a transplant. It is important to remember that the heart is no more than a pump and that a transplant does not change your personality or behaviour. Some patients do suffer mood swings with the high doses of steroids used in the early days after a transplant. Women who have a heart transplant may feel distressed by the hair growth and skin changes associated with immunosuppressant drugs.
If you have been ill for many years before the procedure, you may have become dependent on your partner. The independence you enjoy after recovery from the transplant may lead to difficulties in your relationship with your partner.
What Complications Might There Be?
In the weeks and months after the transplant
Attempts to reject the new heart
Soon after the transplant, the body tries hard to reject the new heart. You will need to take quite high doses of immunosuppressants to reduce the risk of rejection. You will need to have regular check-ups to see how well the transplanted heart is performing.
The best method of checking the new heart is to take some small specimens of the heart muscle (a biopsy) at regular intervals and examine them under a microscope. You will be given a local anesthetic. A catheter (a fine, hollow tube) with a little cup-shaped biopsy device at the end, is introduced through a vein in the neck. Using X-ray screening, the catheter is manipulated into the heart and small specimens of tissue are taken. In the first year after the transplant, you will probably have 10 or 12 biopsies. If rejection has been a particular problem, biopsies would be done more frequently.
Another way of checking the transplanted heart is by taking an echocardiogram, which is an ultrasound picture of the heart.
Infection is always a worry after transplantation, especially in the first few months. You will be encouraged to report any signs of infection, and should contact the transplant centre if you have a temperature. You may need to take antibiotics but they should only be started after attempts have been made to identify the cause of infection. Some antibiotics interact with the immunosuppressants and in general they should only be given either by the transplant centre or after discussion with the medical staff there.
Side effects of drugs
Other complications may arise from the side effects of the various drugs. These side effects can be kept to a minimum but they are an unavoidable part of heart transplantation.
In the years after the transplant
As the years go by, the risk of acute rejection becomes much less and the doses of immunosuppressants can be reduced. Your immune system will gradually become more effective again, but you will remain at a small extra risk of infection.
However, one of the potential complications of long-term immunosuppression is a higher risk of certain forms of cancer. About one in every ten transplant patients develops a form of cancer after their heart transplant. Two forms of cancer occur more commonly in people who are taking immunosuppressants: skin cancer and lymph gland tumours.
Skin cancer is more common in people with sun-damaged skin and accounts for four out of every ten cancers seen after heart transplantation. As these are superficial it is relatively easy to treat them.
Lymph gland tumours (lymphomas) also account for four in every ten cancers and may occur at any stage after a transplant. Some of these tumours shrink when the dose of immunosuppressant drugs is reduced, while others require chemotherapy.
Common forms of cancer – such as cancer of the lung or bowel, or breast cancer – are no more common in heart transplant patients than they are in the general population.
There are other long-term side effects of immunosuppressants – in particular, damage to the kidneys from cyclosporin or thinning of the bones caused by steroids.
Although acute rejection of the new heart is rare after the first three to six months, the body may continue to ‘attack’ the new heart. This is known as ‘chronic rejection’. The site of the attack is the lining of the coronary arteries carrying blood around the new heart, as this is the ‘frontier’ between the donor and yourself. The lining of these arteries gradually thickens and eventually the arteries may become blocked. This is rarely seen in the first few years after transplantation but can become a serious problem after five years. The situation is monitored by regular angiography (a test which shows where the arteries are narrowed and how narrow they have become).
Most patients are treated with aspirin or anticoagulants to reduce the risk of blood clotting. The thickening of the arteries occurs much faster in patients who have high cholesterol levels, so it is important to control your blood cholesterol level very carefully. There is no satisfactory treatment for this narrowing of the coronary arteries, although a small number of patients may be considered for a second transplant.
What is the long-term outlook?
For those people who are fortunate enough to receive a transplant, the long-term outlook is now very good indeed. Between 85% and 90% of transplant patients live for at least a year after the transplant; 75% are alive after five years; and between 50% and 60% are alive after ten years
Quality of life is usually good, especially if the side effects of the immunosuppressant drugs can be kept to a minimum.
You will be able to return to work – or go back to further education or school – and many transplant patients can take part in sporting activities.
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